***With this post I want to try to do two things:
(1) Pick up the story where I left off of my struggle with melanoma and paraneoplastic syndrome in early 2011, and
(2) Provide some tips about how to deal with an intensive rehabilitation plan when your body and mind just doesn’t want to cooperate.
In one way I was very fortunate. I was being treated at a world renowned rehabilitation hospital by therapists who were skilled in working with patients with a variety of chronic injuries resulting from a multitude of causes from stroke to traumatic brain injury. I had been discharged as an inpatient just before Thanksgiving 2010. I immediately started an outpatient rehab program with the immediate goal of just being able to make a Christmas trip to Northern Ireland.
***I had been told that I had a paraneoplastic syndrome. At this point in time, I really didn’t understand exactly what all that meant. I knew that I had cancer and I also knew that the scans in the hospital seemed to show different things with a CT scan showing a possible lung nodule and the PET scan seemingly clear.***
I had been given high dose steroids with no beneficial effect. All they did was make me gain weight and become emotionally unstable. I had also started treatment with IVIG and was given an intravenous dose almost as soon as I returned from Ireland in early January 2011.
***My rehabilitation plan started out with one hour of PT and one hour of OT three times per week. I was still mostly using a wheelchair but had begun to receive training using a rolling walker.***
I think as with most physical therapy patients, I was given early on a series of stretching exercises to do at home in between PT treatments. Also, most of my PT sessions started with the physical therapist helping me to stretch.
I was and still am very, very stiff.
***I do stretching exercises almost every day and I don’t think I am any more limber today (March 2014) than I was then (January 2011).***
I was lectured at every session on how important stretching was to recovery and being able to do other exercises that I would need to do to help me. What neither I nor the therapist knew was that it was unlikely that any exercise was going to result in any significant long lasting improvement. I was in a race to simply stabilize what was a deteriorating condition.
Now I say this not to mean anything bad toward my therapist. She was very competent and very caring and very much wanted me to succeed.
***However, therapists are more used to treating patients who not only show initial improvement but who also show continuing improvement over time. This is even how Medicare tries to force the issue. Until losing a court case, Medicare would not cover therapy that did not have as its goal continuing and significant improvement.***
This awful standard has cost many disabled and elderly patients the chance to maintain improvement that they have attained through hard work or whose condition only gets worse because they are denied the kind of formal treatment program that would keep them stable.
Another part of the program was working to walk again. First, without the wheelchair, then with a rolling walker, then a rollator and finally with or without a cane.
***Again, the expectations, which I shared, were not realistic. I made great progress through a lot of effort and finally got reasonably successful using the rollator.***
I hated it at first because it made me look like an old man (in my head anyway). And, any time I was up I had balance and shaking issues. The worst part was the shaking or tremor of my left leg whenever I stood. I also had the same shaking with my left arm whenever I tried to do things that caused me to hold on with my left side or lean than direction in order to keep my balance.
***No matter how hard I tried, I seemed to plateau after about six weeks and simply could not make any more progress. I was weak, especially on my left side, and I had no balance. I would fall often and sometimes it would hurt – bruised and bloody knees, a scrape on the head, bloody elbows, etc. I continued therapy for several more months but still did not show significant improvement.***
During one of my therapy sessions, I choked on some water. I did it again and was sent for a swallowing evaluation. The tests showed that I had a swallowing problem – something call esophageal dysphagia. Since the tests showed that it involved both solid and liquid food, it was likely a neuromuscular disorder and likely associated with the paraneoplastic neurological syndrome to which I had been diagnosed.
Speech therapy did help me learn better techniques. I continue to have problems and should always be supervised when I eat, but I have learned to deal with it and do relatively well today. I end up with food on me (the tremors I have do not help) but so far, only the occasional cough and chronic gas (which I am told is also a symptom). And, I have only had mild pneumonia a couple of times since then (four times total since I first got sick).
In May and July 2011, I would make trips to Rochester, Minnesota to seek out the opinion of the doctors at the Mayo Clinic. I will write about those trips in a future post.
***So, if you’re like me and have been prescribed PT and OT for your chronic pain and/or illness, how do you get through it without feeling like this:
- Be certain your doctor understands your illness.
A rehabilitation plan should be under the “supervision” of a physician. In the beginning I was under the care of both a physical medicine specialist (physiatrist) and an neurologist. Later on, a rheumatologist joined my treatment team. All understood my diagnosis and at least most of my limitations. As a result, my treatment plan was always being modified to try to obtain the most improvement without causing regression.
2. Rest after your exercise.
Don’t go straight home and try to do what you couldn’t do during your treatment sessions. If you do, then you end up in bed until it’s time for your next treatment. For a time, I felt like I had gotten into this pattern. My doctors helped me to realize that I had to go at a pace that I was comfortable with both at therapy and in between treatment sessions.
3. Be honest during your evaluation by the rehabilitation professionals (physical, occupational, and speech therapists) before you start any treatment.
Tell them what you can and can not do. Tell them what hurts and exactly where the pain is. Otherwise, their treatment planning will not be what it should be.
4. Be honest during treatment.
If you feel sick or if it hurts too much, say so. Stop when your body tells you to. But, on the other hand, if you truly feel up to it, try to do more than the minimum that is expected. You don’t know how far you can go until you try. And after you give it an honest effort, it’s okay if you have limits and can’t do more. Never feel embarrassed or ashamed of what your body will not let you do!
5. Do your exercises at home but don’t overdo it.
I do exercises everyday that I brought home from my last series of PT treatment. They are mostly stretching and some stationary cycling. To be able to do the exercises correctly, my rheumatologist advised me to limit my other activity. I have trouble walking because of both balance issues and muscle atrophy and weakness. I have “tendonitis” all over my body. Just getting up and down requires effort and the little walking I do is difficult. So, he recommend my using a wheelchair almost all of the time. But, he also recommends that I do my simple exercise program every day.
If you haven’t already had a chance to read my post about some simple exercises that you can do in spite of chronic pain, here’s the link: