How I’m working to mitigate the risk of stroke with Fabry disease
I plan to exercise more, but there's a catch
In a portion of the population with Fabry disease (FD), strokes and transient ischemic attacks (stroke-like symptoms that last only a short time) are a common manifestation of the disease. As a Fabry patient, the potential for stroke is scary. In 2011, a cousin of mine who had FD tragically died of a stroke at the young age of 49. It was her first known FD symptom, and she didn’t have any others to warn her of the risk.
It’s difficult to gauge whether we patients are doing enough to minimize the risk of stroke. I’ve been fortunate in my life to have had my blood pressure checked regularly, and it’s always been normal. I’ve had good cholesterol levels, despite having progressive heart failure and a heart transplant four years ago. We controlled the many ventricular arrhythmias I experienced before my transplant with an implantable cardioverter defibrillator (ICD) that stabilized my heart rhythm and lessened the risk of an arrhythmia-induced stroke. Even though I’ve had many other FD symptoms, I wasn’t worried about having a stroke because I had an ICD, normal blood pressure, good cholesterol, and healthy eating habits, and I exercised.
Nevertheless, I’ve been experiencing some concerning changes in the past few weeks. My diastolic blood pressure levels are trending higher than normal, which is unusual for me. It’s been comforting all these years to not have to worry about high blood pressure in addition to my many other FD symptoms. The chronic edema in my lower legs, ankles, and feet — also a common manifestation of FD — has gotten worse. I typically manage it by walking frequently, wearing compression socks, getting enough sleep, and staying hydrated.
With no direct way to reduce the risk of stroke, I must rely on these types of activities. In a previous column, I discussed how I try to stay as healthy as possible. Now, I must take my game to the next level by walking more often at a faster pace and for a longer distance. I need more aerobic exercise, but I have some obstacles to overcome first.
I wake up every morning to severe sciatic nerve pain that radiates all the way down to my left calf. Standing properly and then being able to walk without pain takes me about 10 to 20 minutes. Then, after that’s resolved, I’ll often experience severe pain in my sacroiliac joints and lower back, especially when I lift or carry something. The problems with my hips, legs, and back hinder my walking, which I need to do to control my blood pressure without taking heart medications.
Taking action
Jerry Walter does his last 10 pushups (plus 15 extra) to meet his goal of 1,000 pushups in 30 days at the National Fabry Disease Foundation’s 13th Annual Fabry Family Camp on Oct. 19 in Randleman, North Carolina. (Courtesy of Jerry Walter)
I visited my physical therapist last week to learn new exercises to improve my back health and walking ability. Once I return to walking more aggressively, I hope to lower my increasing diastolic blood pressure and stroke risk.
Last Thursday, I visited my physiatrist to receive a second epidural spine injection to attempt to relieve the sciatica. A month from now, I’ll return for another injection, unless the sciatica has eased, in which case I’ll get a cortisone shot to treat the sacroiliac joint pain. I can get 10 epidural spine injections a year if needed, as long as they’re spaced out with a month in between.
Along with injections, physical therapy, and walking more aggressively, I do other exercises to stay healthy. In September and October, I challenged myself to do 1,000 pushups in 30 days. I arranged to have 100 sets of 10 pushups videotaped to meet my goal. I completed the last of them on stage at the National Fabry Disease Foundation’s 13th Annual Fabry Family Camp on Oct. 19 in Randleman, North Carolina. Gwen at the camp’s “Fab Shop” dyed my hair a lovely blue and green.
Over the years, I’ve learned the importance of continuously monitoring the manifestations of my disease to stay as healthy as possible.
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.
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