by Thom Twichell, MS
Editor’s Note: Thom is an Exercise Physiologist. He was diagnosed with Sporadic Paraparesis in January of 2002 after two years of increasing difficulty walking and an initial diagnosis of PLS or SP. He uses a cane and a wheelchair while working full time in a regional medical health system. Thom is married to Margaret, with 2 golden retrievers in the woods of Michigan’s Upper Peninsula by the shores of Gitchee Gumee. He is happy to address individual questions.
Having Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS) doesn’t automatically give you a "Get out of Exercise Free" card. Just because you walk or wheel differently than other folks doesn’t mean that you will avoid heart disease, diabetes, cancer, or any of the other Top 10 Diseases that may be fatal. So, enough excuses. I am going to tell you what you already know: Exercise IS good for you.
Exercise (see, it is NOT a four letter word) is one way to help get you through your day, easier. I am not talking about jogging, although that picture of us trying to run might bring on the laughter. I am talking about what each of us is capable of doing, because we are at different mileposts along this journey. If you can ride a bike without falling over when you stop, you have found a good cardiovascular exercise that falls into the American College of Sports Medicine (ACSM) guidelines for aerobic activity. ACSM encourages activity that involves large muscle groups, like the arms and legs, that is rhythmical in nature, which means it is a continuous activity, that can be performed for 20 to 30 minutes or longer during a single session 3 or more times per week, and can elevate your heart rate to a level appropriate for your exercise program.
I mentioned bicycling, either outside, or stationary, as one example of meeting the ACSM guidelines. Other activities might be swimming, water aerobics, chair aerobics, or wheelchairing (is that really a word?). Snowshoeing or cross country (x-c) skiing are a couple of winter activities here in the north country, that give a great cardiovascular workout, for those who are able.
Can you think of other activities that also fit into this group? This is the aerobic type of exercise that is so good for controlling things like high blood pressure, high percent body fat, lowering "bad" LDL cholesterol and raising "good" HDL cholesterol, lowering our resting heart rate, extracting and utilizing oxygen in our blood more efficiently. Exercise can also help us to better control our caloric, intake, promote muscle strength and endurance, improve our self esteem, and may improve our overall quality of life.
Not all of us can perform moderate aerobic exercise for a number of legitimate reasons, and must work at lower levels to keep the joints loose, and to decrease pain due to tone and spasticity. For those who fit into this category, think about slow movement (I know, in our condition, everything is slow) exercises such as yoga, modified tai chi, basic stretching from head to toe, or chair exercises.
The idea here isn’t to get into the Olympics, but to help us get through the day more comfortably. We need to keep our strength up, and can do that through exercises suggested above, or we can use weights which offer resistance, to increase muscular strength and endurance. Improved strength can help us somewhat with our balance issues. Increased muscle mass can also help protect us when we do lose our balance and fall, and even though it won’t correct our balance completely, any assistance is helpful. You don’t need the 310 pound Olympic weight set you used when you played football, but some hand or ankle weights can be helpful. Think about using lighter weight, and performing the activity using more repetitions, which can give better definition to your muscles. You don’t need to go to Gold’s Gym to purchase weights. You can use items from your kitchen to start with; soup cans, milk bottles that can be filled with sand, pebbles, or water to adjust the amount of weight you would lift, coffee cans filled with sand, pebbles, or water. Be resourceful and creative. This will exercise your brain a bit, also and we all benefit from that.
Tips for beginning an exercise program, with your physician’s approval, of course:
According to the American College of Sports Medicine, "the biggest risk to exercise is not starting".
Before I got to work I don’t have much time so I:
ride an exercise for 5 – 7 minutes to warm up then
stretch for 5 to 6 minutes then
do light exercise for 5 minutes: pushups, leg curls (I put on ankle weights and lie on my stomach on flat weight bench), calf raises
Then at night I do arms or legs:
bike 5 minutes
stretch 5 minutes
then a second set of each
bike 5 minutes
stretch 5 minutes
squat with barbell on shoulders
then a second set of each
To improve, just add a little more weight each week.
I swim about once a week but before I discovered this method I would do more strenuous exercise, get tighter and tighter each day, then have to swim and the tightness cycle would start over.
With my new method I feel good all the time.
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.