by Aldert Dreyer
When I was 6 years old, I began to find it difficult to put on my socks. When I started school, all the kids made fun of the way I walked and from that moment on, I started seeing doctors and specialists.
Walking was very difficult because my foot would drag along the ground or it would fall behind my other foot and I would trip over myself. If I was unbalanced, I would shake, but I could still manage to run and participate in sporting activities.
Every time I made a trip up to the hospital, the diagnosis would be different. First I was over clumsy and then it was Cerebral Palsy and another diagnosis was I was stupid. I attended physical therapy twice a week for a couple of years and then got involved in school sports. For 9 years I played hockey and 4 years basketball and after every game or training session my legs would cramp really bad and the pains began to grow (this was during my growth spurt years).
When I was 16 I was taken to a neurologist and he diagnosed me with Spastic Paraplegia. The specialist told me that my condition wouldn’t deteriorate and it would stabilize after I finished growing. Then when I was 16 I had become ill with kidney failure, and a year later I was on a dialysis machine. Because of the kidney failure, I had a lot of swelling in my legs from too much liquid in them and due to this situation my walking had become irritable and the pain was more so, there was even spasms when I wasn’t moving the muscle would just move but without moving.
When I was 18 I underwent a renal transplant and this was the year 2001. After the transplant I was giving medications and one type of the medication is known to cause shakes and tremors, as a result of this my walking has become a day to day thing. I do not use a walking stick or any other transport helping device. I’m 21 years old in March and I have had the condition for 15 years now.
Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
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.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.