hey zara

!
i know HD is a progressive, fatal tic-like disorder. i personally know a family that has been affected by it. several people in the family of my friend have died recently from HD. it is a very sad situation to see a family affected by HD.
i don't have HD, but i do have tourette syndrome, which is a tic disorder. i can definitely tell you that repetitive, forceful movements of one part of the body do lead to pain. at various points in time, i have had neck pain, back pain and various muscle strains from my tics. my physician and i have worked together to find the solution of a muscle relaxant and a pain pill to break my tic cycle of pain.
this woman has a fatal disease. i also don't think strong painkillers like morphine are the answer. she has several more years of life and her disease will get progressively worse. she needs to have this time now to be able to remain relatively cognizant so that she might enjoy the company of her family and friends and be able to make sound decisions on her treatment now and her end-of-life issues.
i don't think the pain and repetitive hand clenching are coincidental, as i have stated. i think this woman needs practical solutions to her problems in the coming years. perhaps her physical therapist or physiotherapist can think of some suggestions to help minimize pain from her repetitive movements. maybe giving her pieces of sturdy foam to clench would help relieve the pain from the constant hand clenching by having the soft foam absorb some of the energy from the clenching. a sleeve of foam around her arm with some lamb's wool inside might keep her arm straighter and prevent her hands from turning inwards.
i think creative thinking for problems that arise is more helpful than tests and painkillers in fatal diseases. you are not giving up on a patient when you acknowledge that they will die from their disease...it just frees you to think about their comfort and care while they are alive.
my mom has alzheimer's disease. i know she will die from it or some other condition with alzheimer's as the underlying cause. there have been many times when i have had to talk to the nursing staff and suggest ways of dealing with my mom's sometimes combative and uncontrolled behavior. i have made decisions not to treat my mom for various problems she has. i do not wish to inflict further suffering on her when her time is so short already.
you might do a search for companies that have products that help people who need protection when they inflict pain on themselves. making this lady comfortable should be a priority.
bless you for being a part of this woman's care team and i do hope you find ways to creatively deal with her situation so that each day she lives, she can spend doing things she enjoys (up to her capabilities), not visiting doctors who cannot cure her of the disease and related probs she has. at some point she might need strong drugs, but until then...
jeannie
