Talk It Out

Imagine you were told one day that you or a loved one were diagnosed with a eurological 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 diseaseis 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 Chris 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 endsup on his lap.  Chris is wasting away; his brain cells are dying, and he hasn'€™t even had a chance to live.  Chris is 31 and his life is over.  He didnot 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. 

Chris 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, they are not educated about it.

I have dealt personally with many departments of the Health and Human Services and with 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 gets me is, "€œwe can'€™t accept your Son because his brain disorder is not an acquired brain injury"€.

Our tax dollars pay $377,000.00 per year to warehouse our son out of State and give him little to no personal care. Why can't the families get the funds to care for their loved ones in their own home. With that kind of money I can take care of both of my kids with HD.