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Topic Why We need our loved one's to advocate Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2014.05.26 19:41
Pausing on this Memorial Day to remember. Fathers, Mothers, Brothers and Sisters, Sons and Daughters.

Our World is a confusing place, time marches on and perceptions change. WW2 vets came home and blended in trying to just get back to normal life. Korean Vets a lost generation mostly forgotten. Vietnam Vet's We were reviled, scorned and grouped in to a ticking time bomb category. And now Everyone is a Hero. But these aren't the politics I want to get into.

I want to talk about advocacy, there is mentioned on another link about the NPF's aware in care kits.( ) I have one and they are wonderful! A great gift to have. One of the problems it seems with our Disease is while We are here fighting it many distance themselves from Us. Friends and even family many times. They for whatever reason avoid Us. Our Caregivers completely drained from fighting this disease with us need time to heal when our fight is done. Sometimes the memories and hurting are so deep and profound it's years before they can even bring up the subject of P.D. again.

This is a problem We all (fighting Parkinson's) face it seems each generation learn again as one progresses what the prior generation discovered. Making any headway is a slow tedious process. The kit is a prime example of this. Don't get me wrong I love the kit, it is important beyond measure! But just FYI, In 1995 Dr. Friedman wrote a pamphlet "Hospitalization of a Parkinson's Patient" It was very well received in the P.D. community and many brought it with them to the hospital when they went. (Some medical staff didn't appreciate it). So the A.P.D.A. mailed it to every Director of Nursing at every Hospital in the Country! Yet again in 2014 the N.P.F. has to hand out kits so We get the attention to our disease and correct treatment for Us? I really don't know the correct answer to this dilemma, this cyclical knowledge then loss of this knowledge. If at any given time there are 1 million P.D. patients in the Country and say 100 thousand new cases every year if just a portion of those We patients leave behind esp. Children and Grandchildren could advocate and push for knowledge and a cure our care by professionals would be better and research would be closer to wiping out P.D. in future generations. Those are just my thoughts and I welcome any other Thoughts you may have on this. And I hope everyone had as well a holiday as they were able. Take care, best of luck and hang in there

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