Woman with Machado-Joseph Disease Keeps to Exercise Routine to Slow Disease’s Progression

The type of ataxia that runs in my family is Spinocerebellar Ataxia Type 3, aka Machado-Joseph Disease (MJD). My mother had the condition and passed it on to three of her six living children. My oldest brother,my oldest sister and I all inherited it.

My mother was pretty sure she inherited the condition from her mother, though it was not diagnosed in my grandmother’s time. Doctors thought my grandmother had arthritis and thus walked with a walker and fell often. My grandmother had five children–three boys and two girls. My mother, her only sister, and her youngest brother inherited the condition. Her two older brothers did not inherit it. On average, each child (male or female) of an affected parent (mother or father) has a 50% chance of inheriting the condition.

I will be 59 this year. I am still able to walk unassisted for the most part, but I am becoming more and more unstable. I have always been very active, athletic, coordinated, and agile. As the condition progresses, it is becoming more and more difficult for me to do the things I have always enjoyed. I was a runner but am no longer able to run, so I walk with trekking poles for stability. I have been a student of yoga for many years, but I can no longer do all of the poses without a bar or the wall to assist me. In spite of this, I continue to practice yoga as always.

I still am able to ride my bicycle, but I am aware of my balance becoming more precarious. In addition to my yoga practice and riding my bicycle on a regular basis, I maintain my fitness level by walking two miles almost daily (with trekking poles), and I do 30 minutes of muscle strengthening exercises and stretching most mornings. Another symptom of SCA3 is double vision, due to lack of ability to coordinate the muscles of the eyes. Fortunately, glasses with prisms mostly correct this issue. I also have severe neuropathy in my feet and lower legs and have not found anything to help.

I have tried chiropractic, acupuncture, medications, and massage. The Ataxia has not yet affected my speech or ability to swallow. Both handwriting and typing have become somewhat more difficult for me. I find myself backspacing repeatedly to correct errors (for every ten letters I type correctly, I backspace five). It is very frustrating for someone who was once an avid typist!

Many different types of ataxia, both hereditary and non-hereditary, have been discovered. Some types can be identified with genetic testing, but many cannot. The hereditary ataxias are often diagnosed by family history and symptoms. There is no treatment or cure for any of the ataxias. The National Ataxia Foundation (NAF) funds many research projects around the world and much work is being done to find cures and treatments. To learn more about ataxia, go to www.ataxia.org. I have found the best way to live with Ataxia is to maintain a positive attitude, remain physically active (move every day!), and rely on the support of faith, family, and friends!