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So many years

My father was diagnosed with Parkinson’s Disease sometime around 2001. His hands had been shaking for years but he wasn’t one to go to the doctor unless he absolutely had to. He had already retired and was taking care of my mother whom had early onset Alzheimer’s. He spent years acting like nothing was wrong and went on with life as usual. In 2009 he had to have a fusion in his lower back. He never regained the same level of normality after that.

The hard fight

By 2010 he made the painful choice to put my mother in a nearby skilled care facility. He visited her every day and stayed active but he started stumbling often. Our family went and checked on him regularly usually twice a day. In 2003 he had some pretty bad falls one of which was outside in his driveway. Thankfully someone driving by saw him and stopped to call an ambulance. This scared all of us enough he finally moved in with me and our family. He was often very depressed, he had built his home, taken care of his family, and spoiled us all rotten. To have to be taken care of was extremely difficult on him.

He enjoyed children that always ran around our home and worked so hard to maintain his physical abilities. I stopped working to care for him which we had discussed. He helped pay bills but we would have figured it out regardless. He declined what I believe was fairly quickly over 5 years. The biggest decline happened in July 2017. He had gotten pneumonia again it had become almost a constant problem due to aspiration. I allowed a feeding tube to be put in. I thought it would help build his strength up and he would be able to eat and use the g-tube for medicine and extra fluid. He never regained use of his throat muscles. In the end he aspirated on his own saliva. My father and my family fought this disease so hard. He passed away January 25th 2019.

Getting involved

In our fight I found so much ignorance about this disease. I studied everything I could find about it and he tried just about everything I suggested. It shocked me how unfamiliar some of the doctors in our area where with some of the symptoms. Most only knew about the shaking and gate issues. I would love to find some way to contribute to helping educate people about Parkinson’s. I live in the St Louis area and haven’t found any groups. I have actually had several ignorant people say to me recently he could not have died from Parkinson’s it doesn’t kill people. Any suggestions on how I can make difference would be appreciated.

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  • Sharon Krischer moderator
    9 months ago

    Trish, I am so sorry to hear about your experience with doctors. It happens all too often, unfortunately. I would suggest that if you want to start advocating on behalf of People with Parkinson’s, you should look for activities in your area sponsored by any of the Parkinson’s organizations, such as the Fox Foundation, Parkinson’s Foundation, Davis Phinney and APDA. Many of them train volunteers to speak to doctors, patients and the community at large. You should also explore the website for information that you can use when talking to others about living with PD. Sharon Krischer, teamk

  • Anika
    9 months ago

    Hi trish,

    I have PD and have had a similar experience with health care professionals and the general population. Most people have a quite limited understanding of the range of symptoms and of what it’s like to have Parkinson’s. I’m impressed by how long your father survived and how determined he was to try to continue living. I can understand your frustration with the statement — in one form or another — we all hear, “PD is not fatal.” Okay, so we die of “complications of PD,” which I think is not a whole lot different from dying from PD. I have a feeling that this concept of a kinder, gentler Parkinson’s has been brought to the forefront by those who don’t want to scare newly diagnosed patients. I don’t like to dwell on the many (many!) problems this illness can cause; there are other health issues that are much worse. But I’m beginning to think about just which treatments I’m willing to try. Some would prolong life but not living.

  • trish author
    9 months ago

    Thank you and I hope the best for you. I am appreciative of your comments. He tried so many things and hung on so long for those of us he was leaving behind. He always worried about others more than himself.

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