by Steve Thompson
On looking back over my life, I’m not sure where all the years have gone. I know my life has been a very pleasurable journey in time. Where am I going with my life today and what is its purpose? My current health situation is based on having a debilitating condition that has affected my lower extremities and my walking; know as hereditary spastic paraparesis (HSP).
This is a genetic condition that I inherited from my father’s side of the family. It seems to have taken over my everyday life. Am I the same person I was 18 years ago, before my symptoms began? This was not the way I expected my life to be at all. Does that make me different from anyone else in the world? Can anyone predict their future? Does everyone like what they see at our older age? I guess not. However, it still seems like I’m living in a bad dream and I’m waiting to wake up someday physically normal. I keep trying to convince myself this is reality and now I must learn how to live with this debilitating condition.
In my younger years, I did not include this condition in my plans and dreams for the future. I never knew that in the future, I would have a problem that might leave me disabled. I have attempted to handle my current health situation, but what does the future hold? I had no idea just what kind of frustrations I would have to deal with and face every day. Who would have even imagined that just taking one little step could be a major physical challenge. No matter how hard someone tries to understand this, they just can’t until they are actually experiencing it themselves. People take so much for granted in life. Walking is usually not something a normal person has to think about doing. It just comes naturally to most.
Is my reason for being, to watch the ups and downs with the progression of this condition? Is this what I really want? No, I think there has to be more to this life and I have to find it. Just exactly where am I supposed to look? The answer depends on whether or not I like my inner self enough to overcome what I’ve become on the outside because of my disability. The inner me is still warm and caring and in love with life in addition to being total frustrated and full of fear and sadness over the loss of the body and the abilities that I once had.
My life has always been based on performance, activity and what I could do for or share with others. Due to my physical limitations, I can no longer live the life or participate in the outdoor or sporting activities as I have done in the past years. With my current job as permit coordinator/biologist for the SD Game, Fish, & Parks, I attempt to make the most of every day working with the public.
Unfortunately, this is the only life I have right now. I want to get a message to all the people in the world who feel they cannot or don’t want to go through life with a disability. Guess what, it can be done and it is well worth it! I am a valuable person and hope that I have been an asset to other people with my job and society as a whole.
I am 53 years old and still in love with life. Currently I can barely walk with a cane and have used a wheelchair since December, 1999. I have come a long way since I was 33 years old and started to have symptoms of HSP. I wish this was just a bad dream and I really did not have this condition. Unfortunately, this is not the case. It’s real!!! I am a person with a physical disability, whether I like it or not.
My doctor once mentioned that perhaps my neurologic disorder is closing a door for me, but may still open better and bigger windows in my future!!! He also reminded me to keep: 1) A Sense of Humor, 2) A Good Attitude, and 3) An Active Life Style. Having all three of these will not slow down the progression, but not having any one of them will almost certainly speed up the progression.
I never would have guessed that my "new life" of having a disability and in a wheelchair would have such never ending experiences and challenges every day. "Everybody has a handicap, it’s just some people can hide theirs better than others," and that is so true. I remember the days of walking with a cane and everyone staring at the crippled man. Now since I use the wheelchair, the staring has almost stopped. People are willing to get out of my way and even open the doors for me. Life must go on, so I try and cope with my disability and keep a positive attitude.
I may not have been able to live out all my dreams and ambitions, but my past years have been a very full and happy life. However, my life is not over yet. I have a great deal of living to do whether I can walk or not. Just how I handle my disability is the answer I have to find? How much harder can this life be? As I have learned, it can be very difficult. Since I have come this far, I might as well attempt to keep on going!
Saturday, September 8th, 2012
Giving Tuesday was a great start on our year end goal. So far we have raised over $37,000. Our anonymous donor will match every donation dollar for dollar up to $175,000 until January 15, 2017. That's right, every donation you make will be doubled so you will receive twice as much satisfaction and double the number of people you will help with your wonderful and most appreciated generosity. This is 40% more than was matched last year so we are asking everyone to stretch your giving as well to make sure we use every nickel of this match. We can do it!
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors - CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know we can get to our goal if we all do our very best. We ask you to please join in our efforts by making a donation.