(Editor's Note: Raima sent an Email letting us know she had an article available. You can contact her through the web site listed at the end of the article. The story has been edited slightly for clarity and to fit our mission. Your submissions on disability and life related subjects are welcome at AbilityMaine.   —Steve Hoad)

Imagine if you were diagnosed with a neurological disease that would take away your ability to think, talk and walk. Imagine that there are no medications and no "cure" for this disease and that it would eventually cause your death. You live in a world that doesn't even know what the disease is because it's not as well known as Multiple Sclerosis (MS), Parkinson's disease, Muscular Dystrophy (MD). Imagine once more that all the symptoms of the diseases named above are included in this one neurological disease.

I'm writing about Huntington's disease and my son was diagnosed with it in 2001. Just in a couple years his symptoms worsened increasingly which caused the disease to escalate, and gradually forced his admission to many different psychiatric hospitals in Maine. He finally was found to be incapacitated by Maine law in 2004. He was accepted into a nursing home in Massachusetts that could deal with his medical needs. When the uncontrollable behaviors were present he was sent to a hospital. After countless hours spent with hospital staff and the Department of Health and Human Services in Maine a facility was found in Massachusetts. This facility is still only a band aid for his specific needs. A place in Maine could not be found for him because his behaviors were too complex. His current needs would require a facility to hold a specific license to cover a person needing both a hospital level and nursing home level of care in a long term care setting. Maine does not have a long term care facility that can accommodate the needs of any person with a disease of such proportions.

I have dealt with many divisions of the Health and Human Services department and many health care professionals from numerous hospitals and they lack the necessary knowledge about HD (Huntington's Disease). I have had facilities tell me they're unable to help because Maine Care does not have a specific program to cover people who have HD or because he is too young and would not be a proper fit with the elderly population who also suffer from similar symptoms. If he had just a single disorder such as a psychotic disorder or just a medical disorder without the psychiatric component they could help him. I have been asked "was he diagnosed with HD first or psychosis?" That's like asking me what came first the chicken or the egg. I just don't understand why that should matter. The response that really annoyed me was, "we can't accept your son because his brain disorder is not an acquired brain injury."

The road to getting proper care and services for my son has been long, frustrating and stressful. The need for our family to be close to him is essential to his quality of life. I just feel so powerless and perplexed that in this day and age with all the medical knowledge and medical facilities that there is no place for my son in Maine.

There was a time when I could talk to my son and get a conversation, now he looks at me as if I have two heads. I remember when he would smile, now it seems as though he has forgotten how. I remember when he would go to the gym everyday and now he struggles to lift his fork. The food he eats ends up on his lap and he isn't aware of it. My son is wasting away, his brain cells are dying, he hasn't had a chance to live; he is 31 years old.

I have two grandchildren at risk and my son's father lost his battle to Huntington's disease at age 45. My other son has also been diagnosed with Huntington's disease and he is slowly losing his brain cells. He can still care for himself and is not yet incapacitated but he too is experiencing some of the devastating symptoms.

Currently there are approximately 30,000 Americans that have HD and over 200,000 more at risk of inheriting it from one of their affected parents. Go to http://www.hdsa-ne.org to learn more about Huntington's disease.

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