Multiple sclerosis Diagnosis : I’ll Run Again in Heaven – Part 2
Multiple sclerosis Diagnosis : I feel I can talk about my multiple sclerosis with confidence because my body has experienced just about everything MS can dish out. I’ve only been in my current condition for the past three years and I feel it’s still not that bad! I’m still looking forward to the future! That is not a bunch of bull, either! My life is good! I get up in the morning and I go to my computer to check my emails. I then work for a couple of hours. After that I can rest, watch TV or whatever. I don’t have a boss overlooking my shoulder.
Now I can only walk 50 feet before my legs weaken and I’m looking for a chair to sit down on. I always tell people “walking is overrated” anyway. LOL As long as I have my three wheeled scooter Max, I’m OK! Max will be my legs for the next 30 years and I know it sounds weird but that’s OK with me. I use Max 100% of the time outdoors now. I also use a walker (Sally) in my apartment. Usually, by 5pm my legs are weak and Sally supports me. In the past 6 months I find myself reaching for Max or Sally to help me get around! I’m amazed at what the human body can do or not do to itself! It’s kinda weird to experience losing your legs first hand. I didn’t get shot in a war, I didn’t have a bad diving accident and I didn’t have a bad car accident. MS just happens to people!
Everyday people are getting more accepting of disabled people. I feel disabled people are the new minority of the world. Everywhere I go is handicapped accessible. If I need to go to a Wal-Mart, a Home Depot or a large grocery store they have doors that open automatically making access easy. In my little town where I live there are no automatic doors but I can still get in the buildings I want to. I can easily get into my grocery store, the drug store, the post office and my favorite pizza place. I’ve been opening doors for 8 years now while riding my scooter and I’m proud to say that there is no building as of yet I haven’t been able to get into.
When I was diagnosed with MS my neurologist always told me that how I was after 5 years was how I would probably be for the rest of my life. My magic year to get to was 1996. I thought if I could make it to ‘96 I’d be alright. Well, I made it to ‘96 and I was still very active. Things looked pretty good for me! However, in the past 5 years doctors have changed their thinking on that 5 year rule. They’ve noticed some of their patients have a worsening of their MS in years 5-10. They call this type of MS secondary progressive. In ‘96 if I had an exacerbation which is a worsening of the symptoms I’d still work and everything but I’d feel miserable. In ‘98 or year seven for me I had a bad exacerbation which I’ve never fully recovered from. I like to think I’m walking on a hill and there’s only one direction to go and it isn’t up.
MS is a debilitating disease of the central nervous system. It can affect every part of your body because there are nerves throughout your body. For some reason and doctors don’t know why but the body of a person with MS literally attacks itself. If you looked at the x-rays of my brain and spinal cord you’d see little white spots which are called plaque. Myelin is the protective sheath over the nerves like the rubber around an electrical wire. Your brain sends a signal to do something and the myelin keeps the signal going where it has to go. When scarring or plaque occurs on the myelin it interrupts the signal from the brain and sends the signal somewhere else.
An example of how the plaque affects me is this. When I have to urinate I now catheter myself. The signal from my brain to my bladder to release my urine gets short circuited. I could stand in front of a urinal until hell freezes over and I would never urinate. Not even a drop. I’m not sure where the signal goes but the cathing works great for me! This is another example. The signal from my brain to pick up my feet when I walk doesn’t fully get there. I slide my feet when I walk. Sometimes when I start walking too fast I lose my balance and sometimes I trip and fall. I have a lot of black and blue marks on my body. I also have large calluses on the bottoms of my feet from all the sliding.
The inability to handle heat is a common problem for some people with MS. I can’t stand heat so I live in the perfect place, North Dakota. When I have fevers from a cold or flu I’m not able to walk or stand at all. Fevers heat up the inside of my body. I don’t like hot showers, hot tubs or anything with heat involved. I tell people nowadays that when it hits 78 degrees outside I’m looking for air conditioning! This most definitely puts a crimp on outdoor activities in the summer. I love it to be about 60 degrees so I can wear a sweatshirt and jeans and be comfortable! It’s a good thing I live in North Dakota because we only have about 15 hot days each summer. Most of the time it’s pretty cool the rest of the year. I thought I would never say this but I do now. I tell people that I’m looking forward to winter.
Tags:Balance Problems,Catheter,Debilitating Disease,Disabled,Exacerbation,Handicapped Accessible,Legs Weakening,Multiple Sclerosis,Myelin,Nerves,Neurologist,Plaque,Secondary Progressive Ms,Three Wheeled Scooter
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