An invitation to be a part of a new research study has arrived. Mark P. Jensen at the University of Washington Department of Rehabilitation Medicine was principle investigator for the last study in which I participated and is the same for the new one titled “Survey of Individuals Aging with Disabilities.” Conveniently, the invitation arrives on my 65th birthday. Dr. Jensen’s last study on disability was hugely instrumental in my life. The focus of that one was the effects of hypnosis on chronic pain in persons with disabilities. The selected population included persons with muscular dystrophy, multiple sclerosis, spinal cord injury and post-polio syndrome. The intervention consisted of 10 sessions of hypnotherapy in a two week period. I found it most interesting that attention was paid equally to both the level of pain and the quantification of how much the pain “bothered” the subject. The “bother” of the pain really speaks to quality of life and has quite a bearing on levels of depression, which were also investigated in the subject population.
One never knows with research what all the contributing factors might be but I do know that before participating in the study I was having a very difficult time with walking, balancing, fatigue and depression. My partner was moving to London for a year and I wanted very much to go with her but was afraid that I wouldn’t be able to handle the challenge. At the end of the intervention, I was definitely having less pain, less fatigue and was bothered by the pain I did have a great deal less. I was using my cane much less and was able to go to London for several months and have a very good time. I continued to work with the tapes of a couple of the sessions for a period of several years and will still occasionally pull out the tapes. Whatever factors may have been involved, I credit the hypnotic analgesia with a significant “remission” in terms of the degenerative nature of PPS. I figure I got another 5 years of good quality out of the study!
Dr. Jensen’s new study is of the same population except that “post polio syndrome” has a new name. It is now called “late effects of polio” or LEP. That is an interesting development because there seems to be a process by which a condition or disease gains legitimacy. As many polio survivors know, the first stage of relationship between the medical profession and what we now call LEP is denial. It simply doesn’t exist. There is really “nothing wrong” with you; or what is wrong is a figment of your imagination. Enough years go by, enough patients have the same complaints and the same history and a “syndrome” is named. More years go by while more doctors and insurance and social security gatekeepers try to continue the denial. Eventually, all the powers that be recognize a distinct set of symptoms and the thing gains a name that doesn’t include the word “syndrome.”
The study of which I am now informed doesn’t appear to have any intervention but is rather a series of surveys over a 4 year period. I will gladly participate, if nothing else, in gratitude for the benefits I received from the last study. The results should be very interesting indeed. The whole question of aging is becoming more interesting to me. The fact that it can be so hard to sort out the difference between which difficulties are related to post polio and which are normal aging makes it more so.
This afternoon I will see my new naturopathic physician to discuss the results of the adrenal gland assessment she ordered a couple of weeks ago. I am anxious to find out what she has learned and what she might be able to recommend for me. I’ve had a challenging two week period with lots of family visits and more and different activities than normal going on. I love the opportunities to be with my kids and grandkids and I am thrilled that number 2 son has graduated from Nursing School but I am also very, very tired! I’ve needed to use my cane several times of late and the decrease in what I have been able to do with my hands and arms is frustrating. At least I can sort out that my increased pain and decreased ability are not related to depression or weight gain. That is something!

Still Learning!

Can you tell I am still learning how to blog? The picture is indeed my favorite iris, Sweeter Than Wine, but I don't know how to write a caption and I didn't mean to post two copies of it.

This really happened. I woke up a few weeks ago with a very clear conviction that I needed to find a naturopath. I've never been to a naturopath in all these years of butting heads with "regular" medicine. I've tried acupuncture (helpful for a while) and therapeutic touch (helpful only if someone who really loves you does it), meditation and hypnosis. But not a naturopath. I'm not sure, but I think the reason is that I was put off by the cost. Not that a naturopath is typically more expensive than an M.D., but until recently, having their fees covered by insurance was usually not an option. Then there are all those supplements and homeopathic "remedies" and other unkowns. Whatever the reasons, I had no idea where to find a naturopath but I was pretty clear I needed to do exactly that.

As it happened, that is the morning two friends stopped by on their way out of town and I asked them if either one knew a naturopath. Jenny offered that indeed she did and it just so happened that this wonderful practitioner was having an Open House at her office the following day. Perfect! It was a lovely Open House and the doctor was happy to chat with me. Did she know much about post-polio? Was she interested in it? Not a great deal but yes, she'd be intersted in learning more. The conversation boiled down to my description of a recent episode of what I have termed a "massive muscle Shut-down" and my discomfort with the conclusion determined by the M.D. I saw. That conclusion was that fainting happens sometimes for unknown reasons and the muscle fatigue that rendered me non-functional in most of my voluntary muscles for several hours after I had regained conciousness must be post-polio. Dr. DiGasparis had a different perspective. There had to be a reason for the fainting and there had to be a mechanism that linked the profound muscle malfunction to post-polio -if indeed that malfunction was caused by this nebulous condition. I found myself feeling hopeful and excited. Maybe there would be some answers that would make me feel more comfortable about the upcoming trip to England. Since the episode mentioned above was the third and most severe round of "muscle shut-down" and occurred on an airplane ready for take-off and since it ended up in a very expensive ambulance ride to visit to avery expensive emergency room, I have been feeling a little timid about getting on a plane alone for an 8 hour flight in a couple of months.

So here's a question. Are other Post-Polio Land dwellers experiencing acute "massive muscle-shutdowns" and what do you suppose the mechanism is? Or... any other ideas of what may be going on? Meanwhile, I've had an initial assessment visit with Dr. DiGasparis which was amazingly different from any assessment I've ever had in the past.

The weather has been truly awesome. (That poor word has been terribly abused and flung around carelessly by the younger set the last number of years but it's still a good word when used appropriately.) What it means here in Seattle to me is that it is the time to garden. The humble, tiny blue forget-me-nots are fading. The rhodies have made their appearance and are on their way stage left for a stunning exit while the irises come trouping across the stages of both front and back gardens in an extravaganza of color. I'm not sure who put those dazzling yellow giants front and center where they have no choice but to be seen against the wild raspberry color of our house but the effect is less than ideal. On the other hand, they look lovely with the nearby purples and my favorite all time iris, "Sweeter Than Wine" is in beautiful bloom so all is well. I'm still working on the concept of the word "win" having a different meaning.

Definition of "Win"

In the last landing, I said I like a challenge but that I wanted to win. And I decided it was time for new definitions, starting with "win." How about this? How about to win is to be satisfied with my best? And while I'm at it, a little re-framing of the challenge is in order. I had been thinking of the challenge with post polio being to do almost every thing I did before. I mentioned that elusive line between getting enough exercise and over-doing it. The one that is very skinny and moves around, remember? So the re-framing of the challenge is simply to find the line on any given day. And "winning" is hanging out on the line. Obvious and simple but what can I say? I can be pretty dense when it comes to dealing with post polio.

The First Landing

Most blogs I know are written by people who are out there in the world having great adventures. Their family and friends want to hear all the details. I don't know that anyone wants to hear the details of my current adventure and I could just continue to write in my journal. But on the odd chance that others may be along for the ride and want to compare notes, or have suggestions of detours I may want to take - this might be a good idea. PPS stands for Post-Polio Syndrome or post polio survival if you prefer. I don't like either term for many reasons, the most important of which is that I dislike the word polio intensely.

Where to begin? I suppose a bit of history would be appropriate. Polio found me when I was 4 months old, living my newborn bliss in Rochester, N. Y. in 1944. After the acute phase I took on the challenge of a Dennis Brown brace, a worthy opponent consisting of two tiny shoes attached to a metal bar between. I knocked it to oblivion. I learned to walk in it and then graduated to a short right leg brace most remembered for its weight. It consisted of heavy metal bars and good sturdy leather. Then I forgot about polio. Life was good and normal until the 1980's when I began to notice muscle fatigue in my arms with the simple acts of brushing my hair or carrying a bag of groceries. Eventually, I accepted the diagnosis of post-polio syndrome, went back into a leg brace, retired from my Nursing career and had a brief affair with a motorized scooter.

Now I live in the Land of Post Polio. It's a good place in which to temper the mind and spirit and indulge in philosphy - at least on a good day. On a bad day, of which there are many, it is a place from which to scream at the heavens that this is simply too hard. And, by the way, it isn't fair! Except that you don't scream from here. The latest I've heard on how to handle the challenge of post polio is to find that elusive line between exercising the muscles enough to keep them useful and over-taxing them causing more damage to the already compromised system. Have you noticed how skinny that line is? And it moves! One day 30 minutes of gardening may be workable, another day 5 minutes gives a clear signal that I have overshot the mark.
I might add, however, that I do not really follow the literature on how to treat post-polio. One reason is that I have significant argument with Western modern medicine, another probably has to do with denial. So perhaps one of my fellow travelers has learned something new on the subject.

Spring is calling and it is absolutely beautiful here in the Northwest. There are millions of weeds to pull, shovel loads of compost to move, new plants to nestle into place and I want to do it all! I love being out where I can mingle with the birds who sit in the branches discussing the findings of new berries on bushes or the lastest refill of seeds in the feeder. I love strutting around with my gardener's belt weighed down by pruners and tools of weed destruction! But right now, my hands are my biggest challenge. Have you ever noticed how hard it is to get through a simple day - to say nothing of the whole business of gardening - without using your hands? It's the pincer grasp that is most painful. It sends shock waves of pain through my thumbs. Not pleasant at all.Sometimes I am defiant and continue to insist I can and will accomplish whatever small task I am taking on. Usually, the cost is too high and I pay it for hours afterwards.

I want this trip to the Land of Post Polio to be an adventureand I like a challenge. But I like to win. It occurs to me that perhaps some new definitions are needed - for words like "win". So here the first flight of PPS has landed at the dictionary. Fortunately, I like dictionaries a great deal.