May 252015

As a degenerative physical disease such as myositis progresses, our coping methods also progress. In the beginning there are inexpensive physical aids such as canes and walkers and often the help of a spouse or family member. Then come more expensive pieces of equipment such as wheelchairs, hospital beds, adaptive toilets, lifting mechanisms and modified vans. Next may come home renovations or moves to homes with more appropriate layouts. Next we may hire caregivers from home health agencies. Finally comes the really big decision of whether to enter a facility. Recently I have noticed more discussion about assisted living or skilled nursing facilities among the myositis community. I can only speculate that as awareness grows and diagnoses increase in number more of us have advanced to the point we can no longer live independently.

It is difficult to write a general article about the need for assisted living or the experience of residing in such a facility because there is no federal standard. It has been left to each state to create its own definitions and requirements. In some states such as California, assisted living facilities may approach the level of skilled nursing in the amount of care they are allowed to provide. In other states assisted living can only provide minimal assistance with activities of daily living. For those states with more restrictions, skilled nursing may be the only option. Of course that means more expense and less freedom.

I wrote a series of blog entries on the subject of assisted living and much of the content is still valid especially for those living in a state such as California. I have provided links to each of those blog entries below. I am continuing to do research on the subject and someday I might turn this into a book. For now I will expand on the series of articles I have already written, with special emphasis on the unmet needs of the physically disabled.

Follow these links to read more:

Is it time for assisted living?

Making the decision to move to assisted living, emotionally, practically and financially.

How we chose the facility we did.

Deciding what to take, what to leave, how to adjust our expectations.

What life in assisted living has been like.

How can we make assisted living better for the physically disabled?

  7 Responses to “How and Where to Live with Physical Disability.”

  1. Thanks, Mike, very thoughtful articles.


  2. Thanks, Mike, not only for this article but for all the rest. I have what they are labeling an “aggressive” form of IBM, I am quickly, contrary to normally slow, progressing from one stage to another; walking comfortably less than 3 years ago, to being mostly scooter-bound now. The truth is this disease is incredibly expensive and my lack of funds keeps me from the tools I need to be adept at making the best situation for myself. Anyway, I enjoyed your nook and am enjoying your blog.

  3. Thank you for your comment Mark. Just for “fun” I did a calculation of what this disease has cost me so far. I didn’t get down to the finest details such as who knows how many different walkers, canes, and other gadgets. But counting up the big costs, the total to date is more than $350,000. Assisted living alone is now nearly $7000 a month with rent increases sure to come. By the way, I’m not including the costs for my wife’s disability which were considerable.

  4. nice article i have been recently diagnosed with IBM and like Mark’s comment above my condition has been rapid in its progression, i’m sure Doctors thought i was a fake someone cant show up like i did with numerous symptoms suddenly. well i did 2 years on EMG Tests and tests and tests and tests then a biopsy. now today im losing weight 21kg recently more tests. the long journey with IBM. Never heard of it until a few months ago. Regards Chris

  5. Hi Mike,
    I am so inspired by your proactive outlook. I have enjoyed reading your blog over the past year or more and purchased your e-book when it came out. My father has IBM. He is a computer enthusiast and I would like to know more about the way that you stay connected with the world. He has difficulty using his fingers and can’t physically write anymore. I am thinking about getting him a writing bird, seen here and perhaps a few other devices to try that will help him tap out messages on the keyboard. What assistive devices do you use with regards to your computer use/blog and are there people who help you (beyond getting you up for the day and setting you in front of your computer). Thanks, Ruthie

    • Ruthie,

      Thank you for reading my blog and purchasing my book.

      Like your father, my fingers have weakened to the point where normal handwriting is impossible. Other than signing my name occasionally, I never attempt handwriting but instead do everything on the computer. The “writing bird” device looks like it would be helpful for people whose fingers are less seriously affected, but only for cursive handwriting. I don’t see how it could be used on a computer keyboard.

      I have been using voice recognition for all of my writing for several years. That includes every article in my blog as well as my book. The program I use most is Dragon. On the Mac it is Dragon Dictate, I’m not sure what the current program is for Windows, it used to be Dragon NaturallySpeaking. It takes a little bit of practice, but eventually you can dictate just as fast as the best typist. Although both Windows and Mac have their own built-in voice recognition, neither compares to Dragon for accuracy and ease of use.


  6. United States defined under ADA 1990 (American with Disability Act) under title II that Public transportation authorities may not discriminate against people with disabilities in the provision of their services. They must comply with requirements for accessibility in newly purchased vehicles, make good faith efforts to purchase or lease accessible used buses, remanufacture buses in an accessible manner, and, unless it would result in an undue burden, provide Paratransit where they operate fixed-route bus or rail systems. Paratransit is a service where individuals who are unable to use the regular transit system independently (because of a physical or mental impairment) are picked up and dropped off at their destinations. Thus, US States also promotes the non-Emergency Medical Transportation services for assisting them during such situation.

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