March 19, 2020 at 9:25 am #18327Mary Beth SkylisModerator
Hi Everyone! The month of April is Parkinson’s Awareness Month. And Parksinon’s News Today is interested in featuring a few people on social media and within our forums. We’re looking for caregivers and patients who would be willing to tell us a little bit about their story. What has your journey been like? And what have some up the highs and lows looked like?
If you’re interested in participating, please comment here or reach out to me directly. I’d love to use this as an opportunity to shed some light on Parkinson’s. And I can’t do it without you 🙂
March 19, 2020 at 4:24 pm #18335Tahmy MooreParticipant
I would love to share my story. The short version is as follows; I am a 50 year-old mother of 3 girls (22 yrs, 21 yrs and 18 yrs). I was diagnosed in 2011 when I was 42 years-old, but had been seeking a diagnosis since fall 2009. It took almost 2 years of nerve testing, physical therapy and guessing before a doc gave me carbidopa levodopa. My symptoms improved within the first day. I then went in for a DAT Scan which confirmed the loss of dopamine in my brain. Medication dosage has been my biggest battle. My “On-Time” and “Off-Time” have seesawed throughout the past 9 years. Physical exercise remains my best medication. Working out with a trainer for the past 18 months has been in great shape and able to minimize the effects of my Parkinson’s symptoms.
March 20, 2020 at 8:41 am #18336Cheryl HughesParticipant
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.
March 21, 2020 at 6:49 am #18340Mary Klein / John KleinParticipant
Our best friend struggled through being a full-time caregiver for her husband who had Parkinson’s for approx. 15 years. Most of those years they did well. The last 3 or 4 were far more challenging (also his age was advancing – he was 80 by then – but formerly very young for his age – in looks and actions). If I didn’t know otherwise, I would have thought that she wrote your words! This is exactly how she describes her journey! My husband was just diagnosed about an year ago but he is doing very well and not on any medication at this time. We thank you for your openness and sharing your experience. Many, on the outside, don’t appreciate or fully understand the role the caregivers have. I think this is partially because they don’t under the disease. On the outside, it has certain presentations but the unapparent ones are equally as debilitating.
March 21, 2020 at 10:52 am #18341STEVEN OPPENParticipant
Dear Mary Beth,
I would like to take a somewhat different tack in my response, but it’s going to take me some time to put it together. It’s likely that I won’t have it ready until next weekend. Is that OK?
March 31, 2020 at 10:09 am #18384STEVEN OPPENParticipant
When I saw that Mary Beth was asking readers to provide some input for April’s Parkinson’s Awareness program, I knew that I wanted to take a somewhat different approach. I’ll use my allotted space to make you aware of a fabulous organization – the NeuroChallenge Foundation for Parkinson’s (NCF) https://www.parkinsonsneurochallenge.org/
NCF is located in Sarasota, Florida, and has been serving the PD community for over ten years. From humble beginnings, NCF has blossomed and become the “go to” source of PD-related information, programming and counselling for all of Southwest Florida (and beyond). When a “Sun Coast” resident receives that first PD diagnosis, they are almost always advised to contact NCF for guidance and support along this new, challenging journey.
The heart of NCF is the remarkable group of Care Advisors who interact every day with patients and caregivers. These are the folks who are on the front line of the PD battlefield, striving to support the PD community so that no one feels that they are making the journey alone. Led by a brilliant and driven Executive Director and a Board of Directors who are deeply involved in fulfilling NCF’s mission of improving the quality of life of people with Parkinson’s and their caregivers, NCF accomplishes its goals with a staff of only 7 dedicated people and a large group of volunteers.
I must mention specifically one outstanding annual event. In 2020, NCF’s annual Expo attracted more than 1,400 attendees eager to hear the latest about PD research, medications and other aspects of PD patient support. Between presentations by distinguished speakers, attendees are free to wander around the corridors, where representatives from drug companies, hospitals, makers of assistive devices, counsellors, etc. are happy to answer questions. I want to note that NCF’s expenses are funded from only two sources – donations and, to a much lesser extent, grants (no government support).
So, why am I telling you about NCF, other than to “toot our horn” to a wider audience than usual? Because I believe that the NCF model could be replicated in many locations in the US and internationally. I believe that an organization like NCF can be created wherever there is a critical mass of motivated PD patients and caregivers who are yearning to expand their treatment horizons.
Admittedly, NCF has grown because of its rather unique demography. Sarasota has a much higher than usual percentage of senior citizens. That means higher than expected counts of PD patients, many of whom live at a distance from family and need support. NCF has been blessed with financial support from very generous “angel investors” as well as receiving thousands of contributions from others whose lives have been impacted by PD.
Sorry, I went way over my allotted space. April is PD Awareness Month, and I feel strongly that my PD “sisters and brothers” should be aware of what can be accomplished.
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