by Brad Hendricks
My story of HSP is not so different from many others. As a child, I was a "klutz", and had weak ankles. I never could ice skate or roller skate, and avoided moving backwards, as I would fall over. In my teens, I did play handball, racquetball, and volleyball, but nearly every round I would fall
into the wall, or onto the ground. Running backwards was a disaster. As I have, over the years, learned how to fall with no or minimal damage to my
body, my falling over often injured my volleyball teammates more than I. Eventually, I had to give that up.
I never knew my biologic father, but did find out, after his death of heart problems, that he had some sort of neurologic problem. For years, I noticed my worsening symptoms, which got even worse if I drank alcohol, but just wasn’t inclined to find out the cause of the problem. Looking back, I now know I was afraid of the truth, but was much too macho to even admit the possibility.
As I entered my thirties, I become more and more aware of "The Problem". In my 40’s, I started to become embarrassed and self-conscious of my instability. My wife finally encouraged me to seek medical help.
In 2000, I was diagnosed with one of the myriad forms of FSP. Diagnosis was a long and confusing diagnoses made by eliminated other possibilities- MS, Parkinson’s, ALS, etc. After a couple of years of taking oral Baclofen and enduring the side effects (sleepiness, sluggishness, mental dullness), my neurologist suggested the Medtronic intrathecal pump, which was implanted in August, 2002.
Mine has been a success story. The drowsiness disappeared, and my performance at work showed an immediate improvement. After a period of adjustment to find just the right dosage rate, I came to 60 mcg/day. As the disease progresses, I found it necessary to increase the dosage every other refill.
Currently, I am at 80 mcg/day and will increase it to 84 next refill. A pain management doctor administers my pump, and I visit my neurologist just twice a year. Except in my home or at the office, where there are walls and furniture to hold on to, I use a cane in all my daily activities. I am able to continue to fully perform my job duties, though I do tire more easily.
Fortunately, my employer and co-workers are superbly helpful at any time. Also, fortunately, I can delegate some work that I find too difficult. I quickly learned my limitations. I visit the gym 3-4 times a week, before work. I find that exercise early in the morning "sets the tone" for the rest of the day. I stop whatever I am doing 3-4 times a day to stretch my arms, legs, neck and hips. Because I am afraid of pulling out the catheter in my spine, I limit any stretches or exercises that involve a twisting motion.
I try to get out to walk my dog each day, or push my wife, who has severe arthritis, in her wheelchair. Walking is the ultimate exercise to improve breathing and to keep muscles in shape, so important to help avoid falling and hurting myself. I still fall occasionally, crash into walls, and cannot lift my feet enough to clear a garden hose.
Throw rugs are generally verboten at my house. The fear of falling is with me every minute, and I have found myself having to slow down and consider carefully everything I do, even each footstep. This is not as hard as it sounds, as now it is purely habitual.
I have long since stopped asking "why me?", and revel in the ways that my handicap brings out the best in other people. I have "met" many wonderful people, both in my day to day life, and on the HSP Listserv. I never tire of hearing how others deal with their personal challenges. They are inspiring and educational.
My HSP has brought out in me the kinder, sympathetic, better listener. My faith allows me to truthfully thank God for giving me this "handicap" that I consider to be, a minor inconvenience. I know that HSP is unlikely to shorten my lifespan, and although it does make my life more difficult, I have been happy to adapt, and find myself looking forward to each day to find how I can be a source of encouragement to others.
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.