One Mother's Story

Imagine you were told one day that you or a loved one were diagnosed with a neurological disease that would take away their ability to think, talk and walk. People with Huntington’s disease (HD) are born with a defective gene. The disease can be so traumatic that changes in emotions and cognitive abilities can destroy their life by the time they reach 30. What if there were no medications or cure for this disease and it would eventually cause their death. Imagine again if you lived 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), Lou Gering’s disease (ALS), or Alzheimer’s. Imagine once more that all the symptoms of the diseases above are the symptoms of this one neurological disease.

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 work out and now he barely has the strength to lift his fork. He isn’t even aware of how he looks or acts nor can he control the food that ends up on his lap. My Son is wasting away; his brain cells are dying, and he hasn’t even had a chance to live. My Son is 31 and his life is over. He did not ask for this, he did not do anything to cause this, he does not deserve this, and he is stuck with this. There is no effective treatment, there is no cure. He can not be rehabilitated. I miss my Son.

My son was diagnosed with Huntington’s disease in 2001 because he had obvious symptoms. Just in a couple years his symptoms increasingly worsened which caused his 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 disease and when the uncontrollable behaviors were present he was shipped off to a hospital’s psychiatric unit once again. After countless hours by 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 to his specific needs. A place in Maine could not be found for him because his behaviors were too complex for a facility to handle. 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. Maine does not have a long term care facility that can accommodate the needs of any person with a disease of such proportions. Working with state agencies and health care professionals can also be difficult because they don’t understand what Huntington’s disease can do to a person, there are not educated about it. I have dealt personally with many departments of the Health and Human Services, and health care professionals and they either don’t care, or don’t have the ability or knowledge. I have had facilities tell me they can’t help because Maine Care does not have a specific program to cover people who have HD, or your Son is too young and would not be a proper fit with the elderly population who also suffer from symptoms like that of Huntington’s disease, or he has Huntington’s disease but if he had just a psychotic disorder they could help him. I have been asked “was he diagnosed with HD first or psychosis? The one that really ticks me off is, “we can’t accept your Son because his brain disorder is not an acquired brain injury”.

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, is not yet incapacitated and he is experiencing the devastating symptoms. This is such an emotional and stressful disease. It is uncontrollable, it is untreatable, and it is debilitating.

The road getting proper care for my Son has been long, frustrating, and stressful. The privacy laws got in the way, if you don’t have power of attorney or legal guardianship you could be facing mountains of disappointments. Recently several people from the Maine Department of Health and Human Services worked very diligently to find a place in Maine for my Son. It did not happen, there is no place. My Son should be here where his family can visit him frequently. I have stood by my Son in the past 5 years. I fought for his housing, his care, his Social Security. Now I feel so helpless that he is so far away and he may need to see me more than I am able to visit. I know that the physical distance of his family from him is detrimental to his quality of life. If that is what one wants to call it.

I have found it very difficult to deal with the daily stress that this disease causes, but I am compelled to fight back. I have joined a support group, and I am a member of the Maine Affiliate of Huntington’s Disease Society of America/New England Region. I have 2 grandchildren who are at risk, and I hope with my efforts today there may be treatment tomorrow and a cure for the future. I only hope I have the strength to continue my endless battle.

Currently there are approximately 30,000 Americans that have HD and over 200,000 more at risk of inheriting it from one of their infected parents. Any child born to an affected parent has a 50% chance of inheriting the disease. If a child does not inherit the mutated gene from their parent, then their children will not develop the disease. Huntington’s disease is a progressively degenerative brain disorder resulting in loss of certain mental faculties and physical control. Symptoms vary among individuals and may include but are not limited to: depression, personality changes, mood swings, dementia, impaired judgment, unsteady gait, involuntary movements, slurred speech, intoxicated demeanor, psychosis, and difficulty swallowing. The end result is death usually 10 to 15 years after onset of symptoms. Usually the person with HD develops complications such as pneumonia or heart failure, and that is if he/she actually makes it to the last stages.

By Raima Fernald