E. John Graichen

MS Page 

I experienced my first symptom (Lehrmitte’s sign) of multiple sclerosis (MS) in June of 1977, when I was 36 years old. Within two months I began using a cane to keep my balance while walking. I was diagnosed wth MS in September of that same year. A few weeks after the diagnosis was made, I began physical therapy sessions, which I have continued ever since.

I have the primary-progressive form of the disease, so my ability to perform certain activities has decreased over the many years of my disability. I was able to continue most of my professional and social activities for the first seven years. However, in 1984 I experienced a significant exacerbation, so I had to resort to crutches, then a wheelchair, to get around. In 1986, I took a disability retirement from my full-time job.

Over the years I have tried a number of treatments including ACTH injections, intravenous infusion of methyl-prednisone, six months of Betaseron and six months of Methotrexate. None of these procedures has been of benefit to me.

In February of 1978 I had a dorsal column stimulator implanted in an effort to reduce some of the symptoms of my MS.. The electronic stimulator may have been of some benefit, as I frequently felt that I had more energy, but in April of 1982, when I was informed that the stimulator’s battery was no longer working, I did not experience any significant exacerbations. I had the stimulator removed in December 1982. In 1989, the Fall issue of Accent on Living Magazine published a how-to article I wrote on how I modified my sports car to make it more accessible to me. Subsequent to that, I drove a full size van with a lift, and a minivan with a fold-out ramp. I used hand controls on all my vehicles from 1978 until I quit driving in May 1996.

In March of 1996 I obtained a Canine Companion service dog, who has been a wonderful companion and faithful assistant to me. Say “hello" to Abbott.

I have experienced severe spasms in my legs for many years. In July 1996, I had a Baclofen pump implanted in my abdomen area which delivers liquid Baclofen directly to my spine. The pump can be regulated by the doctor via a computer, thus ensuring that I receive the proper dose at the right time and correct rate. The battery that powers the pump lasts about five years. The pump can store enough medication to last three months before it has to be refilled. The Baclofen pump effectively controls the severe sasticity in my legs. In February 2002 I had the pump replaced, as the battery gave out.

Currently my condition is such that I am a complete quadriplegic, virtually paralyzed below the neck. But with the help of my loving wife Aleida and my caregiver, I get dressed every day. I use my power wheelchair (Jazzy) and Abbott, my Canine Companion, to lead a fairly normal lifestyle.We go to church, movies, shopping and out to eat on a regular basis. I also spend time at my computer, where I keep track of my thousands of genealogy records and surf the net. I have a Quadjoy which is a special device that allows me to perform all mouse functions with my mouth and tongue; and a virtual keyboard made by Wivik that appears on my screen and permits me to "type" on the on-screen keyboard with my Quadjoy.

I would welcome comments, questions or suggestions from anyone regarding MS.

Send e-mail to ejg@ejohn.net

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