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Ben is Coping with Huntington's Disease

Ben is Coping with Huntington's Disease.

Ben, how HD affects him and how he is dealing with it.

A Dear Male Friend has Huntington's Disease.

A dear male friend who I met while both of us attended a rehab program has Huntington's Disease. It is also known as Huntington's Chorea. Chorea means involuntary movements usually involving the voluntary muscles. In other words, mostly twitches, spasms and similar moves.
Getting back to my friend. I remember him before the disease began to clearly manifest itself. He was a bright, creative young man. He is in his mid forties now. Now I wonder if his depression was caused by the very real fear of inheriting the dreadful disease or if the mood disorder was already part of the disorder. One of the signs of Huntington's is depression. I would think knowing you could inherit a condition that destroys not only the body, but the mind as well and there is no cure could cause someone to be terribly depressed. Irregardless, clinical depression is one of the symptoms.
His progressively worsening involuntary movements is making it increasingly difficult to take care of himself, to live independently.
As I wrote before HD also effects one mentally, not only with a mood disorder. It is also considered a dementia.
That is causes memory and thinking, judgement impairments. In the latter stages people with Huntington's have to be in full care nursing homes, protected from themselves. They could very well inadvertently do something dangerous because of poor judgement. For example accidentally start a fire.
For his mood disorder he is in a partial program. His father and his very supportive male friend is giving him moral support. Unfortunately his younger brother has the same disease. His father's late wife passed away from Huntington's. I feel great sorrow for the entire family.
There are only pallitive treatments for the symptoms. Psychotropics for the mental disturbances. I know there are some anti-alzheimer drugs such as Aricept, Tacrin, Hydergine. I don't know if they work for Huntington's Disease.
There is a study going on in Wash. D.C studying an anti-parkinson's medication. Cannibis, ie, manijuana has been seriously considered to help with the involuntary movements.
I think its terribly unfair and cruel to not have legalized medical marijuana for patients who it would do most good. Many people with terminal illnessess who are suffering with excruiating pain sure could use the pain relief. The least they could have done for them to have something help relieve their misery. Also for people with HD cannibis may help with their muscle spasms and other involuntary movements. Lastly personw with HIV/AIDS, and non-terminal stage cancer grass may increase their appetite. thereby increasing their chance for survival.
If anyone knows of any experimental studies, please let me know.
My male friend and I will be greatly grateful.
Thank you
For more information, support please contact your local Huntington Disease Society of America. Web site on the Internet.
Note: This article replaces my earlier HD article. "A Dear Male Friend Has Huntingtons. Typed it Huntongton. typo obviously.

I also have an article on how a common antibiotic-a tetracycline may be helpful in treating this dreaded disease. Its at http://www.writtenbyme.com/content/70095

Disabled disability activist for over twelve years with local Greater Phila, PA disability organizations.




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