A bad start to the year – Part 3.

From my last post, after having a good Monday following my steroid infusions, I thought everything was going to be fine. Waking up Tuesday morning and seeing that I now had the mumps, I knew that my feeling good was over after one day. I now knew that I would now have more than another week of feeling poorly.

For the next week I was extremely tired. I was sleeping 9-10 hours a night and taking 1 hour plus naps in the morning and afternoon. It seemed as if time was moving at half speed. During the first few days of the mumps, I took a steady diet of Tylenol to keep the swelling of my glands down and get rid of muscle aches.  After about 6-7 days I finally began to feel human again. It’s now been over 2 weeks since I started coming down with the flu and have my exacerbation of my MS.

Finally I’m feeling pretty good, though I still have a little cough from the flu left. My walking is better than it has been in 6 months, though it is still not very good. I can only cover short distances before the legs give out which is why I have a scooter. I’m now able to walk around the house without having to hold on to things to steady myself. I’m hopeful that things will not deteriorate to fast in the future.

Having the exacerbation with my MS was probably one of the scariest events in my life. All I could see was that I was going to lose even more of my life. The prospect of loosing my mobility was something I don’t think I had ever really considered before, even though I knew it was a possibility. Here I was going to lose both my ability to drive and the ability to walk on my own. It is now something that I’m definitely taking as a future possibility.

So I’m now back to being able to resume my life and get back to the things that I want to do. I’m hoping to get back to working on my photography project. I think I’ve got a few more giants to photograph. Now that I’ve used all my bad luck for the year, the rest is going to be great.

A bad start to the year – Part 2.

In my last post. I left you where I had contacted my neurologist to get an appointment to see him. While he was not in the office, his nurse arranged for me to see one of his colleagues at 2 pm that afternoon. I now had some time to reflect on what had happened in the last 24 hours. The night before when my legs quit functioning was one of the scariest moments of my life. As I pulled myself across the floor with my arms, all I could see was a bleak future.

In the thirty years since I saw the first symptoms of MS. I had never really had an attack. As my MS worsened at the start of the 90’s, it had just been a steady decline in my legs. The first things I noticed was that my legs would get out of sync with each other after sprinting about 80 yards. During the next year or so, that distance shrank, 60, then 40, then 10 yards. Then I couldn’t sprint but I could jog and then not run at all. By the turn of the century I couldn’t run at all and even had difficulty walking at times. Never did I have an attack where something just quit working.

That night all I could see was that I would be losing the life I’ve had. I wouldn’t be able to drive anymore. In California, not being able to drive is almost like a death sentence. How do you get anywhere? I didn’t want to be dependent on my wife, while she is loving and would do what ever I need, I don’t want to have to burden her with having to be a my beck and call. Would I need a wheel chair to get around? I use a scooter when I have a distance to cover, but I can get off the scooter and walk when I needed. I was panicked with these thoughts and not sure where my future would be headed.

My wife and I headed to the neurologist that afternoon not sure what would be our options. The neurologist was excellent. He spent 45-60 minutes listening to me, examining me and finally explaining the options I have. He agreed that the temperature from my bout with the flu is probably what led to the attack. He thought the best plan of attack was to get an infusion of steroids to reduce the swelling at the location of the attack on the brain. He felt that I might be able to return to where I was before the attack. While that wasn’t guaranteed, the chance was better than where I was now.

The nursing staff set up and appoint for that evening, Wed., Jan 15, with the infusion center. I would receive an infusion for 5 days of Solu-medrol. I went the first appointment that evening. I used the scooter to get from the car to the infusion center. Once I was at the station that was assigned to me, I parked the scooter about 4 feet from the chair I would sit in. With great difficulty, I shuffled from the scooter to the chair, unable to pick up my feet.

The nurse started the 1000 mg Solu-Medrol infusion. This would be the first of 5. About 2/3of the way through the infusion I could actually pick my legs up off the footrest of the chair. I could bring my legs back towards my chest. Wow, this was a magical potion. When I finished the infusion I could walk over to where my scooter had been moved. While it wasn’t normal walking it was probably better than I had walked in 6 months.

The next for nights had had the rest of the infusions. The last night I even walked into and out of the infusion center. While it wasn’t a fast walk, I was walking more than I had in 6 months. Now would this improvement stay, or would if fade as the steroid wore off? On the way home that Sunday night my wife and I stopped for a piece of pie and discussed the last few days. Would the improvements stay or would I go back to where I was a couple of days earlier? I still had the flu and was dealing with that.

I had a great Monday, was able to walk around the house with little problem. I fixed dinner that evening and went to bed thinking that maybe everything was going to be ok. I slept fairly well the first part of the night but during the early morning it seemed to be uncomfortable to lay my head on the pillow. When I got up in the morning I immediately knew why, looking onto the mirror in the bathroom, I could see I had the mumps. My glands where swollen, I sort of looked like Gov. Chris Christy of New Jersey. I never had the mumps as a child and now it seems they found me.

This is all I need, I still had the flu, ad an exacerbation of my MS, and now I had the mumps.

I will continue the story in the next post.