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My mum is in the end stage of Parkinsons. The doctors have now taken her off most of the medication she was on as they say that because she has had Parkinsons for almost 22 years the medications do not work as they should. I could do with talking to others that have had or know someone that has had Parkinsons for this length of time. I'm so worried at the moment as last week mum was put on another drug to help keep her calm its called Trazadone but it has made her even worse she has been like a… read more
For all the caregiver in regard to the person that you are taking care and has a lot of off time please ask your neurologist why he is not recommending the Doupa pump which you only have to connect the PD person to the med in the morning and disconnect at night and some PD patient are actually using it at night also. It has been approved by the FDA for over 6 years, when my husband was on it the quality of life was wonderful and prior to the Duopa pump when he was on carbidopa/levodopa when he had off time I would give him an injection called Apokin and within minutes he was on. My husband has had Parkinson for over 30 years yes it was hard but by learning abut these medication it made life a easier for hm and me.
My husband as had Parkinson for over 20 years and is in stage 5 and h
as dementia that is to me the hardest thing because there is no conversation between us. He is now with the duopa pump in his stomach which the carbidopa levadopa goes continuously into his stomach so he does not have off or freezing time, when he was on the oral medication and had off time I was able to give him Apokyn injection [apomorphine hydrochloride injection] and within 5 minutes he was able to function, I don't know why the neurologists do not let patient know about those injections, when he was on the oral medicine it was really great. I don't know which is worse Parkinson or dementia I wish I could find a support group to be able to get some recommendation on what they are doing.
I have had PD for almost 20yrs. I have had to reduce my sinemet because the dyskinesias were becoming so violent and relentless. I also stopped taking Amantadine because it seemed to make me delusional. It got to the point that I was imagining seeing things and hearing people talking and loud banging noises. My wife Would have to bring me back to reality.
The Dr put me on Effexor. That seems to have helped to lift my mood a bit - no side effect so far. Been taking it for 3 months now.
I am my husband’s caregiver and don’t have PD myself, but wanted to mention that I have been taking Trazadone for sleeping for years with no problems. I began taking it because of my insomnia with Fibromyalgia. I take 50 mg. a night.
So sorry for your loss. Be kind and gentle with yourself.
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