Living with Inclusion-Body Myositis

The right equipment makes it easier

Bob Parham, the article's author, in his Invacare TDX power chair. Its lift mechanism and high-profile cushion combine to give him an 11-inch boost.
Article Highlights:
  • Author Bob Parham discusses his journey with inclusion-body myositis and the challenges he's faced due to increasing weakness, including his difficulties with rising from a seated position.
  • He also discusses his experiences with various types of assistive equipment, including recliner chairs, power chairs, toilet lifts, and hospital beds with lift-assist options.
by Bob Parham on July 1, 2012 - 3:00pm

QUEST Vol. 19, No. 3

The first hint that I was exhibiting symptoms of a muscular disorder came to me in 1997, when I began having problems rising from a church pew. I realized that I could no longer rise simply by grasping the back of the pew in front of me and pulling myself up. I decided my muscle weakness was simply a result of insufficient activity and advancing age, and that the problem could be overcome by exercising more. I was 70 years old at the time.

I started going to a recreation center near where I lived and working out in the weight room. Surely, I thought, this will build up my muscles. After a year-and-a-half, I was weaker than when I started the program and having more difficulty working out. Finally, in 2001, I brought this problem to the attention of my primary physician, who referred me to a neurologist.

The neurologist put me through tests designed to help diagnose neurological problems such as mine, mentioned such terms as myositis and neuropathy (I had developed peripheral neuropathy at that point) and sent me to “the ‘super neurologists’ down at the University of Texas Southwestern Medical Center at Dallas.”

In 2003, at age 75, my problem was diagnosed as inclusion-body myositis (IBM), a progressive disorder that only strikes older adults. It was good to have a name for the disorder and good to know I would not die from it.

It was not good to learn that there was no treatment for this debilitating, progressive disease. But at least with this knowledge, I could look forward to acquiring equipment to make life easier for me and to lessen, as much as possible, the burden on Betty, my wife and caregiver.

Lift me up

The doctors at UT Southwestern provided me with a prescription for a mechanical lift (sometimes referred to as a Hoyer lift), to pick me up when I fell, as well as a prescription for a power wheelchair or scooter.

For many individuals with a disability — and especially for their caregivers — a mechanical lift is a Godsend.

But in my situation, the lift was the biggest mistake I have made equipment-wise, because when I fall and am on the ground, Betty must kneel down to get a sling under me in order to lift me up. Betty has had two total knee replacements and can't kneel without experiencing terrific pain. Therefore, she is unable to use the lift to help me when I fall.

I decided to get a scooter instead of a power chair because somehow I couldn’t envision myself in a wheelchair at that time. I got the scooter in late 2003 and used it untill 2008. At the time I purchased the scooter, I purchased a Mazda MPV minivan — and learned I was exempt from paying Texas sales tax because I was handicapped and would be purchasing a scooter/power chair lift for the minivan.

The author, exiting his Golden lift recliner chair with ease. Note the 3-inch risers, installed to give him additional lift.

In 2004, I was having so much difficulty rising from a chair that I purchased a custom-made 18-inch-by-18-inch-by-4-inch dense foam cushion that was covered with vinyl coated fabric, with a handle sewn on one end for carrying. I carried this with me almost everywhere I went and the additional 4 inches of height allowed me to rise from a chair or church pew. I even named it “Buddy.”

Getting up from my recliner had gotten extremely difficult and to minimize the problem in early 2007, my son-in-law brought me a lift recliner that his mother had used. Although it was quite worn, I was able to use it for about a year-and-a-half before I decided that I needed to replace it.

To determine the lift chair that would work best, I visited a showroom that displayed a variety. After sitting in a number of chairs, it became apparent that they all had the same inherent deficiency for me. They all moved upward in an arc that did not get me high enough. Also, the back of the chair pushed my shoulder forward. This led to a tendency for my knees to buckle under me, which of course would lead to falls.

The salesperson evidently saw the perplexed look on my face and asked if there was a problem. When I explained that what I really needed was a chair that would lift me straight up, she immediately recommended the Golden chair. The lifting linkage can be moved to another pair of pivot holes for a quick fix. Voila! Just what I needed. A year or two later, I purchased a set of 3-inch risers to give me some additional height.

More power

In 2009, as the IBM continued to progress, I made the first of three major acquisitions, a power wheelchair. The scooter, which had worked fine outdoors, was totally unsuited to the indoor environment. Also, I could no longer rise to get off the scooter. My lift chair became my benchmark.

I began searching the Internet for a power chair that would lift me as high as my lift chair did. This proved more difficult than I had anticipated. Pride had a chair that would lift 5 inches, but this would not lift me nearly as high as my lift recliner. After much searching, I found that Invacare had a TDX model that was available with a lift mechanism that would lift me 7 inches and, by equipping it with a high-profile cushion, 4 more inches would be added. However, this chair was quite expensive, and I feared Medicare would not pay for it.

I visited the physical therapy department at Emory University Hospital in Atlanta and made plans to attend an MDA clinic there. They had a TDX SP chair such as I needed, and I was able to try it out. The physical therapist, who was a wheelchair specialist, took measurements and developed specifications for the chair I needed, after which they wrote a prescription for it. All of this was necessary not only to get the right chair for me, but in order for Medicare to approve it. The chair subsequently was ordered through a local dealer, chosen by me, who had a representative attend this clinic.

Ultimately, Medicare paid for the chair but not for the lift mechanism, which cost approximately $1,800.

I must say that this lift power wheelchair has been one of the greatest, if not the greatest, things to happen to me. I am in my chair constantly now, except when I am either in my lift recliner, in bed or in the bathroom.

After receiving my new power chair, a concern came to light. The back of the chair proved to be too tall to clear the opening in the rear of my minivan. After considerable study, I finally hit on the idea of hinging the back so that it would partially fold down. This proved to be relatively simple, and I ordered two quick-release pins and had them installed in place of two of the bolts that attached the back to the chair base. Removing these pins permits folding the back forward, which in turn enables the chair to be loaded into the minivan. When the chair is off-loaded, the pins are reinserted.

Shortly after this, I acquired another piece of equipment that has been a real blessing to me. For quite some time, Betty had been having to assist in the bathroom so I could get off the commode. From my experience with the lift chair and wheelchair, and from seeing the ads in Quest magazine, I knew just what equipment I needed.

I also knew that Medicare would not pay for it. So, I got on craigslist and searched the various lists across the South. Finally, I was fortunate to find the toilet lift I was looking for on the Corpus Christi (Texas) craigslist. It lifts me up to 12 inches, enabling me to get on my feet, taking this chore off of Betty and allowing me more freedom.

The third piece of equipment, which I acquired in 2010, was a hospital bed. Betty was having to help me get out of bed, and if I had to go to the bathroom during the night, I had to awaken her.

The hospital bed that Medicare was willing to pay for would have been totally inadequate for my needs. Again, I was fortunate to find a completely powered, used, Joern’s bed on craigslist — this time nearby. With this hospital bed, I can go to bed by myself and get up by myself. It is great for both of us.

As Scarlett O’Hara said in Gone with the Wind, “tomorrow is another day.” Certainly there will be new challenges to face. One can only hope that one can conquer each challenge as it arises.

Bob Parham of Palmetto, Ga., turns 85 this July, and with the encouragement of his daughter and grandchildren, is writing a book for them about his life. He offered this article to MDA’s Quest magazine in the hope that sharing his experiences with assistive equipment would give others “ideas that they can emulate.”

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