My Year With MS

We live an extraordinary life and 2010 was certainly no exception. We went to Australia for two weeks and it was incredible. One of the most beautiful and friendliest places we have ever been. Then we went on a big family cruise to the Mexican Riviera. Swimming with dolphins is amazing and something everyone should do….and that’s just the beginning.

Living with MS and traveling, which I love to do, does take its toll on me. The trip ‘down under’ included two fifteen hour plane rides. While there I spent all day every day in the wheelchair. My bad. When I got home I had less ability and confidence when using the walker. Then a few weeks later we went on our cruise to Mexico. Again no walking, all wheelchair. Guess what happened next? I got a blood clot which landed me in the hospital for three days on anticoagulants. OY! Long plane rides put everyone at risk for blood clots, especially people like me with limited mobility to begin with.

Then in September I started experiencing weakness which came on very quickly. In fact, because of the rapid on-set, we were certain that it must have been an infection and rushed to see a doctor. (Have you ever tried to see a doctor at Cedars-Sinai on a Jewish holiday? Good luck!) Exam, blood, urine, the works and there it was; an infection. Thank G-d. Now we knew what was causing all of this and could treat it. Right? Not quite.

The most common form of MS is Relapsing-Remitting MS and is characterized by exacerbations, or flare ups. Periods of greater weakness and often other symptoms that last for shorter periods, usually weeks. They are followed by a recovery, often full and all too often leaving the MS’er with less ability or more symptoms than they had before the flare up. I don’t have that.

I have what is known as Secondary Progressive MS. This form of MS is characterized by a slow, steady progression of the disease without flare-ups. Or as my doctor put it “You don’t get exacerbations….unless you do.” That was me. Years without an exacerbation until 2010 and then BAM! I got one.

We will never know which came first, the infection or the exacerbation. My ability to move, stand and walk was already pretty limited. Once the exacerbation hit, the standing and walking were gone. I also could not transfer from one chair to another on my own and needed a caregiver to help me to the wheelchair, toilet, shower, back to the chair. You get the picture.

This went on for a few of months with no improvement. Then in January of this year my right calf started to swell and harden. Another blood clot? I called the doctor and he said to go the emergency room. I did. No blood clot. Hurray. They did, however, admit me and gave me three days of IVIG, an infusion treatment for acute exacerbations. While there I was evaluated by the physical rehab’ team and accepted into the program, extending my stay by another two weeks and receiving 3.5 to four hours of therapy everyday……and do you know what happened? I got stronger.

Evidently five months of not moving can really contribute to muscle loss. Though I did make a lot of progress, I am still not walking with a walker and barely (and rarely) able to stand. But it’s a start and I’ll take that.

There is also more to MS than just disease activity…...at least there is for me.

I run a monthly support group in our area for the National MS Society that continues to grow in size and value. Also, Gail and I have served three times as co-facilitators at a weekend relationships program for people with MS that the Society puts on and we have loved doing this. We hope to do it again and again. Our 2010 Walk MS Team, "The JiggyWiggits", was again one of the top fundraisers in the country bringing our four year total dollars raised to just over $130,000. (Our next Walk is April 3rd and everyone is welcome to join us. Just click JiggyWiggits.) Finally, although my blogging has slowed down a bit, it still gets a fair amount of traffic and is a very rewarding experience for me.

It must read as though our lives revolve around MS. They really don’t. There is so much more going on than I can fully address in this letter. Gail runs (and I help) her dad’s foundation (www.zachorfoundation.org ), we are starting a new business, we take time with family and friends and we manage to have things to do most every hour of every day. Add to that the fact that my beautiful wife has had some of her own health issues to deal with and we stay very busy.

And then there is MS which is like having a gorilla in the room. It can’t be ignored and when MS wants our attention, it lets us know.

My year with MS was certainly a year of challenges and changes. It was also a year of learning more about MS and about me. This year, 2011, is off to a good start. I feel fortunate, blessed and privileged and much of that is because of the people around me. My wife, my children, my family and friends all show up and all contribute to this amazing journey we call life. They make it possible to do all we do and to make a difference and that makes me very happy.

When I went to the hospital I wrote “I am happy to be here.” Now that I am out and home, I have much more to do.  Will I continue to exercise?  Will I continue to exercise my influence over this disease? Will I continue to participate and make decisions that result in my happiness regardless of circumstances?  That’s up to me. That’s my choice. That’s what I am choosing to do.

Support me in this year's MS Walk. Join our team and contribute to the JiggyWiggits by clicking here. You, and everyone affected by MS, will be glad you did.   

Participate. Make a difference. Live a life that matters.