I Have Hsp And I Have Found A Way To Manage It And Stay Healthy!!!!!!!! You Can Too!!!!!!

Working Out made me feel Athletic Again

By David Hawkes

I played every sport imaginable growing up. I was always obsessed with playing sports. I loved to compete. I excelled in basketball and tennis. I was captain of the tennis team in college. Unfortunately after I graduated college I started having trouble with my balance and coordination. Like anyone would do I went to my doctor to see what was wrong. 8 years later, about 8 neurologysts, 1o MRI’s, spinal tap, and many more uncomfortable tests I was diagnosed with a very rare hereditary neurological disorder called HSP. HSP – Hereditary Spastic Paraplegia refers to a group of inherited disorders that are characterized by progressive weakness and spasticity (stiffness) of the legs. Early in the disease course, there may be mild gait difficulties and stiffness. These symptoms typically slowly progress so that eventually individuals with HSP may require assistance of a cane, walker, or wheelchair. I couldn’t run anymore. I have difficulty walking because my legs are so tight and stiff. I lost one of the most important things in my life – The joy of competing in sports and feeling athletic. I would have done anything to feel athletic and healthy again, like the way I felt after playing tennis for 5 hours or playing pick up basketball all day. The problem was simple, what can I do safely to feel athletic that doesn’t require running, jumping, kicking etc… The answer I came up with was lifting weights. But, I had no experience with weight training. I was a skinny kid who never thought about the many positives weight training can give you. Luckily I had a few close friends who brought me into the gym and showed me many lifting exercises and more importantly showed me the proper form. I even learned a weight training program where I worked on a different muscle group to target each day. I would do chest, bi’s and tri’s, shoulder’s, and back followed by 15 minutes of stretching 5 days a week for 10yrs. I would write the name of the exercise , number of set’s, and number of reps for each exercise I did in a notebook after every workout so I could make goals for myself and see improvement. I have been working out like this consistently five days a week for the past ten years.

At first it was very hard. I was extremely sore and I wanted to quit everyday I was in the gym, but I kept at it. I got every ounce of stress, frustration, and anger I had that was built up because of my illness out in the gym for an hour five days a week. After time, I didn’t get as sore anymore and really became obsessed with working out. I loved the way it made me feel. I admit it was nice to see myself with muscles that I grew because I worked so hard in the gym, BUT the best benefit about working out was the way it relieved all my stress and anxiety. I never thought in a million years I could feel so good physically by just sticking to a routine in the gym and make sure I eat and sleep well. Other than than the psychological benefits, working out makes me sleep better, increased my immune system (I am rarely sick), and in time it changed the shape of my body. I can honestly say I am no longer angry or frustrated because I can’t play tennis or basketball anymore. Infact, I am very thankful because going through it all caused me to find my new love – Physical Fitness. I plan on taking care of myself and going to the gym five days a week for the rest of my life. And if anyone is reading and is going through an illness like HSP or knows someone who is, please start a weight training program. It will change your life…….

dhawkes77 dhawkes77
3 Responses Apr 16, 2011

Consider joining a Crossfit box. Be sure it is one that will modify your workouts for what you are able to do. I have HSP and have been going for about three months. It was very hard at first but now I can do things that I never dreamed I would be able to do. I lifted weights prior to this which helped a lot. My coach is a gift from God because he knows the muscle issues I have and always considers that when assigning weights or workouts for the day. If your coach won't change the WOD go to a different Crossfit.

I mainly have muscle cramps in my left buttock and left leg. I also have a constant pulling feeling in my back. I lift weights about four times a week. What exercises do you find are the most helpful? I also ride bikes and walk because jogging has become to difficult. I do not need a cane but stumble frequently and loose my balance easily.

David thank you sooo much for sharing your story! My son has just been diagnosed, he only 13 though. I've heard that in children, especially during the growing phase, that weight training is not a good idea, or maybe they are talking about "extreme" weight training. Any thoughts on his age group and weight training? How are you doing physically? What do you find to be your biggest challenge.

May I suggest that your son try Crossfit. You may have heard terrible stories about Crossfit but if you find one that modifies the workout for each persons ability, you can achieve great results. I have HSP and have constant muscle cramps. I thought my husband was nuts when he suggested it. But I am able to do things I never thought I would ever be able to do again. I ran my first mile today! I have to stretch daily because my left side stays cramped up so bad but Crossfit in combination with that has been a lifesaver for me. Oh if the Crossfit coach won't modify, go somewhere else.