My sister in law was diagnosed with CBGD a... - PSP Association
My sister in law was diagnosed with CBGD about 3 years ago. Did anyone else experience a deterioration of symptoms after Lumbar Puncture.
My late husband had a lumbar puncture prior to diagnosis of CBD. This was done to eliminate MS etc.
Because we did not understand CBD at the time it is difficult to know if it made any difference.
Understanding PSP & CBD is not something you learn overnight. I found the PSP Association the most helpful.
(Neurologist just told us what is was and you will die, usually at around eight years after diagnosis and come back in a year if you want.) Sorry if this sounds blunt but that is wat he said.
Sorry I can't be of more help.
Thank you Springbank. I am so sorry to hear about your husband. My sister in law had three lumbar punctures and reacted very badly after each one. We felt she deteriorated very much afterwards. She had to stay in bed for two weeks after one. She then fell and broke her good leg which did nt help her mobility. She now has nt use of her left side and left hand is "alien limb" and needs help with everything. She is so lucky to have a wonderful husband who is the best carer anyone could wish for. She is 67 and he is 73 and we worry about his health. In Ireland the economic downturn has caused cut backs in home help and they only get 3 hours per week.
My husband only had one Lumber puncture but no noticable after effects. When he was diagnosed there were seven neurologists and it was his right hand - slightly alien limb - that convinced them that he had CBD. Later he had a slightly alien right leg to match, making it impossible for him to use a walker. I first noticed when he started to carry his shoulder at an odd way, sort of left behind the body. He was also experiencing not being able to tighten things properly.
The social worker assigned was very good and I had two six hour allocations which increased to an extra four hours. I was also running back and forward to hospital as my mother ( now nearly 95) had broken her leg and hospitals don't do clothes washing. Still didn't get any "me" or "our" time. The carers that were assigned were excellent.
Not sure about a puncture but I do know that if dementia patients (PSP, CBD, AD) go under anasetic that often they don't return to the status they were before. This is why it is very important to stop falls that may require hip replacement or other operations. I definately would not undergo any elective surgery for my wife who has PSP. I verified this through a family member who is an anathesiologist. He said you may return to where you were but many times patients with dementia don't. Perhaps someone else can clarify this for us.
Jimbo
Thank you Jimbo. That is interesting.
When residents at the care home i worked at had operations, especially after falls, they often came home with the dementia worse, the doctor explained that it was the unaesthetic that caused more brain damage if the brain was already damaged. Also it depended on how long they were under. I remember one lady that had an arthritic knee, she was in her 70's and in the beginnings of dementia but only mild, her family talked her into having her knee replaced, they payed privately. When she came home she could not walk and in more pain, her confusion had got worse, her family regretted having the operation. IF the operation is not really necessary i think we should avoid them !!
