7166137's blog: "What's on my mind"

Fifteen years ago, the first of the symptoms started. I probably noticed it earlier than I would have because it started while I was running in the neighborhood to practice for the semi-annual PT Test. I was finishing 1.5 miles in slower times and could not believe I could not do it any more.
A couple years before that, ex wife #4​ sensed something and sent me to have a doc look at it, but since I was able to get around good, and still run, it didn't go beyond that.

Looking further back, I had two people, ex wife #2 noticed something when we were dancing more than 20 years ago, and a shipmate noted that he could pick me out in a crowd because of how I walked different. That was close to 30 years ago.

This thing I have, I have had my whole life. I remember running on the flight deck of the Kearsarge, shipmate Chris was trying to encourage me to take longer strides to be able to run faster. In 1994, I failed the PT Test by a few seconds, but passed with excellent on the run portion after six months with what was loosely called the fat boys club. The one skinny runt who looked so out of place.

fDiagnosis for this was also just as slow. The first neurologist didn't say specifically but after my first tests ruled out any condition that was life threatening, he told me he thought I had ALS. No diagnostic tests were able to find anything. On Orthopedic specialist actually put in my record that I had Cerebral Palsy, and had to explain that several times. 

The progression of this is extremely slow. Try to imagine a weight on your toes that makes you drag your foot with each step. Couple that with wearing several pairs of socks so your lower leg muscles can't relax all the way.  Nothing about this is painful, but people think it is. Other's inadvertently associate physical retardation with mental retardation. To make up for the lower legs neurological malfunctions, the upper legs do all the work. I can't run at all, yet I have the muscle tone of a long distance runner, from the waist down.

This is genetic. Probably the one thing going for me is that I didn't spread it any further with children. It's fortunate that it did not affect any blood relatives that I know of. Statistically, and there really isn't much to go with on this one because this condition is so rare, at the onset of the symptoms, most are in a wheelchair at fifteen years. I can't speak for my twin brother  on this one, but I am in no hurry to get me one, or a motor scooter.  The so called experts say this is muscle weakness but the opposite is true. I have to think out each step, so talking while walking will slow me down even more. I can't ask anyone to go through life always walking as slow as I do. One good thing about having a twin with this, my ex wife #5 used this to find the condition, and after a new genetic test, it was confirmed.

Getting around is tough. After sitting or laying the first few steps are very awkward, but over time, the legs loosen up and it gets better. Not much faster but better. I get people offering to open a door but I don't like to make them wait. Someone behind me think's they're doing a favor by pushing the automated door open button but that messes me up, so I have to stop and tell them to just go past me. I know people mean well so I have to smile and be thankful.
All of this makes me not want get out and about. I can do some job searching at home, but I still have to put on the monkey suit for a job fair or an interview. Interview techniques? Throw them out the window, little of what i say is heard in my skill set or experiences. What comes in loud and clear is potential liability and what I said at the beginning how people associate the physical with the mental. 
I have closed off my social life to that which I do online. I do have to grocery shop and since I always go to the same store, I am recognized and the baggers know to not give me many bags with little in each, I can handle it. I also have reduced my large house to just the areas I really need, nobody has been upstairs in more than a year. I am an introvert who has always wanted to feel included or be invited. These past few months after losing that job, I have almost become a hermit, and I need to figure out how to get out. I don't want to take any job that comes along for this and be as unhappy as I was at the last one.

To avoid confusion, I am placing the exact diagnosis here.

Hereditary Spastic Paraplegia and its related condition Primary Lateral Sclerosis (not hereditary) are both rare. This is what I have. It's so rare that I have not met one person other than my twin brother who also has it.