Thursday, March 20, 2014

Coming from a Dark Place; Wish I Had Seat Elevation

As my printer is permanently broken, getting my papers together for this year's home care re-certification had additional challenges.  One thing I really miss with my present wheelchair is the feature of seat elevation.  It would cost m about $1100 cash out of pocket to add on this feature that I found so useful on my old wheelchair.  At the time I got the first motorized wheelchair, the MDA gave a $2000 grant to each client for wheelchair modifications.  Due to budget cuts, they no longer give this.  So one thing led to another:  even if my printer were working, it would have been too ominous a task to copy anywhere from 70-80 pages of documents.  And, without seat elevation, it's impossible to make copies at a public copy machine.  So I called Staples near my home and explained that I am in a wheelchair and needed to make one copy each of about 75 pages and the woman at Staples said "great.  Just drop it off and we can do it for you".  Such is the provision of the ADA: when self-service is not accessible, the PWD gets full service at self-service rates.  Well, that holds true if I show up myself.  But when an able-bodied aide shows up, she is directed to the self-service copier.  That task is not in the job description of an aide, so I was so grateful that Ellita stood at the copy machine and made the copies for me.  Otherwise, we would have had to make another trip with me [bundled up for the freezing cold] and tell the counter person I need assistance.  I am saving for a new printer and this time it will be wireless, so that I can also print from my iPad.  And, I still miss seat elevation on my wheelchair.

Beginning early April, I will be starting a course in Plant-based Nutrition through e-Cornell.  There will be 3 separate courses of two weeks each and at the end I will get a certificate.  I don't know what exactly I will do with the knowledge in addition to using it to better myself, but I look forward to somehow using it to help others, either by counseling, blogging or writing articles.

A couple of weeks ago, I went for my quarterly visit to the ALS clinic.  For some reason, each team member was trying to get me to sign on for home physical therapy again.  As I told about the experience in this blog, I had a therapist visiting from VNS [Visiting Nurse Service] and she worked me so aggressively that a couple of months after starting, my left knee began to hurt badly.  This was a year ago -- in March of 2013.  I had to stop PT and see an orthopedic doctor who visited the office of my primary doctor once a month.  To my dismay, I only saw a PA [physician's assistant] who gave me a prescription for physical therapy.  This time, I attended outpatient PT a couple of blocks away from the house.  I attended PT all through that summer and at times the pain was insurmountable.  When I had run out of Tramadol [pain reliever] and there were no refills for the medication, I called my primary doctor who never returned my calls.  So I made an appointment with the orthopedist at his own office and saw two young men who identified themselves as Medical Assistants.  They refused to let me see the orthopedic doctor and also refused to let me have any prescription painkillers.  I took over-the-counter painkillers until I realized I could live with the pain, but now had another sensation : a "pins-and-needles" feeling on the ride side of the left knee. see archive

So my neurologist prescribed Lyrica for me in the fall and said I seemed to have a neuropathy. He referred me to a rheumatologist. In the meantime, Lyrica made me even more sleepy than I usually am.  Moreover, as I wrote about in this blog, [see archive] I took an antihistamine one morning for my year-round allergies and I went into such a deep sleep that I was cognitively affected for a good part of a weekend.  I was panicky because I thought I was going into dementia.  When I woke up and realized I could think semi-straight again, I went on the internet and found out that antihistamines and Zyrtec don't mix.  Finally, I went to the rheumatologist and he determined that I didn't have neuropathy and told me to get off the Zyrtec, which I gradually did.

Anyway, the thought of going back to PT was not sitting well with me and this put me at odds with the members of my ALS team.  And to make matters worse and even more confusing is the question of whether home health aides are willing and even permitted to exercise me.  One of my aides works for many years for Partners in Care, which is the home-care arm of the Visiting Nurse Service [VNS], the company through which I get home PT.  In her in-service training, my aide has been told that she SHOULD NOT exercise me because of liability issues.  Then the VNS PT's come to my home and tell me that, in between sessions, and after they leave, my aides need to do ROM [range-of-motion] exercises with me.  Since Medicare limits their time with me, eventually they leave and expect that the aides will continue the work, which they don't.  When I was at clinic, the team members insisted that my aides have to exercise me.  So do I "yes" them to death and accept the PT, knowing that it will not work out the way they would like it to?  Or do I keep talking honestly and have the team think I am being uncooperative and difficult?  And the other question is:  do I have to go through a parade of people coming through my apartment to "intake" my case and then trying to push other services on me like occupational therapy [OT] with the goal of "making me more independent"  [LOL], and speech therapy [an even bigger LOL]?  Really! that is what they did the last time, and I had a procession of VNS people coming every day into my apartment full of machines and other clutter, including cardboard boxes.  

I have been in a very dark place this winter.  I cannot seem to conquer the clutter without people to help me move stuff.  Any able-bodied friends I had,  have moved on to other things; some are able and willing to do some kinds of things but not others[understandably].  And additionally, the closing of my basement access for a full month as well as the problem with my portable shower unit gave me a feeling of dependence and lack of control that was worse than ever.  For a while, I could neither take a shower nor get out of the building to get my hair washed at the salon.  I had a can of dry shampoo in the apartment for when my head got too stinky, but that is never the same as a shampoo.  There is a way to get down steps with a manual wheelchair, as my brother-in-law does every Thanksgiving to get me to the family dinner [their house is 6 steps up], but I have nobody strong enough to do that in my building, and then to wheel me around in the snow anyway.  While I often relish quiet time to meditate, get creative and read, and not have to worry about interacting with a mechanical voice and people who are uncomfortable with my disease,  I still get painfully lonesome.  And yet, my apartment is so visitor-unfriendly that I am ashamed to have people see it anyway. Spring is coming and I feel the dark place get a little less dark.