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Have you been able to develop a Parkinson’s community for yourself? If so, how?
One of the greatest challenges of dealing with a chronic illness is getting others to understand what you’re going through. For this reason, finding a community that understands can be really helpful in building trust and camaraderie. Some people find this community at Rocky Steady Boxing. Others look to virtual chats to create friendships.
Have you been able to develop a Parkinson’s community for yourself? If so, how?
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22 Replies
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Started by wishing to take a PD book from my library. Their offerings were 3 and old. Spoke with Adult Services; during 2022-23, I suggested along with a librarian, we ordered about 20 pertinent/timely books which they allowed me to read first. Meanwhile, I arranged for a display table for Parkinson’s Awareness Month, April, 2023 which was visited by many, along with our local Visiting Nurses who got interested. Result? Our 1st support group meets May 31st!! Yes, it was a busy year, but I achieved a goal and have made new friends. Try it. Barbara
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Woohoo! Go, Barbara! I’d love to hear how it goes. Do you know if you’ll be discussing specific topics or if it’s just a general meet and greet?
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I live in a small community and am only 3 yrs into my Parkinson’s journey. But word of my situation got out and two people I already know reached out to tell me they also have PD.. I e-mail or phone them periodically to touch base and they do the same. Right now that is all I need as far as local ‘kindred spirit’ support. I also enjoy this forum and the topics it broaches (such as this one!)
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Margaret, I’m someone who benefits from just a small community, too. I don’t have Parkinson’s but I do have PTSD. And sometimes it’s really helpful to talk about it with people who truly get it. I’m glad you’ve been able to find that in the Parkinson’s world!
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No I have not. I can’t find people who still work full time and have a positive outlook. It’s also difficult to find community that meets in the evenings, and any Parkinson’s programs are always during the work day. Very frustrating.
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Joanna, I’m sorry to hear as much. It seems to me that I’ve heard about a group or two that meets later in the evening. Which time zone are you in? I’ll try to keep my eyes peeled for something that might work.
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When I started with my doctor after my diagnosis, she recommended I engage in an exercise program and gave me several suggestions. One was Pedaling for Parkinson’s held at the YMCA. I joined it and after a while I got to know some of the other participants. Turns out we all went to the same doctor. Eventually a support group was started that is held monthly at a site in our town. They provide all kinds of programs with information that is important to those with Parkinson’s and to their caregivers. We’ve met more people and made more friends to expand our community. It’s been invaluable to all of us.
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Joanna, I’m so sorry that you haven’t been able to find any support yet. May I ask where you live?
I have a couple of suggestions from when I was still working (I’m 59 and have had young-onset Parkinson’s for 26+ years. I was forced to stop working for pay in 2004 when I was 40, but I’ve had a very rewarding volunteer “career” as a Parkinson’s advocate since then.).
* On facebook, you can join the StrongHer with Parkinson’s group. It’s just for women with PD, and I’d say most are still working. I have found that group to be very informed and supportive.
*if you go to the Parkinson’s Foundation website (parkinson.org/your-area), you can check to see whether they have any evening or weekend support groups in your city.
* If the Parkinson’s Foundation doesn’t have any groups where you live, try the Amerian Parkinson’s Disease Association (apdaparkinson.org).
* If neither of those organizations have existing groups, you could follow in Barbara’s footsteps and start your own group. Both Parkinsons’s Foundation and American Parkinson’s Disease Association have lots of free materials for starting a group.
* You can let your doctor know that you are willing to meet with other PD patients in your age group, if she or he has any. By giving your physician written permission to allow other Parkies to contact you, you avoid HIPAA (Health Insurance Portability and Accountability Act) privacy concerns.
* Check your doctor’s office for flyers about upcoming events, such as deep-brain stimulation seminars. Even if you aren’t interested in the topic, it’s a great way to meet other people.I have found support groups to be absolutely essential for coping with this disease, and that goes double for Paul, my husband and care partner of 35 years.
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Thank you so much for these recommendations, Jackie.
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Jackie I’m 58, was diagnosed in 2021, but have been living with symptoms since 2016. I live life. I don’t focus on Parkinson’s. I’ve adapted where necessary, but it does not dominate my thoughts or my life, and I refuse to let it. I fully believe that’s why there’s been minimal progression. Dopamine is the reward center of our brain. I choose to feed that center with positivity. It’s hard to find that in a group. Also, I couldn’t find that group you mentioned.
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I have been most fortunate to have discovered two Rock Steady Boxing groups within easy reach of me. Over the last three years, I have come to appreciate the genuine bonding and companionship they afford. In these groups, we exercise hard, laugh loudly, and challenge mightily the progression of PD! We engage with each other easily, knowing that no explanation is necessary for whatever PD symptoms that might reveal themselves. Furthermore, we have discovered that we are defined by a lot more than people with Parkinson’s. We believe that we still have much to give. Our Rock Steady Boxers sell chicken dinners for a local church and service organization, landscape yards for an affordable housing group, and organize social lunches and picnics. We sail, deliver flowers, farm, adopt dogs, bartend, and so much more. We are not just “Living With Parkinson’s.” We LIVE!! With Parkinson’s. I have found a wonderful community!
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I was really encouraged by a recent conversation I had with Mark Milow where he described intentionally seeking community using social media. It’s certainly not the same as meeting with others face-to-face, but it’s amazing how connected you can come become to others around the world through a phone or computer. This forum community is another example of that!
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I actually feel more alone ! I don’t have many real friends and the few that we as a couple are in different phases of life! Grandparents ! Empty nesting ! We live quite close to a several large hospital systems!
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Sharann, I’m sorry to hear as much. Are you interested in attempting to build or join a community? Or do you value your alone time?
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I started a zoom program right after the beginning of the pandemic for women with Parkinson’s called Sunday Mornings with Twitchy Woman. We meet about twice a month on Sundays at 1:00 PM ET, 10:00 AM PT. Find out more at on my website Twitchy Woman. All programs are free and open to women with PD. We also have a private Facebook group called Twitchy Women.
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Thanks for sharing, Sharon. I’m always happy to see new communities popping up.
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Joanna, here is the link to the STRONGHER group, https://www.facebook.com/groups/536168113386842
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I think that we are lucky as we have a very active and supportive community of People With Parkinson’s and their carers here on the Sunshine Coast in Queensland. Our state organisation, Parkinson’s Queensland has a number of support groups that meet, usually monthly. We also have some local Nurse Navigators and a variety of therapy groups (Speech and Physio/exercise) that all interact and get actively involved. As the carer for my wife it really helps and encourages us when we have “Bad PD days” and we both know that there are others around us who can help. Even meeting up with a couple of other carers for a coffee and a “vent” at Parkinson’s Disease is a “support” mechanism. I hope those of you that don’t have groups already can find some ideas or avenues to find some support.
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Mary Beth,
I live in Sedona Arizona. I just met for weekly lunch with my pal Tom. He is having some difficulty with his new Medication. My other friend Dan we meet for breakfast Fridays he has different medical issues that he deals with in a positive way. They are both great pals. It gives me perspective to watch them. Great topic! Blessings, Mike
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Mike, it sounds like you’re doing a good job of surrounding yourself with supportive people. But I’m sorry for your struggles. Good to hear from you!!
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Both of my fellow-travelers on the PD train have reached their final destination. I admire them both; neither surrendered to the disease; they went down fighting and I intend to do he same.
My support group consists of my very understanding wife who keeps me out of trouble and our neighbors and friends at church, who are always willing to lend a hand when we need help.
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For more than 5 years, I have been experiencing the challenges of the Parkinson’s world as a caretaker. Additionally, I work for a company that uses artificial intelligence to develop applications in the Parkinson’s field, particularly focusing on digital therapeutics. We recently received approval in the USA for our application named “Parky,” which enables self-tracking for Parkinson’s patients in collaboration with Apple. Our achievement was even featured in Parkinson’s News Today.
As a caretaker, I have found a way to turn my work in this field into an advantage, and I am creating content to help overcome the difficulties faced by people with Parkinson’s in their daily lives. I reach out to individuals who are going through similar experiences, conduct interviews with them, and feature their stories in my blog. I hope that by reading these contents, you might find something relatable and helpful.
If you are interested in learning more or connecting with our community, you can find us on LinkedIn (https://www.linkedin.com/company/4parkinsons/), Instagram (https://www.instagram.com/4parkinsons/), and Facebook (https://www.facebook.com/4Parkinsons?mibextid=LQQJ4d). Together, we can support each other in navigating the challenges of Parkinson’s disease, Hande
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