Sunday, December 12, 2004

Kelly and I at the place of refuge

How 'bout that all terrain wheelchair?

Tuesday, October 05, 2004

By Betty; What Do I Do Now

I was sitting in my recliner chair holding my daughter, who was 6 months old at the time. It was a nice day in Sarasota, Florida, as I had the windows open and you could hear the birds singing and children playing outside.

I started to notice something strange with my body that day. I had felt numbness with both of my legs but it had continued up to the middle of my back. I also noticed numbness on the side of face and across my forehead. This was very weird!

I had a house warming party to host that night so I couldn’t think too much more about it. I did notice that when I walked on the cold floor, barefoot, that my feet would hurt…A LOT! This was definitely not normal! I told Sam I had to see the doctor to check this out.

We had our party that night and we did talk to our friends about what was going on but we made light of it. After all, how can you explain mystery symptoms when there is no reason for them?

I went to my general doctor and went through the whole story again with him, where I was and what I did. He didn’t have a clue as to what was going on. The one good thing he did do was referring me to another doctor.

I was not really worrying at this point that I had something that couldn’t be fixed! Off I went to the new doctor. He did his thing and ran all kinds of tests in his office. I do remember one test he did that I thought was very strange. I was sitting on his table and he was moving my big toe up and down. I had my eyes closed and he kept asking me to tell him when he had moved my toe up or down. Well, I never felt him move my toe up or down. I had failed his test…he had been moving my toe!

Sam had told me later, he really didn’t move it much and that was why I couldn’t feel it but I was to learn the real reason very soon. The doctor wanted me to check into the hospital to have further testing done. I had 3 children by then so we had to make arrangements for them as Sam had a job too. Things were squared away and I went into the hospital.

I had the usually battery of tests for the time, a spinal tap, blood tests, a cat scan. After all was done I got my final report. The doctor came into my room and told me I had MS. I just looked at him and said OK. Nothing else was said. The doctor left and I reached over and picked up the phone and called Sam. I told him on the phone what the doctor had told me -- I had MS. Sam was silent. I also told him I could go home the next day.

It didn’t sink in for me until a week later, after I was home. What do I do now?

Tuesday, September 21, 2004

By Frank; In the beginning; a new lifestyle

It all started 20 yrs ago. First my 20/20 vision deteriorated suddenly. My depth perception was diminished and I developed color blindness. There was no explanation. The CAT scan found no brain tumor and there was no noticable reason the doctors could pinpoint. Several months later my wife recalled a bout of Shingles I had had earlier. The doctor deduced that that was the cause. Since then other doctors have speculated that the Shingles were the trip-wire that spawned the MS. Who knows?

I went on with life, the color blindnes and depth perception problems went away. The vision almost returned to normal. But, as time passed other seemingly minor issues began to emerge. First after 10 years or so I began to notice that when I wrote certain numbers and letters the pencil would jump slightly out of control. The problem effected 3s and 7s first. I remember being frustrated by the spasm, for lack of a better word, that always seemed to occur when I wrote those numbers.

At the time Corinne, my wife, and I played golf twice a week. I began to notice that walking the course was a struggle. I seemed to have to sit and rest between holes often. I mentioned it to the doctor during one of my annual physicals. He suggested that I was dehydrated and needed to drink more fluids while on the golfcourse. Jokingly we disussed whether increasing the beer intake during the round would help.

Others began to notice a limp in my gate. I didn't notice it or feel it. If I didn't notice or feel it, how could it be something of concern?

At another annual physical the doctor suggested I visit a Neurologist for further investigation. Why not? I felt fine, there was nothing wrong with me. Let him check me over, give me the green light and off I'd go.

The Neurologist took a history, did a physical exam and asked me to walk down the hall. OK, no big deal. Dr. Shokrae then made the following observations. First, I walked with a rather wide stance. Second, he noticed the limp. Then he said he wanted to run some tests to rule out certain diseases. Ok, no big deal.

All I had to endure was an MRI, a lumbar puncture and a visual acuity test. Apart from the headaches associated with the lumbar punture it was a painless experience.

Then came the meeting with Dr. Shokrae to review the outcome of the tests. As we sat in his 7th floor office he began to point out the lesions on and in the brain. Afterword my wife revealed that she was concerned about what the prognosis was. I was in shock. I was confused. And I was at least a bit scared. At that point what I knew about MS was limited. I was sure it wasn't good but I didn't know what to expect.

Since that day lots of things have changed. I'm retired now. I get up every morning and make my wife's breakfast. Do the laundry. Run whatever errands need to be run through the week. Granted it is not as fullfilling as managing a field service organization, but it is a purpose! And I'm thankful to have the soulmate that I have.

I accept the lifestyle changes that come with MS. I accept the fact that tomorrow may be different, that I might not be able to perform as well physically as I did yesterday. That I might need a little help along the way.

I now know that MS is what we all, regardless of our position in life, fear the most- CHANGE!