A Question – 1/18

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I’m on a site for people with Multiple Sclerosis.  You can ask any questions about the disease that you have. The other day a man named Jim asked me how my MS was doing and what were some of my symptoms right before I started losing my walking. I’m an open book and I don’t mind answering questions about my crappy disease (MS).

I was diagnosed in 1991. Everything below my waist stopped working correctly in November of 2011. I had 20 years in between diagnosis and what I would call really disabled. I hate to say really disabled because I know there are many people with MS a lot worse than me.

In hindsight, I wish in 1991 someone could have told me I had 20 years left to walk, stand, dance and bicycle etc. but that’s impossible to know. MS is so unpredictable. Many people don’t get diagnosed for many years after their first symptoms appear.

To answer Jim’s question from the first paragraph. This is how I was feeling right before I stopped standing and walking. When October of 2011 began I was walking “rugged.” Walking “rugged” for me meant that my lower back was aching, I was shuffling my feet when walking and I was leaning on more furniture for balance than usual.

The reason for the aching lower back was because my legs were not strong enough to hold me up. Little did I know I was compensating for my weak legs by using my lower back. I remember this clearly because I picked up my future wife Doris on October 9, 2011 at 3:30am. That was not the best time for me because of my fatigue problem.

On the 9th I’d had a normal day doing normal activities. That night I went to bed at 10pm and slept until 3am. I then drove to the Amtrak station. I remember taking my walker along and I decided to use it when I entered the Amtrak station.

Doris’ train was 30 minutes late. When she finally arrived she had a travel suitcase that rolls on wheels. She rolled her suitcase to my van as I was using the walker. When it was time to load her suitcase I told Doris she’d have to load it as I was getting tired and feeling weak. Those symptoms usually were early signs of an exacerbation which I hoped would not come true.

If I’m honest about my MS I don’t think I’m doing very well. However, if you ask my neurologist who sees many MS patients daily she would say I’m not doing too badly! The difference is that I can remember what I used to be able to do. I know that sounds like I’m feeling sorry for myself and I probably am. Everyone with MS knows what they used to be able to do and how it’s changed.

On the good side I just bought a used NuStep T5xr recumbent bicycle. I had a friend pick it up because he has a truck and he wanted to earn some money. I started riding a T5xr at the health club when we had a membership.

The T5 has at least 20 different riding programs to choose from. It also has 15 different levels of speed, a mile counter, a calorie counter and timer so you know how long you have ridden. You can ride it around an oval track or up and down hills. Another advantage for me is I can transfer easily from my scooter to the bicycle’s seat.

Scooterjon