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.