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helplinedonate
johnny

advocating for other parkies

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Ive been visiting fellow parkinson patients for many years.Since dropping my clIve become a lot more assertive Ithink c/l tends to dull or minds to much maybe a major component with our apathy.

Getting back on topic.In my history of care over six years now it seems we need a better system.This hurry up does little to provide a good care plan.The there is HIPPA that blocks others from helping.

I know many patients who really should not be in long term care but because of a lack of a  good advocate there is no escape It is so sad to see this incompetent care given on a daily basis and be unable to stop it.I'm talking to sincere friends i have in government to address this.

Another big problem is the lack of support from Parkinson organizations including the NPF.I have asked them to help both national and our area and was turned down.So Where do you go when family or patient organizations won.t advocate for you?Maybe we should remember this the next fundraiser comes around.Last time I called the hotline here said they would get back with me.I said do you know who I am.No they said what is your contact info,lol Never got a followup.

For me i guess what Dr.Low taught me has done the most good fighting PD keeping myself healthy soI can also help others

Im sure many of you also know of others who are struggling today.They need our support and we need a better system who really lives up to there words of providing the best of care.

Have a nice day and help a friend.

 

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