Thursday, April 16, 2009

Thoughts On Adaptive Seating

I see my Adaptive Seating Specialist tomorrow to finalise the new set of wheels. It has taken almost two months to get to this point, largely because of medical ups and downs on my part. I kept hoping against all odds that the medications, physical therapy and new bracing would somehow work in concert to ease the increasing pain and allay the damage to my medial knee. No such luck.

Surgery is not a good option either because the replacement joints are not made to withstand the stresses put on them by the altered gait and biomechanical issues of a mostly ambulatory adult with Cerebral Palsy. Indeed, surgery of this kind for me is a crapshoot. Once I do it, I'm doomed to repeat it as there is no guarantee of survivorship of any artificial joint. An examination of current medical literature confirms this, along with the fact that most of those with CP who undergo joint replacement are full time wheelchair users.

The arthritis and damage to my ACL developed over time due to the CP, according to doctors and physical therapists. Never mind that I have tried several times over the last few years to launch meaningful discussions regarding joint conservation and assistive devices. My docs pooh-poohed the idea with statements of my possible early demise, development of obesity, diabetes, heart disease and a litany of other ailments. Meanwhile, the wear on my joints continued and I now have the knee of a seventy-year-old, arthritis in other extremities and chronic pain that varies by degree and is only held in check by prescription anti-inflammatories that my doctor informs me kill more people in the U.S. annually than does HIV due to the onset of internal bleeding. I am not yet fifty.

Only after the knee went wonky did adaptive seating gain favour with my doctor, who it seemed, suddenly realised following my allergic reaction to medication, and several falls because my leg was so swollen I could not stand, that I did really need some help.

The Adaptive Seating Specialist debunks the idea that wheelies die prematurely from a host of conditions, stating instead that mobility from a chair gives users the ability to stay active, albeit differently. I know some who are active in sport, others who dance and one who lives to race. I just want to be able to enjoy the park, get some fresh air, spend time with friends, care for my pets, attend public events, enjoy my synagogue, and find a job in my field without wearing myself out.

Those of you who have done and continue to do these things, please feel free to offer suggestions or comments. I am currently researching pain control as well. The chair is lightweight titanium with power-assist wheels. I'll know more after trying it out tomorrow.


  1. After 30+ years of paralysis my shoulders started to ache and I was in some pain. I saw an MD who simply said all paraplegics develop shoulder pain. Frustrated by this unhelpful observation I went to the medical school library and read a bunch of rehab journals. I learned most not all paraplegics develop pain their shoulders. Based on what I read the best way to alleviate the pain was to strengthen the entire should joint. I did this via kayaking and am pain free. Perhaps you could look into what rehab journals have to say about your joint problems.

  2. Thank you WCD for continually cheering me on! I really appreciate it!

    William, your suggestions and observations are appreciated and I am indeed beginning to read the journals and will confer with my PT this week.

    Awesome of you both to comment!

  3. What kind of power assist wheels are you looking at? They don't seem to be prescribed very often in the States. You might want to check out some of the threads on the E-Motion and other power assist wheels at the CareCure Forums.

  4. I'm a community powerchair user due to fatigue, pain and fainting issues. When docs gave me that "you need the exercise" line I would respond, "Did you walk to work today?"

    I get plenty of exercise from swimming three times a week. Ahhh! The water! Where I never need be afraid to fall, where I can float without any contact pain. Heed the force and become a chlorine junkie!