Leading HSP neurologist and researcher, Dr John K. Fink of the University of Michigan shares this communication on his recommendations for exercise.
Hello everyone,
As requested, this is a brief overview of my recommendations for exercise in HSP and PLS (Primary Lateral Sclerosis). One caveat: my recommendations are not based on scientific research of exercise methods in HSP and PLS. These recommendations are based on talking with many individuals with gait disturbance and finding what seems to be helpful.
.
The basic concepts are to a) find the problems, b) address the problems specifically both as isolated exercises and importantly, through complex task-based exercises; c) keep score of your progress, d) when tasks become easier, change the routine to make things more challenging; e) expect improvement (recognizing it will be slow); f) core muscle exercise and aerobic conditioning are key.
Here are a few notes:
Identify the factors that make walking difficult. HSP and PLS affect walking differently in each person. For some individuals, spasticity (affecting hamstrings, quadriceps, adductors, “heel cords” in variable proportion) is the major problem. In other individuals weakness (hip flexion, foot dorsiflexion, hamstrings for example) or endurance is the major problem. Often weakness (in certain muscles more than others) and spasticity (in certain muscles more than others) occur together (in variable proportions) with balance difficulty and slowness in muscle activation.
Consultation with a neurologist, physiatrist, physical therapist, personal trainer are often helpful in identifying which factors are particularly problematic. This is the basis for developing a function-specific exercise program.
Develop an exercise program that:
a) “starts low and goes slow” (begin with something you’re capable of and increase the frequency and intensity by approximately 10% each week)
b) is graded (increasing intensity and frequency)
c) is monitored (by you, keeping track of performance, and by your therapist or trainer)
d) addresses the function-specific goals
e) is varied (monotonous routines are difficult to maintain)
f) has days off each week where other exercises are performed
g) ideally is done with exercise partners (activities that are performed completely alone are difficult to maintain).
Both complex/contextual exercises (e.g. climbing gym, water aerobics, kicking a weighted ball) and isolated exercises (leg lifts, abdominal exercise “crunch” machine at the gym) are useful.
In my view, the value of stretching, balance, core exercises, and aerobic conditioning can not be overstated and should have a central place in the exercise routine. In my opinion, “exercise frequency” (4 to 10 times a week) is at least as important if not more important than the intensity of a given exercise period.
I hope this is helpful.
Sincerely,
John
John K. Fink, M.D.
Professor, Department of Neurology
University of Michigan
I am 76 years old, and my disease became obvious in my 40’s. I have a brother, Bill, who was in his late 20’s when he had great trouble first exercising, then running, walking, etc. He was told in Portland Oregon by seven Neurologists that he had Lou Gehrigs’ disease, and then they contacted him later (six months) to say he had HSP.
He is two years younger than I am and has a much more advanced case. He has such heart and fabulous ability to get through life sharing joy with friends and family, a fabulous sense of humor, etc. He goes to his physician to have medicine put in a tube in his spine. His legs are now fairly limited. We did not know about our disease and neither did our father who didn’t have any signs of the disease until his mid 70s’. Dad’s father left his wife, two daughters and him with a lame excuse before he was obvious to the family. I figure that he left his home in Wisconsin, landing in the midwest where he fell mutually in love with my beautiful school teacher grandmother to be. They headed out to Oregon and settled in the Willamette Valley. We both have children, my brother and I and 10 grandchildren. I have six boys and he has two boys. Anything we can do to help further along a cure or anything resembling a chance of a cure we will be willing to try. I would be willing to act to make money for whatever. All the best, Kathleen