Parkinson :: Meds A Poison Chalice Or A Life Saver?
Dec 8, 2014
My mother died in June and was in final stage parkinsons.
reflecting on her illness and treatment I feel that not enough information is given about the long term side effects and the progression of the disease.
The drugs do reverse symptoms which does give quality of life and prolong life. In early stage parkinson's the sufferer is able to think clearly and make decisions and yet no care plan is set out asking the patient what choices they wish to make re their care. I went to every appointment with my mother . And found the doctors to treat Parkinson's like they did cancer in the past. We can't say how you will progress , everyone's different and not setting out the long term side effects of the drugs.
as a carer to prepare yourself for what you will face and for a patient to decide whether they want a long drawn out illness in which you end up with parkinsons dementia caused by the drugs you have taken or a shorter intense illness . Just as you can choose chemotherapy or not. I believe most people would choose the drugs . But the family could sit and plan their care with them. Making decisions if I can't live alone anymore I will live in a granny flat etc if I get dementia find a nursing home ....
By the time my mother moved in with us she was beginning to suffer with dementia and severe weight loss due to constant dysphasia movement of arms and legs side effect of drugs . She made decisions on her drugs all the way through and wanted more and more but she wasn't in a right state of mind .... If she had made these decisions in the beginning she wouldn't I know of chosen to be over medicated ... She ended up 4 stone 7llb with severe movement of tongue arms and legs due to drugs , suffering from memory loss and personality change brain scan showed wasn't Alzheimer's but was side effect of meds.
Action is needed to spell out the end of an illness when u r at the beginning so that you can choose your path through it.
Before she died they took all her medication away except ne .palliative care . She was peaceful calm couldn't move much it's true but she responded smiling , crying and nodding and gesturing . She was unmedicated and I thought what if ?
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Many professionals and the charity PD uk sat that you do not die of PD you die with it...BUT The world Health Organisation receive statistica from the UK about the Number of Deaths Caused By PD in the UK...PD is one of the leading causes of deaths in the UK... I haved PD and suffer from anxiety but it occurs to me on a regular basis that the lack of knowledge and information that is presented to us by a community of experts that all disagree is causing more confusion not only for the sufferers of pd , the public also find the whole thing a non starter. It is an illness for which there are no clear up to date definition and is therefore just seen an old person's shaking complaint
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What is the difference between the 2 ( sinemet- requip) and has anyone tried the fisher wallace stimulator?
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I read all these stories of parents having all these issues and suddenly their kids are on Vyvanse or something else and it's a miracle. I wouldn't mind that... him being able to function better at school (academically and socially) ... he gets bullied (though he can start it up too) - I just wonder, what next?
Here is his medication history:
August 2011 – Vyvanse ??mg (very small amount)
September 2011 – Vyvanse 30mg (adjusted to 30 mg)
May 2012 – Trial samples of Intuniv w/ Vyvanse for two weeks. After two weeks he was out of school and parents decided not to continue the Intuniv.
September 2013 – Intuniv 2mg w/ Vyvanse
September 2013 – Concerta 36mg (removed from Vyvanse and Intuniv because he became over-emotional and violent/aggressive)
December 2013 - Concerta 54mg (Dr. Snyder prescribed)
March 2014 – Methylphenidate 10mg (3 times a day) (March 7th thru March 14th)
Methylphenidate 15mg (3 times a day) (started March 15th)
April 2014 – Methylphenidate 20mg (3 times a day) (started April 14th)
May 2015 – Adderall (adderall) 10mg (3 times a day) (started May 14th)
June 2015 – Adderall (adderall) 15mg (3 times a day) (started June 3rd)
August 2015 – Guanfacine 1/2mg (3 times a day) (started August 21st)
September 2015 – Methylphenidate ER 30mg (once a day) (started September 6th)
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