Sometimes I wonder if I am the only one who doesn't approve of big pharma. And now it turns out that in general more of us disapprove of big pharma and think they are ripping off patients who rake their prescription medications. Its nice to know I am not alone in being critical.
You can read the article here. Big pharma companies have a lower favorability rating than the erect of the healthcare industry, airlines and banks. And only slightly more favorable than oil companies.
Dec 31, 2019
Dec 30, 2019
Back to work....
Today I am back to work after almost three weeks off. I had to dig around to find a pair of pants and haven't yet found my shoes. Summer vacation means shorts, sandals and sneakers, not long pants and work shoes. Our lunches are made (yes I make lunch for both of us every week day) but the nice cat is out so I have to get him back in before leaving. The evil cat is busy plotting our demise....
Yesterday I had a good PT appointment. The therapist thinks that I probably didn't damage any major ligaments and probably only the meniscus, which sometimes does not require surgery. It depends how it heals and how badly it was damaged.
Also my rheumatologist thinks I am doing pretty well - this means no blood work for two whole months and no follow up for three months. Sometimes I have blood work every two weeks and appointments every six weeks so this is much better.
Finally my therapist is an idiot. Okay maybe a little harsh but she doesn't seem to understand my family dynamics so it was a fruitless discussion. She may become my former therapist shortly. After every appointment with her, I wonder why I am still seeing her. But I try to manage the amount of change in my life and next week I see my new PCP for the first time. So the jury is still out but its not looking that good for her. The real decision is do I still need a therapist.
But now to find the cat and my shoes so I can go to work. Maybe they missed me....
Yesterday I had a good PT appointment. The therapist thinks that I probably didn't damage any major ligaments and probably only the meniscus, which sometimes does not require surgery. It depends how it heals and how badly it was damaged.
Also my rheumatologist thinks I am doing pretty well - this means no blood work for two whole months and no follow up for three months. Sometimes I have blood work every two weeks and appointments every six weeks so this is much better.
Finally my therapist is an idiot. Okay maybe a little harsh but she doesn't seem to understand my family dynamics so it was a fruitless discussion. She may become my former therapist shortly. After every appointment with her, I wonder why I am still seeing her. But I try to manage the amount of change in my life and next week I see my new PCP for the first time. So the jury is still out but its not looking that good for her. The real decision is do I still need a therapist.
But now to find the cat and my shoes so I can go to work. Maybe they missed me....
Dec 24, 2019
Cancer language
I recently read about more offensive language of cancer. Where do people get these ideas?
I know then President Nixon declared a war on cancer in the early 1970s. Fine, have your war on cancer but sending in armies of scientists and doctors to research it to death and kill it off. But the people with cancer? We are not at war, we just want to stay alive.
I really dislike the S-word. Why? Because its a label. I am a person; I am not a label. You can describe me by saying words like short, slightly flabby, or something else, or even smart or other nice words. You can even say slightly cranky or pushy or assertive. You can also say I am a patient and a frequent flier at my local hospital. But I am not a survivor. All I have survived is a billion or so doctor's appointments and medical misadventures. Okay, you can say I have survived driving in metropolitan Boston for the last few decades. Sometimes that's a daily demolition derby.
I didn't survive cancer. With cancer, you can achieve remission, partial remission, or have NED (No Evidence of Disease) status (which is me currently). But you are never told you are cured. If you are told you are cured your doctor must bestupid a miracle worker because there is no cure for cancer. Well okay, there are a few cancers that can be cured but definitely not all. You will spend the rest of your life being 'best buds' with your oncologist, endocrinologist, or so other specialist.
Now the CDC in its infinite wisdom as a part of our government has launched a new program called Bring Your Brave, which is a breast cancer awareness program for young women. Really? I find it almost as offensive as the boobies programs that are out there. Bring my brave what? My brave face - the one I wear when my doctor is about to give me bad news or I am heading off for another surgery? My brave suit of armor when I have to deal with a bunch of nitwits somewhere?
And why does it only focus on breast cancer? It would be much better to have a cancer awareness program for all types of cancer for younger adults. Most do not expect to be diagnosed with cancer and have their world upside down.
For any other ailment, you are a patient or a person. This patient has a complication with their cardiac surgery. Or 'this person has an ulcer', or 'congestive heart failure', or 'strep throat'. Why can't we say this patient has stage III pancreatic cancer? Why does it have to be 'this person is fighting metastatic brain cancer' or this patient is a breast cancer survivor'?
These war words are the obscenities of the cancer world. Fix your vocabulary people! Thank you.
I know then President Nixon declared a war on cancer in the early 1970s. Fine, have your war on cancer but sending in armies of scientists and doctors to research it to death and kill it off. But the people with cancer? We are not at war, we just want to stay alive.
I really dislike the S-word. Why? Because its a label. I am a person; I am not a label. You can describe me by saying words like short, slightly flabby, or something else, or even smart or other nice words. You can even say slightly cranky or pushy or assertive. You can also say I am a patient and a frequent flier at my local hospital. But I am not a survivor. All I have survived is a billion or so doctor's appointments and medical misadventures. Okay, you can say I have survived driving in metropolitan Boston for the last few decades. Sometimes that's a daily demolition derby.
I didn't survive cancer. With cancer, you can achieve remission, partial remission, or have NED (No Evidence of Disease) status (which is me currently). But you are never told you are cured. If you are told you are cured your doctor must be
Now the CDC in its infinite wisdom as a part of our government has launched a new program called Bring Your Brave, which is a breast cancer awareness program for young women. Really? I find it almost as offensive as the boobies programs that are out there. Bring my brave what? My brave face - the one I wear when my doctor is about to give me bad news or I am heading off for another surgery? My brave suit of armor when I have to deal with a bunch of nitwits somewhere?
And why does it only focus on breast cancer? It would be much better to have a cancer awareness program for all types of cancer for younger adults. Most do not expect to be diagnosed with cancer and have their world upside down.
For any other ailment, you are a patient or a person. This patient has a complication with their cardiac surgery. Or 'this person has an ulcer', or 'congestive heart failure', or 'strep throat'. Why can't we say this patient has stage III pancreatic cancer? Why does it have to be 'this person is fighting metastatic brain cancer' or this patient is a breast cancer survivor'?
These war words are the obscenities of the cancer world. Fix your vocabulary people! Thank you.
Dec 23, 2019
I am unsure
So I have had the same doctor for pain management, Dr G, for a good six years now because of my back pain and later fibromyalgia. We have had a good relationship and he has helped control my pain. I have always liked him and thought he was doing right by me.
I have a friend, L, who has been also going to him for pain management for her issues, which have included curvature issues with her spine. We have compared notes and treatments in the past and both like him.
I had lunch with L this week for the first time after some extensive back surgery last spring. She told me she will never see Dr. G again. He continued to treat her pain, never referred her to a surgeon or anyone else, or sent her for more scans. As a result, her back surgery was much more extensive than if she had had the surgery five years ago. She is very mad at him.
L got a new primary care last year who referred her to a surgeon for her back pain who told her she should have had surgery years ago. But Dr G is an anesthesiologist so he didn't ever refer her to a surgeon.
Now I do not know what to think. Dr G has always told me there is now surgical cure for my pain and I have believed him. I have also done some research on my own on potential back surgery and found that back surgery is very iffy in most cases so I have continued to agree with him. I know every patient is different but this makes me unsure about the whole situation.
I find this very disappointing and disheartening in that we assume a doctor has our best interests at heart but L clearly had a different experience. Dr G believes in medicine to treat pain as that is what he does as an anesthesiologist. A surgeon always believes that surgery is best because that is what they do. Patients get stuck in the middle. And we want to believe that what our doctors tell us is in our best interest.
I think I need to shift my focus from believing Dr G is always correct to doing some double checking. And I have a plan. I see Dr G this coming Friday as a follow up. But then I see my new primary care in a couple more weeks and I will talk to her about my pain issues, particularly my back. I do not want unnecessary surgery but I do want to do whatever I can to feel better.
We must trust our doctors but sometimes we need to do a little double checking. I don't like that part.
I have a friend, L, who has been also going to him for pain management for her issues, which have included curvature issues with her spine. We have compared notes and treatments in the past and both like him.
I had lunch with L this week for the first time after some extensive back surgery last spring. She told me she will never see Dr. G again. He continued to treat her pain, never referred her to a surgeon or anyone else, or sent her for more scans. As a result, her back surgery was much more extensive than if she had had the surgery five years ago. She is very mad at him.
L got a new primary care last year who referred her to a surgeon for her back pain who told her she should have had surgery years ago. But Dr G is an anesthesiologist so he didn't ever refer her to a surgeon.
Now I do not know what to think. Dr G has always told me there is now surgical cure for my pain and I have believed him. I have also done some research on my own on potential back surgery and found that back surgery is very iffy in most cases so I have continued to agree with him. I know every patient is different but this makes me unsure about the whole situation.
I find this very disappointing and disheartening in that we assume a doctor has our best interests at heart but L clearly had a different experience. Dr G believes in medicine to treat pain as that is what he does as an anesthesiologist. A surgeon always believes that surgery is best because that is what they do. Patients get stuck in the middle. And we want to believe that what our doctors tell us is in our best interest.
I think I need to shift my focus from believing Dr G is always correct to doing some double checking. And I have a plan. I see Dr G this coming Friday as a follow up. But then I see my new primary care in a couple more weeks and I will talk to her about my pain issues, particularly my back. I do not want unnecessary surgery but I do want to do whatever I can to feel better.
We must trust our doctors but sometimes we need to do a little double checking. I don't like that part.
Dec 17, 2019
More on change
As part of moving, we are looking at a variety of locations. The biggest requirement is that my husband's commute stays reasonable. Well the first requirement is that we buy a more affordable house. But my husband's commute is the other significant factor.
Originally, I said we need to stay near the hospital where I am treated, relatively easy commute for me to work, stay near the gym I go to (because it is wonderful) and stay near my family members who live locally. Then we realized that as we downsize, my working will become a lesser requirement. And if I don't work, I can take a day each week to spend with family members so that is two things down.
The next issue of being near the wonderful gym I go to for dilapidated people is significant. But I hope if we move too far for it to be easy to get to three times a week, I might be able to find another gym with the right kind of equipment and supplement that with a physical therapist.
Finally, the remaining big issue is finding another hospital. I really don't want to but if necessary I would. I have been a mostly happy patient there for almost 35 years. All my medical records are there. But if it became more than a 45 minute drive, that might become an issue since I go there an average of once a week. I think that would become a last resort but could be under consideration. The bonus is that it is about 10 minutes from my husband's job so that if he has a good commute chances are it would still be accessible for me.
I have considered if we move further out I might make a point of getting registered at a more local hospital so that the bulk of my medical history and allergies are there in case of an emergency visit. But I am not impressed with what would be the new local hospital's emergency room so that might be off the table.
Grr. I just want the damn move to be over so I can get through the all this packing and un packing.
Originally, I said we need to stay near the hospital where I am treated, relatively easy commute for me to work, stay near the gym I go to (because it is wonderful) and stay near my family members who live locally. Then we realized that as we downsize, my working will become a lesser requirement. And if I don't work, I can take a day each week to spend with family members so that is two things down.
The next issue of being near the wonderful gym I go to for dilapidated people is significant. But I hope if we move too far for it to be easy to get to three times a week, I might be able to find another gym with the right kind of equipment and supplement that with a physical therapist.
Finally, the remaining big issue is finding another hospital. I really don't want to but if necessary I would. I have been a mostly happy patient there for almost 35 years. All my medical records are there. But if it became more than a 45 minute drive, that might become an issue since I go there an average of once a week. I think that would become a last resort but could be under consideration. The bonus is that it is about 10 minutes from my husband's job so that if he has a good commute chances are it would still be accessible for me.
I have considered if we move further out I might make a point of getting registered at a more local hospital so that the bulk of my medical history and allergies are there in case of an emergency visit. But I am not impressed with what would be the new local hospital's emergency room so that might be off the table.
Grr. I just want the damn move to be over so I can get through the all this packing and un packing.
Dec 16, 2019
Keeping silent on health issues
I find it very sad when people feel forced to keep their illnesses private. As you may have heard, Jackie Collins, the author, died this weekend of breast cancer. Apparently she was diagnosed six and one half years ago with stage IV breast cancer and only told her daughters.
Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?
But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.
A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.
Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.
Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.
Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?
But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.
A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.
Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.
Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.
Dec 10, 2019
Price gouging
That's the only term for when drug companies hike prices 5000 percent. One drug went from $13.50 to $750 (no I am not missing a decinal point). Thats a big price increase. I could not believe it when I read the article.
"Although some price increases have been caused by shortages, others have resulted from a business strategy of buying old neglected drugs and turning them into high-priced “specialty drugs.”"
And its not just one drug, its several. So what happened to the old justification of the research and development costs are so high? There were no new development costs. Probably just marketing crap, once again.
"Although some price increases have been caused by shortages, others have resulted from a business strategy of buying old neglected drugs and turning them into high-priced “specialty drugs.”"
And its not just one drug, its several. So what happened to the old justification of the research and development costs are so high? There were no new development costs. Probably just marketing crap, once again.
Dec 9, 2019
My doctor appointment yesterday
Yesterday I saw my knee surgeon. He operated on my right knee, formerly known as my bad knee, 15 years ago. He and his physicians assistant are very nice and have a good sense of humor, which is the most important skill any medical professional should have. I admired his tie - a Jerry Garcia. His PA cracked jokes and made fun of my use of my bad knee to climb up on the table. She told me I was supposed to lead with the good knee.
They both poked and prodded my knee. Physical therapy has helped but not enough and it has been giving way on me.
I did ask which knee was my good knee now. The doctor said the left knee was catching up to the right one (which has two meniscal tears and a partially torn ACL). He thinks there might be a meniscal tear in the left one now to go with the osteoarthritis in both. And he thinks I am too young to need a knee replacement yet.
Before leaving the doctor said does it hurt when I push here on the back of my knee? As I levitated off the table in pain, he decided it was time for an MRI and to come back and see him after.
The last thing I need in the middle of moving is knee surgery.
They both poked and prodded my knee. Physical therapy has helped but not enough and it has been giving way on me.
I did ask which knee was my good knee now. The doctor said the left knee was catching up to the right one (which has two meniscal tears and a partially torn ACL). He thinks there might be a meniscal tear in the left one now to go with the osteoarthritis in both. And he thinks I am too young to need a knee replacement yet.
Before leaving the doctor said does it hurt when I push here on the back of my knee? As I levitated off the table in pain, he decided it was time for an MRI and to come back and see him after.
The last thing I need in the middle of moving is knee surgery.
Dec 3, 2019
We have nothing to fear but fear itself
I have learned a bit more about Jackie Collins and keeping her breast cancer quiet. It turns out she could feel a lump two years before she went to a doctor. She told People magazine shortly before she died that she was scared to tell her doctor because of her family medical history.
I think this is the old face of cancer. Cancer is not what will necessarily kill us these days. Cancer is becoming a chronic instead of a terminal disease. And many cases when diagnosed early cancer is not terminal.
The worst thing we can do is not tell our doctors about our health issues. If we hide from them, ignore them, or pretend they aren't there (guilty of all of these) for too long, the results will not be the most optimal.
And if we do try to pretend they aren't there, of course they will get worse and not better, unless its all in your head anyway. (Yes I am guilty of that as well.)
I think this is the old face of cancer. Cancer is not what will necessarily kill us these days. Cancer is becoming a chronic instead of a terminal disease. And many cases when diagnosed early cancer is not terminal.
The worst thing we can do is not tell our doctors about our health issues. If we hide from them, ignore them, or pretend they aren't there (guilty of all of these) for too long, the results will not be the most optimal.
And if we do try to pretend they aren't there, of course they will get worse and not better, unless its all in your head anyway. (Yes I am guilty of that as well.)
Dec 2, 2019
What would you do?
This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:
"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"
My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?
Personally I find the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.
"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"
My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?
Personally I find the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.
Nov 28, 2019
So I wasn't that smart
I admit it. I wasn't that smart. My husband gave me a hard time too. I probably deserved that but I did get him to cook dinner.
What did I do? Something bad to my knee again. So at the end of July, I fell and my knee bent sideways. I ended up at the doctor who took x-rays and ended up at the knee doctor who said nothing but sent me for PT and gave me a knee brace. I have been going to PT but stopped wearing my knee brace last week because its just too hot and uncomfortable and my knee has been feeling better.
Yesterday I was out on our side porch trying to move stuff around and pushed things sideways with my foot. DAMN. That made my knee bend sideways again. And its swollen and hurts again this morning.
So I wasn't that smart. I am going to skip the gym today and maybe wear my knee brace again (if I can find it). Damn. But I'm not going back to the doctor. And it was healing so nicely. Triple damn.
At least I can easily blame myself for this instead of being a politician and blaming the other party.
What did I do? Something bad to my knee again. So at the end of July, I fell and my knee bent sideways. I ended up at the doctor who took x-rays and ended up at the knee doctor who said nothing but sent me for PT and gave me a knee brace. I have been going to PT but stopped wearing my knee brace last week because its just too hot and uncomfortable and my knee has been feeling better.
Yesterday I was out on our side porch trying to move stuff around and pushed things sideways with my foot. DAMN. That made my knee bend sideways again. And its swollen and hurts again this morning.
So I wasn't that smart. I am going to skip the gym today and maybe wear my knee brace again (if I can find it). Damn. But I'm not going back to the doctor. And it was healing so nicely. Triple damn.
At least I can easily blame myself for this instead of being a politician and blaming the other party.
Nov 26, 2019
Get braced for Pinktober.
Please watch this video before you bite into your crispy KFC that arrived in a pink bucket.
Nov 25, 2019
Prescriptions and regulations and confusion
You might have guessed I take a few prescriptions these days. Actually I have a whole pile. Every weekend I sit down and fill our pill boxes for the week. My husband has one prescription and vitamins. I have a lot more.
I get my prescriptions from three places - the local pharmacy, the insurance company's mail order pharmacy, and the insurance company's specialty pharmacy. I got promoted to the specialty pharmacy this year for some reason. Its not that they really charge more, they just like to make my life more complicated.
What really annoys me about prescription medications are the stupid rules. The latest new rule is that I couldn't just call my pain management doctor for a refill on my break through pain meds (because the new cats hid the other bottle when they 'explored' the shelf in my closet), they had to make sure I had an upcoming appointment with the doctor. They even called me twice to make sure. (Then I explained how the cats hid my prescription which caused me to think that I had run out when I hadn't.)
The other rule that annoys me is that because of the 'opioid' crisis (which I recognize is a real and growing) problem, pharmacies want patients to have used up almost all their prescription before providing a refill. I know that pain medication use can lead to opioid abuse but not everyone.
I am picky about my prescription use. I use one of those lovely box a day pill box for years and have to take pills at three different times during the day (on an empty stomach, after eating, and before bed). If I was really good I would take some pills in the middle of the day as well but since I NEVER remember, that is not going to happen any time soon.
I also think about how often I take certain prescriptions which are prescribed 'as needed'. If I think I am taking them too often, I will take a minute to think how often I am taking them and why and if I need a doctor visit for a potential issue.
I feel I can manage my prescriptions myself and don't think I need any more rules to help me manage them. And about those prices? Well that's another story.
I get my prescriptions from three places - the local pharmacy, the insurance company's mail order pharmacy, and the insurance company's specialty pharmacy. I got promoted to the specialty pharmacy this year for some reason. Its not that they really charge more, they just like to make my life more complicated.
What really annoys me about prescription medications are the stupid rules. The latest new rule is that I couldn't just call my pain management doctor for a refill on my break through pain meds (because the new cats hid the other bottle when they 'explored' the shelf in my closet), they had to make sure I had an upcoming appointment with the doctor. They even called me twice to make sure. (Then I explained how the cats hid my prescription which caused me to think that I had run out when I hadn't.)
The other rule that annoys me is that because of the 'opioid' crisis (which I recognize is a real and growing) problem, pharmacies want patients to have used up almost all their prescription before providing a refill. I know that pain medication use can lead to opioid abuse but not everyone.
I am picky about my prescription use. I use one of those lovely box a day pill box for years and have to take pills at three different times during the day (on an empty stomach, after eating, and before bed). If I was really good I would take some pills in the middle of the day as well but since I NEVER remember, that is not going to happen any time soon.
I also think about how often I take certain prescriptions which are prescribed 'as needed'. If I think I am taking them too often, I will take a minute to think how often I am taking them and why and if I need a doctor visit for a potential issue.
I feel I can manage my prescriptions myself and don't think I need any more rules to help me manage them. And about those prices? Well that's another story.
Nov 21, 2019
Crowdfunding
So crowdfunding is a great concept. It helped get a friend's son injured in Thailand home in a first class seat when he was too injured to sit in a regular seat. It helped numerous independent movies get started. It can raise funds to help a family displaced by fire or other disaster.
But what about crowdfunding medical device design and start up? I would never have thought of that. I prefer my crowd funding to go to individuals and not to companies, especially overseas companies which makes me feel there is little or no recourse to get my money back or new product.
What I find a tad scary is companies are using crowd funding to fund the design and meet FDA approval requirements. So even if you think the concept is awesome, why are you prepaying for something that may never happen - and may end up with the 'As Seen on TV' label.
But now it seems companies are crowdfunding their new medical devices. Maybe it may make them get to market sooner but it doesn't speak to the company's financial stability. If you give them money to get off the ground, how are they going to continue to be solvent as the product develops? And what if they need to make multiple modifications to get approval? Will they continue to crowdfund? Go back and ask everyone for more money?
I kind of get the heebeejeebees on this one.
But what about crowdfunding medical device design and start up? I would never have thought of that. I prefer my crowd funding to go to individuals and not to companies, especially overseas companies which makes me feel there is little or no recourse to get my money back or new product.
What I find a tad scary is companies are using crowd funding to fund the design and meet FDA approval requirements. So even if you think the concept is awesome, why are you prepaying for something that may never happen - and may end up with the 'As Seen on TV' label.
But now it seems companies are crowdfunding their new medical devices. Maybe it may make them get to market sooner but it doesn't speak to the company's financial stability. If you give them money to get off the ground, how are they going to continue to be solvent as the product develops? And what if they need to make multiple modifications to get approval? Will they continue to crowdfund? Go back and ask everyone for more money?
I kind of get the heebeejeebees on this one.
Nov 19, 2019
The Wrong Approach to Pricing
Here is an example of the wrong approach to pricing medications. That really fancy expensive Hepatitis C drug, Sovaldi, is $1,000 per pill and $84,000 for the course of treatment and the price is justified because it saves on the cost of a liver transplant down the road and long term medical costs for the patient. WRONG IDEA!
It has now been revealed that the poor manufacturer, Gilead Sciences, which justified that price on the above reason, grossed $12.4 billion last year for the sales of Sovaldi alone. Sorry Gilead, I have absolutely no sympathy for you because of the revenue generated in the first year.
Yes, I understand the argument that the expensive drugs are justified because of the resulting reduced treatment costs for the patient in the long term and that the costs of and time to developing drugs is high and many possibilities are dumped after years of work. And that these drugs are developed for smaller and smaller potential patient markets for rarer ailments. But $12.4 billion? I think you got your money back and should cut the price significantly, maybe 1/10th of the current price.
So here is my proposal for new drug pricing: Look at your development costs of that drug that made it to market and the costs of the other drugs that eventually lead to the new drug but were dumped on the way and then price it so that your costs are recouped in five years, not one. And completely forget about the patient's long term cost savings in health costs. That is none of your business. Don't you remember HIPPA? Patient health issues are not your problem. You are providing a product that helps recover from it, just like an aspirin would relieve a headache.
Here's an example. Your current pricing method would allow restaurants to charge $3 for the tasty but bad for your juicy, fatty steak or prime rib and $80 for the healthy side salad because of the diner's potential long term health problems from eating the steak and ensuing cholesterol and other ailment costs.
The current pricing model leads to insurance companies deciding who should receive these new medications instead of doctors deciding what is best for their patients - which is the way medicine should be practiced.
Okay, this is all my opinion, to which I am entitled, but I really think pharma companies are doing it wrong.
It has now been revealed that the poor manufacturer, Gilead Sciences, which justified that price on the above reason, grossed $12.4 billion last year for the sales of Sovaldi alone. Sorry Gilead, I have absolutely no sympathy for you because of the revenue generated in the first year.
Yes, I understand the argument that the expensive drugs are justified because of the resulting reduced treatment costs for the patient in the long term and that the costs of and time to developing drugs is high and many possibilities are dumped after years of work. And that these drugs are developed for smaller and smaller potential patient markets for rarer ailments. But $12.4 billion? I think you got your money back and should cut the price significantly, maybe 1/10th of the current price.
So here is my proposal for new drug pricing: Look at your development costs of that drug that made it to market and the costs of the other drugs that eventually lead to the new drug but were dumped on the way and then price it so that your costs are recouped in five years, not one. And completely forget about the patient's long term cost savings in health costs. That is none of your business. Don't you remember HIPPA? Patient health issues are not your problem. You are providing a product that helps recover from it, just like an aspirin would relieve a headache.
Here's an example. Your current pricing method would allow restaurants to charge $3 for the tasty but bad for your juicy, fatty steak or prime rib and $80 for the healthy side salad because of the diner's potential long term health problems from eating the steak and ensuing cholesterol and other ailment costs.
The current pricing model leads to insurance companies deciding who should receive these new medications instead of doctors deciding what is best for their patients - which is the way medicine should be practiced.
Okay, this is all my opinion, to which I am entitled, but I really think pharma companies are doing it wrong.
Nov 18, 2019
Mutation Tracking
(I forgot to blog yesterday. Feel free to blame chemo brain, fibro fog or whatever.)
I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.
This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.
I like this kind of progress. It actually seems that doctors are beginning to use it.
I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.
This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.
I like this kind of progress. It actually seems that doctors are beginning to use it.
Nov 12, 2019
Deep thoughts in the middle of the night
Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.
So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.
Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might have less joint pains than before.
Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.
However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.
Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.
Maybe I'll get a good night's sleep tonight.
So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.
Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might have less joint pains than before.
Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.
However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.
Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.
Maybe I'll get a good night's sleep tonight.
Nov 11, 2019
A little too personal for me
Now big pharma has another 'bright idea'. They want to use fitbits in clinical trials to get more details on the impact of the medication and if it is working. However that wouldn't work for me. So it would be another way I would be excluded from potential clinical trials.
I am never eligible for clinical trials now anyway. I have too many ailments to be considered. It would be very difficult to tell the impact of a new medication because I have so many others.
Also, I can't wear fit bits. I cant put anything on my left arm because of lymphedema. This means no watches, no bracelets, and only my wedding ring, when my arm is feeling okay. And a fitbit? Absolutely not. I have problems wearing anything on my right arm because of my tennis elbow/bad wrist/everything else that is going on. No watches, bracelets either (I carry my phone to use instead of a watch).
This article talks about a 'fitbit' that would work as an adhesive patch. I am allergic to so many things these days. Last week's pain patch left a raised area on my chest from the adhesive even though I have been using anti itch lotion to help heal it. I am probably not the only person with multiple medical issues who would have issues when wearing one of these.
Finally, I think a fitbit is a bit intrusive. Its my body and I am not sure how comfortable I feel with someone monitoring my body from afar. I would want to be the one monitoring the results and then forwarding them to the pharma company.
So a 'bright' idea by someone who is healthy.It might be easier for them, but not necessarily easier for the patients.
I am never eligible for clinical trials now anyway. I have too many ailments to be considered. It would be very difficult to tell the impact of a new medication because I have so many others.
Also, I can't wear fit bits. I cant put anything on my left arm because of lymphedema. This means no watches, no bracelets, and only my wedding ring, when my arm is feeling okay. And a fitbit? Absolutely not. I have problems wearing anything on my right arm because of my tennis elbow/bad wrist/everything else that is going on. No watches, bracelets either (I carry my phone to use instead of a watch).
This article talks about a 'fitbit' that would work as an adhesive patch. I am allergic to so many things these days. Last week's pain patch left a raised area on my chest from the adhesive even though I have been using anti itch lotion to help heal it. I am probably not the only person with multiple medical issues who would have issues when wearing one of these.
Finally, I think a fitbit is a bit intrusive. Its my body and I am not sure how comfortable I feel with someone monitoring my body from afar. I would want to be the one monitoring the results and then forwarding them to the pharma company.
So a 'bright' idea by someone who is healthy.It might be easier for them, but not necessarily easier for the patients.
Nov 5, 2019
When all else fails
Go to the beach.
Yes that is my plan for the day, or at least the morning. I could be doing a thousand other things, packing, moving stuff, grocery shopping, cleaning up, and many more. I could even have gone to work. But I am opting to go to the beach.
Why you ask? Because I want to and I can. And there is a limit to what I can do on a given day. And its a birthday present to myself. Yes today is my birthday (and I am 37 again if you must know).
Back in my 20s I worked for a company which gave all full time employees a paid floating holiday to take on the birthday. Since then, I have always avoided working on my birthday. And today's weather forecast is for an upper 80s perfect summer day and going to the beach is recommended. So I am taking their advice.
I will contemplate life as I gaze out at the ocean. That is my prescription for life at its best.
As my health goes down my appreciation for living longer improves and incentivizes me to stop and 'smell the roses' so to speak.
Yes that is my plan for the day, or at least the morning. I could be doing a thousand other things, packing, moving stuff, grocery shopping, cleaning up, and many more. I could even have gone to work. But I am opting to go to the beach.
Why you ask? Because I want to and I can. And there is a limit to what I can do on a given day. And its a birthday present to myself. Yes today is my birthday (and I am 37 again if you must know).
Back in my 20s I worked for a company which gave all full time employees a paid floating holiday to take on the birthday. Since then, I have always avoided working on my birthday. And today's weather forecast is for an upper 80s perfect summer day and going to the beach is recommended. So I am taking their advice.
I will contemplate life as I gaze out at the ocean. That is my prescription for life at its best.
As my health goes down my appreciation for living longer improves and incentivizes me to stop and 'smell the roses' so to speak.
Nov 4, 2019
What if...
What if we just said f*ck it all and pretended were healthy? We might need to take our meds but what if we just went back to the way we were when we were healthy? I could go skiing, hiking, travel more, be thinner, and, most importantly, be happier.
Last night a friend was going to call me to chat and I fell asleep before she called (just after 8pm). Then of course I was up in the middle of the night thinking more deep thoughts, while feeling all my aches and pains, of course.
So what if all of us with multiple ailments said 'I'm sick of being sick and am going to be healthy again and do all the things we want.' I would love to go hiking again. I climbed the Grand Canyon once so I'm good there but it might be nice to hike more in the Sierra Nevadas or Rockies where I haven't done much hiking. An adventure trip to Scandinavia sounds like a lot of fun as well. Or just stay up late enough to have a social life? Is this asking too much?
Right now my body would protest but I am tired of listening to it and want to say 'f*ck it all' and run away and join the circus.
All of us unhealthy people have inner healthy (skinny and younger) people trying to get out. I want to let that person out and have fun again.
Last night a friend was going to call me to chat and I fell asleep before she called (just after 8pm). Then of course I was up in the middle of the night thinking more deep thoughts, while feeling all my aches and pains, of course.
So what if all of us with multiple ailments said 'I'm sick of being sick and am going to be healthy again and do all the things we want.' I would love to go hiking again. I climbed the Grand Canyon once so I'm good there but it might be nice to hike more in the Sierra Nevadas or Rockies where I haven't done much hiking. An adventure trip to Scandinavia sounds like a lot of fun as well. Or just stay up late enough to have a social life? Is this asking too much?
Right now my body would protest but I am tired of listening to it and want to say 'f*ck it all' and run away and join the circus.
All of us unhealthy people have inner healthy (skinny and younger) people trying to get out. I want to let that person out and have fun again.
Oct 29, 2019
Brilliance at work
In recent years there has been a huge controversy about Santa Monica CA high school being full of PCBs. The result has been multiple teachers and staff have been diagnosed with thyroid cancer. Remediation has taken place in the worst areas.
Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.
I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.
But brilliant idiots at work here.
Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.
I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.
But brilliant idiots at work here.
Oct 28, 2019
Support Group Please!
I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.
I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.
I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.
Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.
I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.
There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.
And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.
Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.
I'll keep trying. But I need to get through moving first.
I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.
I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.
Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.
I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.
There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.
And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.
Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.
I'll keep trying. But I need to get through moving first.
Oct 22, 2019
Stroke = Dog Tired
As many as 70% of stroke survivors complain about fatigue. Many stroke survivors think that fatigue is the worst thing caused by their stroke.
Stroke survivors should be four times as tired as everyone else, and I can prove it. Research shows that, when you compare survivors to age-matched “couch potatoes," the stroke survivors are in half as good cardiovascular health. Research also shows that most everything (i.e. walking, dressing, bathing etc.) takes twice as much energy after a stroke. Mathematically…
(Twice as much energy needed)
x (half as much energy available)
= (I need a nap)
The best thing you can do is stay in good cardiovascular and muscular shape. This means resistance training and cardio work. It may be counter-intuitive, but exercise increases energy. Other things that will help increase energy levels include
• Eating well
• drinking plenty of water
• sleeping well
"stroke recovery blog" "stroke blog" "stronger after stroke blog"
Oct 21, 2019
Walking in Rhythm
During stroke recovery "the good trains the bad." This is known as "bilateral training." In anyone, stroke or not, it is true "the good trains the bad." Here's an example: I'm a drummer. I'm right-hand dominant. If I try to tap my left hand as fast as I can it is not as fast as if I tap it alternately with the right dominant hand. Research has found that my left hand will not only be quicker, but it will be more accurate when I do the movement with my right hand. So I will be both faster and hit the drum where it should be hit.In stroke survivors bilateral training can be used to begin the recovery process. And it can be used to help stroke survivors with very little movement. Survivors with very little movement are sometimes called "lower-level." (This designation says nothing about the ability to think, only the ability to move.) The reason bilateral training works for lower-level stroke survivors is because the way bilateral training may work. And I say may, because nobody's really sure. Bilateral training may work because the two limbs communicate with each other even when that communication does not go through the brain. It's the reason infants step even before they can walk.
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| Click here: See a baby walk before it can walk |
It's why, in animal experiments, you can sever the spinal cord but the back legs will automatically go into walking pattern when they're put on a treadmill. It has to do with neural networks that are in the spinal cord. These networks are collectively called the central pattern generator (CPG). The CPG allows for limbs to communicate from the fingertips of one hand to the fingertips of the opposite hand (or "toe to toe"), right through the spinal cord.
In the arms and legs, bilateral training is relatively straightforward. In the arms you would have each arm trying to hit a target. You could have both hands attempting to alternate to hit a target. You could also have it set up so the "good "hand has to hit a target that much further away than the "bad" hand. You can also do this with a rhythm. The idea would be to use a metronome (click, click, click, rhythmically) or music where the drumbeat would dictate when each hand would have to meet the target.
In the lower extremity it similar: there is a rhythmic component. You would try to take exactly the same step length with the "good" and "bad" legs. A rhythmic component is added the same way as the arms: music, or a metronome is used to establish be in each footfall happens on each beat. It is thought that reestablishing the rhythmicity of gait will help reestablish the symmetry of gait.
As I said in a PT trade mag...
"A simple metronome either heard through headphones or carried by the therapist next to the stroke survivor can be used to promote the re-establishment of rhythmicity of gait. Plugging the ears using standard noise-reducing plugs can boost the volume of footfall to make that obvious to the survivor. The trick is then to match the footfall to the beat."
In the arms and legs, bilateral training is relatively straightforward. In the arms you would have each arm trying to hit a target. You could have both hands attempting to alternate to hit a target. You could also have it set up so the "good "hand has to hit a target that much further away than the "bad" hand. You can also do this with a rhythm. The idea would be to use a metronome (click, click, click, rhythmically) or music where the drumbeat would dictate when each hand would have to meet the target.
In the lower extremity it similar: there is a rhythmic component. You would try to take exactly the same step length with the "good" and "bad" legs. A rhythmic component is added the same way as the arms: music, or a metronome is used to establish be in each footfall happens on each beat. It is thought that reestablishing the rhythmicity of gait will help reestablish the symmetry of gait.
As I said in a PT trade mag...
"A simple metronome either heard through headphones or carried by the therapist next to the stroke survivor can be used to promote the re-establishment of rhythmicity of gait. Plugging the ears using standard noise-reducing plugs can boost the volume of footfall to make that obvious to the survivor. The trick is then to match the footfall to the beat."
By: "stroke recovery blog" "stroke blog"
Oct 15, 2019
What do doctors know?
Show me a neurologist or physiatrist who does not know that recovery can continue after a year and I'll show you someone who should lose their license.
In some ways doctors are forced by the Hippocratic Oath to lowball any estimate of recovery. If a doctor says you won't recover, and then you do, they can say “Great!” If a doctor says, "You can expect a great recovery” and you don't, they have done you harm.
In terms of having a doctor understand rehabilitation per se, it's probably not going to happen. The responsibility for rehabilitation is offloaded to therapists. The one exception to this may be physiatrists. However, although they may be very aware of various recovery options, they are not trained in rehabilitation techniques.
Of course, MDs can be a driving force towards recovery. Each clinician (MD, therapist) has a unique role to play. Some MDs are not very well versed in all things recovery. If you want to find aggressive MDs and therapists, click this link >>> By: "stroke recovery blog" "stroke blog" "stronger after stroke blog"
Oct 14, 2019
Reading to Recover
Imagine you have two people; one person has an absolutely stellar sense of direction. They never seem to get lost. The other person has no sense direction at all. They get lost in their own neighborhood. Let's say the “neighborhood looser” buys a GPS. Now who has a better sense of direction?
Imagine you have two therapists; one therapist is very smart, intuitive, conscientious, and caring. Everyone says they are a great therapist. The other therapist is sloppy, snotty and disorganized. Let's say snotty therapist reads a lot of stroke recovery research and implements what he reads. Now who is the better therapist?
By: "stroke recovery blog" "stroke blog" "stronger after stroke blog"
Oct 8, 2019
Simple. Brain. Recovery. Game.
Stroke recovery involves neuroplasticity. You can slice it and you can dice it but the bottom line always comes back to stroke as brain injury -- and how to overcome it. If you can't get the brain to reorganize around the injury, recovery is toast.
• Spasticity: caused by brain damage.
• Inability to feel the movement: caused by brain damage.
• Unilateral neglect (decreased attention to the “bad” side): caused by brain damage.
• Lack of control over the affected arm and leg: caused by brain damage.
• Aphasia: caused by brain damage
• Vision problems: caused by brain damage
• And much more!: caused by brain damage
So the answer to the question “… how might movement problems be overcome?” is simple: Rewire your brain.
And it is good that it is simple because only the stroke survivor can do it. A therapist could have a double major physical and occupational therapist PhD from Harvard school of Super Duper Rehab summa cum laude with postdoctoral training as a Rhodes Scholar and they still can't do it for you. You know the old Smokey the Bear poster: "Only you can prevent forest fires"? For stroke survivors the poster should say: "Only you can drive neuroplastic change". Fortunately, the rules for rewiring your brain are very, very simple. Unfortunately, rewiring takes a tremendous amount of hard work.
And what does it take? Repetitive practice.
"stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog"
• Spasticity: caused by brain damage.
• Inability to feel the movement: caused by brain damage.
• Unilateral neglect (decreased attention to the “bad” side): caused by brain damage.
• Lack of control over the affected arm and leg: caused by brain damage.
• Aphasia: caused by brain damage
• Vision problems: caused by brain damage
• And much more!: caused by brain damage
So the answer to the question “… how might movement problems be overcome?” is simple: Rewire your brain.
And it is good that it is simple because only the stroke survivor can do it. A therapist could have a double major physical and occupational therapist PhD from Harvard school of Super Duper Rehab summa cum laude with postdoctoral training as a Rhodes Scholar and they still can't do it for you. You know the old Smokey the Bear poster: "Only you can prevent forest fires"? For stroke survivors the poster should say: "Only you can drive neuroplastic change". Fortunately, the rules for rewiring your brain are very, very simple. Unfortunately, rewiring takes a tremendous amount of hard work.
And what does it take? Repetitive practice.
 | |
| Repetitive practice is boring. So try spicing up with a video game yay! |
"stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog" "stroke recovery blog"
Oct 7, 2019
When all you have is a hammer everything looks like a nail
I got an email from an author the other day. He’s written a book about stroke recovery. He said that he’d heard that I did “...not like presenting other peoples' work as helpful for stroke survivors." I explained to him my position this way:
I work in rehab research; have since the 90's. All of that research has been stroke-specific. One of the things I've learned is that clinicians had made the mistake over and over and over (for decades) of buying into completely ineffective treatment options. They did this for 2 reasons:
1. The treatment had/has a charismatic leader
2. Clinicians in rehab don't typically read research.
I actually promote (when appropriate) a bunch of people and ideas. But anything endorsed is evidenced based and what that means is very specific: Has the treatment option reached meta-analysis and did that meta-analysis show efficacy? If it has and it does I'm all in.
If not, I let people know.
What I find from survivors is that they want us to hash this stuff out. They want us to have these discussions and not just stick with the same old because it’s what we feel comfortable.
I work in rehab research; have since the 90's. All of that research has been stroke-specific. One of the things I've learned is that clinicians had made the mistake over and over and over (for decades) of buying into completely ineffective treatment options. They did this for 2 reasons:
1. The treatment had/has a charismatic leader
2. Clinicians in rehab don't typically read research.
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So even if large studies came out and say "Those things don't work" clinicians just kept/keep on doing (and promoting, and selling books about, and teaching) them. And then there are categories of "treatments" that have no research (standardized, controlled trials) at all supporting them. So in my talks (I do many) I start by saying "Most of what has been used for stroke recovery is ineffective or untested. Here's what we think we know…” And most clinitians get it. They're pros. They want better tools.
I actually promote (when appropriate) a bunch of people and ideas. But anything endorsed is evidenced based and what that means is very specific: Has the treatment option reached meta-analysis and did that meta-analysis show efficacy? If it has and it does I'm all in.
If not, I let people know.
What I find from survivors is that they want us to hash this stuff out. They want us to have these discussions and not just stick with the same old because it’s what we feel comfortable.
Oct 3, 2019
E-Stim. If dude can do it, so can you.
Electrical stimulation after stroke is the single most important modality there is for recovery. A modality is...application of something therapeutic like a hot pack or cold gel or...e-stim. Part of the reason e-stim is so important is that it does so many different things.
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Drunk smoking guys use e-stim for fun! |
E-stim does so much that its lack of use clinically for survivors has flummoxed me for years. The reasons given for not doing it clinically tend to be of the "Its too complex to set up" variety. "It’s too expensive." is another thing. Some e-stim machine are expensive. But even the cheap gizmos can do the job. Most of the reason it’s not done is because no one wants to figure out the machine.
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| Jesse says: E-stim is not just for drunk folks and kids! |
Enter my 10 year old son, Jesse. I have a lot of e-stim machines stored in my basement. I've accumulated them over time in various ways. And boys will be boys and boys (and their friends) will go into the basement and put electrodes all over themselves and turn up the stim and see what pops. And they figure the machine out. Because e-stim works like this: Put on the electrodes (they stick to your skin) and turn up the stim. And see what happens. And that’s it.
And yet many clinicians shy away from e-stim. They shy away from something that can do everything from help recovery of sensation, to stretching to building muscle to starting the neuroplastic process. So talk to 'em. And if they have any questions, tell 'em to email me.
Note: There are some serious contraindications to doing estim in some folks. i.e., they can mess up pacemakers and other electronic devices. So always ask your doc first!
Oct 1, 2019
The perfect time to have a stroke?
I'd argue that the "best" age to have a stroke is 27. The entire brain is fully wired (the frontal lobe wires in the 26th year). You're young enough to undertake the rigors of recovery (recovery is statistically better the younger you are). But you're old enough to have your brain wired "normally" (recovery in children is often a mixed bag because the brain is not yet fully developed).
Sep 30, 2019
Will and imagination
I do a ton of talks on stroke recovery. I come from the world of research. So my perspective is a bit different to the rehab clinicians I talk to. I do my best to ease them into the world of research. I explain where they can find leading edge stroke rehab info for themselves. I describe where we are in researching stroke recovery (not very far I’m afraid). I explain how the stuff from research can be used with their patients.
And there’s the rub. Therapists and other folks in rehab sometimes have a bit of difficulty imagining how to transfer the research to their practice.
"I'm in acute care (or skilled nursing, or an outpatient clinic, or in home care, or in long term care, etc.). I can't implement this stuff. It takes too much time (or we don't have the equipment, or don't know how to bill for it, or nursing won't follow through, etc.). This stuff can't be used on my patients because they're not motivated enough (or have too many other medical problems, or are too "low level", or are too old, etc.)"
The core concepts of relearning how to move after stroke are simple. These concepts don’t have to be done clinically the way they’re done in research. In fact, they are often more effective in the clinic. They may be more effective because clinicians can change the treatment to fit individual survivors. Research involves a one-size-fits-all implementation. Therapists can add and subtract, slow down and speed up, skip or add more treatments. In research all those screw up consistency.
Some therapists have no problem with implementing this stuff. Some go well beyond what I suggest. For instance, they may dovetail suggested treatment options in a mix that is beyond anything researched. (Note to clinicians who do this: make sure you use valid and reliable outcome measures to prove to yourself that these things work.)
Whats the difference between those who can and those who can't?
Will and imagination.
And there’s the rub. Therapists and other folks in rehab sometimes have a bit of difficulty imagining how to transfer the research to their practice.
"I'm in acute care (or skilled nursing, or an outpatient clinic, or in home care, or in long term care, etc.). I can't implement this stuff. It takes too much time (or we don't have the equipment, or don't know how to bill for it, or nursing won't follow through, etc.). This stuff can't be used on my patients because they're not motivated enough (or have too many other medical problems, or are too "low level", or are too old, etc.)"
The core concepts of relearning how to move after stroke are simple. These concepts don’t have to be done clinically the way they’re done in research. In fact, they are often more effective in the clinic. They may be more effective because clinicians can change the treatment to fit individual survivors. Research involves a one-size-fits-all implementation. Therapists can add and subtract, slow down and speed up, skip or add more treatments. In research all those screw up consistency.
Some therapists have no problem with implementing this stuff. Some go well beyond what I suggest. For instance, they may dovetail suggested treatment options in a mix that is beyond anything researched. (Note to clinicians who do this: make sure you use valid and reliable outcome measures to prove to yourself that these things work.)
Whats the difference between those who can and those who can't?
Will and imagination.
Sep 23, 2019
A test that predicts when survivors may die
A test of mental ability after stroke can predict how long a survivor will live (Find the study here.)
Poor performance on these tests can predict mortality in stroke survivors, a full decade before death. Previous tests have shown a link between heart disease and dementia after stroke and mortality. This is the first to show small amounts of cognitive decline correlating to mortality.
Here are the tests that they used.
Poor performance on these tests can predict mortality in stroke survivors, a full decade before death. Previous tests have shown a link between heart disease and dementia after stroke and mortality. This is the first to show small amounts of cognitive decline correlating to mortality.
Here are the tests that they used.
The longer it takes to do the tests the more "impaired psychomotor speed." Participants that were the slowest third of the group for both tests were more likely to die.
In this study, the mean result for TMT A was 47 seconds and for TMT B, 119 seconds.
Also a decline in mental function before a stroke can be an indicator of an impending stroke.
In this study, the mean result for TMT A was 47 seconds and for TMT B, 119 seconds.
Also a decline in mental function before a stroke can be an indicator of an impending stroke.
Sep 17, 2019
What else can I do?
There is an inaccuracy in a recent Amazon review of Stronger After Stroke that I must correct...
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| BULL |
Here is part of the review:
"I have not read the book, but one of the reasons my father in law suffered a stroke was because he's blood pressure was too high due to alcohol consumption. In this book it says it's ok to have 4 oz of alcohol a day so my father in law has started drinking again. So I'm hoping I didn't start up the drinking with him by giving him this book."
Actually, there is no mention of alcohol at all, any place in the book. But the author of the review hadn't read the book, so how would they know?
Here's a part of the story that may be interesting only to me: I contacted Amazon, asking them to consider taking the review down. Amazon will only take down a review "If it in violation of one of Amazon's posted guidelines." One of posted guidelines is: "Customer reviews should be relevant to the product in question." The reviewer is clearly reviewing hearsay, not a book. In any case, I was amazed that Amazon has declined to take the review down. I'm a huge fan of Amazon! I'm disappointed.
I'm not an advocate of drinking after stroke.
Thank you.S
Sep 16, 2019
Demanding Repetition
That's it. Repetitive practice of the movement or sound or walking or skill or whatever. Of course repetitive practice has the habit of doing two things: 1) causing people to repeat things that they can do pretty well, over and over. 2) Plateau. People plateau (don't get any better) because they keep doing what they can do pretty well over and over.
That's where demanding comes in. Repeatedly practice the skill in a way that "nips at the edges" of your current ability.
Repetitive without demanding and progress will slow to a crawl.
Demanding without enough repetition will halt progress."the stroke blog" "The stroke recovery blog"
Sep 12, 2019
Does "X" aid recovery after stroke?
What works and what doesn't work to help recover after stroke? Research has revealed three broad categories:
1. It works
2. It doesn't work
3. We don't know yet
There is tons we don't know about stroke recovery. Stroke recovery is a million different puzzle pieces, with no picture on the front of the box to help out. But there are some resources to help answer some of the questions (at least)...
There is one website that answers, in layman's terms, what works and what doesn't work. Although the list is far from complete, it's a start. Thank you Canada!
1. It works
2. It doesn't work
3. We don't know yet
There is tons we don't know about stroke recovery. Stroke recovery is a million different puzzle pieces, with no picture on the front of the box to help out. But there are some resources to help answer some of the questions (at least)...
There is one website that answers, in layman's terms, what works and what doesn't work. Although the list is far from complete, it's a start. Thank you Canada!
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stroke blogs
Sep 10, 2019
Video games+Tennis balls+ Anger=Recovery
A great article in the British newspaper The Telegraph. The article is by a stroke survivor who recovered well after an ischemic (block) stroke. He's hit on some very core ideas. Here are the most important points (comments in red are mine):
- "...nobody in the hospital was going to tell me how to get better ..."
- "I had to get out of hospital and cure myself."
- "...found that major strides had been made in America in treating stroke victims." (USA! USA! USA!)
- "Research there showed that damaged neural pathways could be re-routed" (Taub! Taub! Taub!)
- "The key was speed. After three or four weeks, the brain seemed to start a permanent shut-down on these pathways." Not true. But the guy is a "High Master" which I think is a principal. He can be forgiven.
- "I decided to bounce a tennis ball 2,000 times a day off the kitchen floor, missed catches not counting." Obsessive repetitive practice. I love it.
- "The first day it took four hours to reach the target." Ambitious repetitive practice.
- "...wrote out the alphabet, one line per letter, for two hours a day." Brilliant, I think the British say.
- "I vowed to (type) 10 pages a day, typing out my corrections on my latest book with one finger. The first 10 pages took three days." I love this guy.
- "I decided to recite the poems of Andrew Marvell for two hours a day..." Fighting aphasia by using something meaningful. This guy may have missed his calling: neuroscience.
- "I marched up and down the stripes on the lawn for two hours a day." Very Monty Python.
- To reestablish I coordination he used "a computer game flying a virtual F15 jet - or, in my case, crashing it thousands of times on the runway before finally landing it - after 40 hours' "flying" time." I think this is great. The idea of doing something fun to recover. When else in the middle of somebody's career are they allowed to play 40 hours of any game?
- "I came close to giving up the grind of rehab. But by choosing tasks like writing the alphabet or counting how many times I could walk down the lawn without crossing a stripe, I could monitor my own progress." Okay, two things: close to giving up. But not giving up. And second: being able to "monitor progress" is essential to recovery because if you don't monitor things closely how do you know if you are getting any better?
- "The difference between success and failure was...a deep anger that I was not offered more help to start with" You know, even Gandhi was not against anger. He just said you should use it wisely because it's very powerful. I'd say using anger to recover from stroke is using anger wisely.
- Gandhi on Anger "I have learned through bitter experience the one supreme lesson to conserve my anger, and as heat conserved is transmuted into energy, even so our anger controlled can be transmuted into a power which can move the world."
Find the article here.
Sep 9, 2019
Stroke Recovery. Are You Up for the Challenge?
Keeping it challenging...
Whatever is practiced, it must be challenging. In research, an 80-percent threshold is generally used. For instance, if a stroke survivor can successfully turn the pages in a magazine 80 percent of the time, the challenge can be increased by turning the pages of a newspaper. Since turning pages of newspaper requires increased excursion of the shoulder and elbow, the increased AROM will "trickle down" to easier tasks such as turning pages in books and magazines, card flipping and laundry folding.
What is usually done
Compensation (learning to "get by" with the "good" side). As "Dean's" puts it: Compensation being doing whatever is necessary to accomplish a goal. Recovery is using the muscles as intended to accomplish the same goal. Insurance wants you to use compensation whenever possible because it is faster and cheaper.
Faster and cheaper
Faster and cheaper is good because its faster and cheaper. You could go to a State University. Or you could get a degree from a degree mill. You could make a a salad, but you could get the same amount of calories from a pop tart. But even as fast and cheap as they are, you'll still feel gypped.
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Sep 5, 2019
AFO: You can check out anytime you like, but can you ever leave?
It's easy to walk into an AFO. It's hard to walk out.
In any case, I get a lot of e-mails about this subject. Here's an example:
I wear a big brace on my right leg. I am paralyzed on the right side. I walk with a one-point cane. I walk with an open hinge (articulating) AFO.
They opened the hinges on my old brace several years ago. I walk around my apartment with the old one. But when I go out I use the bigger brace which isn't open at hinges.
I read on Deans' Stroke Musings that you recommend the Air Cast. Which one for stroke survivor do you like? They have a lot of different ones on their website.
Here's my answer:
First of all, the disclaimer:
(Warning: ENDING THE USE OF AN AFO CAN LEAD TO FALLS AND INJURIES.
Never discontinue the use of an orthotic without first consulting the appropriate health care provider. Then call your doctor. Then have your doc talk to any other providers as needed. Then discuss it some more. Thank you.)
Wear a brace on the ankle that satisfies two things:
1. Keeps you safe
2. Challenges* you
*Challenge: Walking naturally challenges you to lift your foot. If you can lift your foot up and down to stay safe (not trip) then you might consider questioning an orthotic that helps lift the foot.
Gradation would usually be something like this:
1. Rigid AFO
2. Articulating AFO (where the ankle joint moves just a little bit)
3. A stirrup (stabilizes both sides the ankle but allows the ankle to move up and down freely)
4. A high top shoe (like a basketball shoe)
5. Nothing
Often the manufacturers are the best people to ask specific questions. One of the advertisers on this blog X-STRAP (see link on the sidebar) has a variety of products. Some help bring the ankle up during gait, others support the ankle. The stirrup is usually associated with one particular company: AirCast.
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Sep 3, 2019
Know a good doc or therapist?
I get this all the time:
"How does one go about looking for a neurologist or physiatrist or therapist who is familiar with the practices outlined in your book?"
You'll notice a link on the right column. Or you can click here. Either way, if you live in the USA, you'll find resources to help find aggressive healthcare providers for your recovery team.
Then next questions is "Where do I find an OT or PT or speech therapist who knows?" You find a resource for that too.