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.
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Nov 4, 2019
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.
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.
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"