Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.

Medical update

I've been meaning to post for a week about the latest news on life in Cancer Land.



The skin metastasis on my scalp grew and became very ugly during my first round of Ibrance. I haven't seen Dr G since before Passover but did go to my dermatologist. He biopsied a sample, cleaned up the yucky area, gave me antibiotic goop and sterile bandages. The site remains clean and much less grotesque although still seems to me about 50% larger.



At the same time a fistula developed near my port access area. This slow growing opening has been around for some time but is now an open wound. The interventional radiology PA recommended removing my port. That's scheduled for Friday.



Last, the ONJ area in my mouth began to hurt again. If other parts of my body show signs of infection, it's no surprise that my mouth would act up. The dentist prescribed ten days of antibiotics.



That's more than enough for one post. Additional stuff coming soon.

Pfft!

Great Question!

I get a lot of questions about stroke recovery and try to answer the best I can given the fact that I have rarely met the folks I'm giving advice to. Here is an email I got recently. Hope the following exchange helps some folks!

Dear Mr. Levine, 

In March of 2014 my friend had a stroke. She is 59, very gifted and motivated. She has received physical and occupational therapy from local facilities since then and has made a lot of improvement. We have obtained a Neuromove unit and recently got a Walkaide device for her foot, but it is looking like we are reaching the limit of local expertise to help her push forward. She has been very motivated up to now, but upon not satisfactorily acheiving some of her 6 month goals, has hit a rough patch. So we are just searching for anything that might spur her on at this point. We have looked into constraint induced programs locally, but not impressed with what we have found. Also, she is very reluctant to undergo the frustration she thinks this therapy will be. We don't want to encourage her to do something difficult without knowing it has a good chance of helping her. I am writing to you because your book has been a huge help in "coaching" her, and I thought you might know someone in New England who we could go to for help.

"Joan"

Hi "Joan,"

A couple quick things; it looks like you're doing the right thing re: NeuroMove, and the walkaid. I'm a pretty big fan of both of those. 

Secondly, if she is plateauing, that's to be expected. The general philosophy is that once the plateau has taken place, gains can continue to be made, but of course, the gains are much more conservative given an equal amount of work.

Sometimes it helps to work towards specific goals. For instance, your friend may walk great with the walkaid, but may not walk fast enough to make getting around outside useful. So increasing the speed of walking would be the goal. In fact, quickness can generally be used as a goal; upper body dressing, cooking a specific dish, making a bed etc. can all be goals were speed is worked on.

In terms of finding a place in New England, of course there are quite a few good ones. Find the link on this blog on the right hand column [-->] you'll see something that says "FIND A STROKE CENTER NEAR YOU?" Click on that, put in your ZIP Code, and all the hospitals that are supposed to be good at stroke recovery will come up- they should be able to direct you to the best rehab options. There's other links on there (on the right side column [-->]) to help you look for aggressive physiatry and other rehab clinicians.

One last thing, and this is a tough one… But your friend may be simply at the end of recovery. This is one thing I struggled with in my book… And in fact had somebody else write it; Kathy Spencer. I'll attach and image of her quote to this email (bottom of this blog entry). And she talks about the point at which living your life gets in the way of recovery. At some point there's not enough justification for the hard work given the amount of gains that are made. It's a decision that everybody has to make for themselves.

Have you looked into the saeboflex? It may be appropriate.

But, again,there's no magic algorithm here, it's just more work.

Please let me know if you have any other comments, insights, etc.

Best,     
Pete

(CLICK ON TEXT BELOW TO MAKE IT LARGER!)

The Brain Science Podcast: The brain brought to you by the people who actually study it.

First, a bit of a acknowledgement: 

Ginger Campbell wrote a very nice review of my book which

Ginger Campbell, MD

ended up on the book's cover. I asked her to write it because I love her podcast; The Brain Science Podcast. 

The podcast, which is usually in interview form, is an incredible resource for anyone interested in the brain. Ginger Campbell, the creator/director, interviews lions of neuroscience at the top of their game. I rarely find myself lost in her question and answer tête-à-tête. She strikes the perfect middle ground where you understand what they're talking about but it's not simplified into mush.

In the negotiation to get her to write a blurb for my book, she floated the idea of me being interviewed on the Brain Science Podcast, to which I spat my coffee all over the computer screen. Sure, interview a whole bunch of people who are teetering on the verge of a Nobel, and then interview me. I've decided I'm a "science communicator." And in this regard me and Dr. Campbell have a lot in common. She's not a neuroscientist, she's not a neurologist, as I understand it she's an ER MD (see her update to this, below). So it's been sheer curiosity that has driven her to the brain. And we have that in common. Every other organ in the body is known-- right down to its molecular structure, we know what's going on. But the brain is not only unknown, it's really unknown. 

Stroke has been the fascination of scientists since Hippocrates. Dr. Campbell has done several episodes on stroke but almost all the episodes has something relatable to stroke.

Please note, there is a link to the podcast on the right hand column (→) 

Here is Dr. Campbell's input on this entry...

"After spending over 20 years as an emergency physician I am now doing a Fellowship in Hospice and Palliative Care Medicine at the University of Alabama School of Medicine.

However, I do need to clarify the difference between Free and Premium episodes, which I hope you will pass on to your readers.

The 25 most recent episodes are ALWAYS free. This represents about 2 years of content. Free episodes are available in iTunes, Stitcher, and most other podcasting apps.

There is some limited Premium Content in iTunes, but this is from 2010 when I was experimenting with making Premium versions of new episodes. (I also had CD's of these but they didn't sell so I quit after 3 episodes (65-67).

The Premium subscription ($5/month) gives people unlimited to all the back episodes PLUS episode transcripts. Details at http://brainsciencepodcast.com/premium. I also offer all these episodes and transcripts for $1 each. These have been more popular than expected.

Access to the Premium content is via a special webpage and/or via the mobile APP, which is now free.

I have gotten a few complaints about putting some of my content behind a Pay wall, but many more listeners appreciate having an easy way to support my work. I don't make that much but since I took a 50% paycut to pursue my Fellowship in Palliative Medicine, every little bit helps!

One other thing: even the premium episodes contain Audible ads because there is no easy way to remove this."