Ataxia MJD.org. They Found the Gene. Let's Find the Cure.

Help for People with Ataxia MJD

Here are some resources and suggestions for those coping with Ataxia MJD:

  • The Genetically Handicapped Persons Program (for people who live in California 800-639-0597). They will refer to appropriate clinics for workups and assist with medical fees on a sliding scale basis. Other state governments may offer similar programs. http://www.dhs.ca.gov 

  • Many people are helped by supportive friends, therapists and or their clergy.

  • Take care of your health. Eat healthfully, exercise if your doctor approves and consider supplements and antioxidants such as multiple vitamins, NAC, lipoic acid, grape seed extract, Co-Q10, fish oil, vitamin E and creatine.

  • Creatine monohydrate has proven helpful in animal models of Huntington's Disease and in people with neuromuscular disease. More research with this supplement is underway.

  • It also may help you to follow the scientific research because progress is being made.

  • Engage in activities that have been stabilizing and nurturing for you in the past. Scientists have discovered that learning new activities and keeping mentally and physically active helps keep the brain healthy.

  • If you're suffering from anxiety, you might try learning how to meditate. Engaging in other mind-body activities such as art or just doing deep breathing may also help.

  • Although some antidepressants can cause frightening side effects, they can be very helpful. The trick is getting one that works well for you. If you and your doctor decide that antidepressants might be helpful, be sure you take one that allows you to sleep - some can stimulate you and keep you awake.

  • Do everything you can to live your life not "live the disease".

  • There are some helpful books such as Dr. JoAnn LeMaistre's book, After the Diagnosis.

  • Another book which offers guidelines for nutritional supplements and antioxidants for specific neurological conditions is The Brain Wellness Plan by neurologist, Dr. Jay Lombard and Carl Germano, R.D., C.N.S., L.D.N. Although it does not mention the hereditary ataxias, the information about how supplements prevent neuron damage in Alzheimer's Disease, ALS and Parkinson's seems relevant.

California Pacific Medical Center MDA/ALS Research Clinic
2324 Sacramento Street, Suite 150
San Francisco, CA 94115
Dr. Gallinas (415) 923-3604
Dr. Robert G. Miller (415) 600-3604 
http://www.cpmc.org/

Genetic Testing:
Baylor DNA Lab 1
Baylor Plaza T536,
Houston, TX 77030
(800) 226-3624
http://www.bcm.edu/geneticlabs/
- Your local lab can draw the blood with a doctor's order and ship it to Baylor per their instructions.

American Society for Experimental NeuroTherapeutics:
www.asent.org

 
 
 
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