Cheryl Hughes
Forum Replies Created
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Hubby has Parkinson’s as well as a huge percentage of people we worked with during the 1970’s. We wish someone would investigate the environmental conditions of that location, as we suspect toxic chemicals in the soil and water. Of the almost 100 people who worked there, 15 that we are aware of were later diagnosed with Parkinson’s.
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Two things I wanted to add – our tele-med visits were much longer than the time we would have actually spent with the doctor in their office. They were both (neurologist and PCP) at least 45 minutes long. Also, we had their undivided attention, and they seemed more engaged. Perhaps it was because this was new to them and they had allotted more time for each call, not knowing what technical difficulties they may encounter. Nevertheless, I felt both visits were very personal and unhurried.
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We had our first telemed visit with the neurologist. His first words were, “Thank you for inviting me into your home.” I hadn’t thought of it that way!
Then he asked to see the set-up that we have for my husband – his hospital bed, Hoyer lift, grab bars in the bathroom, etc. I was glad I had straightened up that morning and that the bed was made!
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The fear only came after the doctor looked my husband in the eye and said, “If you get the COVID-19, you will not survive.” Those were his exact words, and they were shocking, partly because he is not usually the type to speak idle words. Then he turned to me and said, “Be careful and do not allow people into your home.”
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Kevin, please use what I wrote, just delete the final sentence “I would be honored to be featured for Parkinson’s Awareness Month as my husband’s caregiver.”
Thanks
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Hi Kevin, got your email. You have my picture. Do you want another paragraph from me? Please give me some guidance as to what you want me to say. I will be happy to do it.
Thanks
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Being a caregiver feels like one is “on-call” 24/7. It wasn’t like this at first, but after having had Parkinson’s Disease for 20+ years, my husband is totally dependent on others, usually me. Thankfully I have many life-lines: our daughters, our grandchildren, our church, our friends, and my amazing Parkinson’s support group.
Unless you live with someone with Parkinson’s, you cannot fully understand the many emotions caregivers feel and the various problems we have to solve. We need to hear that our feelings are normal, that someone understands us, and that we are not alone. The fellow caregivers in my support group have encouraged me to write a blog that has resonated with many caregivers around the world. It is an honor to be able to encourage and support those who care for someone with Parkinson’s Disease as well as any other chronic or debilitating disease.
I would be honored to be featured for Parkinson’s Awareness Month as my husband’s caregiver.
http://www.parkinsonscaregivernet.wordpress.com
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We believe my husband’s PD was caused by environmental issues. Forty years ago he was working at a school/church with approximately 100 other persons, 15 of whom contracted Parkinson’s. That seems to be an unusual amount of people. There were factories uphill and upstream from this location, and we believe something in the runoff from those factories may have contributed to this disease. We wish someone would investigate this.