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, 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.
