This topic contains 5 replies, has 1 voice, and was last updated by Gary Rafaloff 3 months, 2 weeks ago.
February 9, 2016 at 2:11 am #1248
I think politically we should exert pressure on the insurance industry to recognize PD as a “full body condition” as Jon calls it in his remarkable book Brain Storms and to cover the kinds of treatment that actually benefit us. If we could get coverage for alternative therapies: massage therapy, tai chi, voice control, etc. that anecdotally we know work, it would make our lives more bearable, and I have no doubt the concomitant stress reduction would further allay the symptoms of the disease.
Having just experienced my first fall, I find myself wanting a workshop focusing on how to fall safely, if such a technique can be practiced at this osteoporotic age.February 9, 2016 at 2:20 am #1251
For those of you who don’t know me, I am a cofounder of a new center in CLeveland OH called InMotion. (www.beinmotion.org). InMotion is a diverse nonprofit center that provides those affected by PD and other movement disorders a place to turn for physical, emotional and spiritual support, empowering them to take charge of their well-being. It offers a variety of exercise classes ranging from cycling to boxing that help clients strengthen their bodies. We have Reiki and massage, as well as art and music therapy to soothe the mind and spirit. This is complemented by our Compassionate Peers program and support groups for people living with Parkinson’s and their care partners. We also host expert presentations to help bring the latest movement disorder research and news to light.
An MJFF blog recently said: “InMotion is setting a precedent for self-care through education, exercise and healing arts.” And all of these services are provided at our center, under one roof, for free. As joy stated, since insurance companies do not recognize any of these services as therapeutic, they are not covered. So, if there is one issue that weighs heavily on my plate it is engaging third party payers to take a look at all of the grass-root community wellness efforts, like InMotion, and to take us seriously. Daylong wellness symposiums such as the victory summit are fabulous but at the end of the day, without a place to find the same services, most attendees will go back to doing nothing. The community that is growing at InMotion consists of young and old, fit and flabby, mobile and immobile….what defines us more than anything is that we are present and working together at InMotion. We have some clients in their 80’s who haven’t bothered to exercise in years….but because they feel safe, they show up. The ripple effect is remarkable… The spirit and the body are strengthened as a result. Such places could be in many more cities if insurance funding were available. And I think we all know just how big of a nut that will be to crack. But crack we must!!February 9, 2016 at 2:31 am #1253
I am all about Wellness Centres and attainment of best quality of life. The brick wall is the funds are not available to set the centres up. Karen has managed to get her’s going. We are still in the pilot stage,(www.parkingo.org) but continue to grow week by week and have outgrown our 3 satellite sites. So many PWP live with unmet needs! We have found a place to accommodate us, but we can’t get any funding from local health authorities and we don’t have a MJF person in our community to help out. Grants are scarce in Canada’s economy.
Yet we learn the most from each other, we do better when we engage with other Pwp, laugh, sing, dance, exercise, give each other emotional and spiritual support, education and have our life rafts full with support from the community we live in. Wellness Centres decrease the pressure on our caregivers and medical providers. Not to mention saving healthcare funds.
As Karen has already mentioned PwP need to be empowered to take charge of their own self care. It makes sense that the services are provided under one roof. You can look at other chronic diseases, i.e. arthritis, MS, spinal cord injuries and you will find their centres everywhere.
Our day long Victory Summits and education sessions are great introductions to living well but forgotten so quickly when there is no follow up.
I would rather see the money going into wellness treatments, not just education. We have a progressive disease which needs to be followed through its life cycle, yet on the way life can be fun if the services are there on a daily basis.February 9, 2016 at 2:46 am #1256
Kudos to you in Cleveland, Karen! What inspiring news to hear of your creation, InMotion, with wide-ranging PD services offered for free.
I know there’s a similar program in San Francisco, founded by my old PAN friend, Herb Heinz, which I just looked up: http://herbheinz.com/community.html
Minneapolis has a comprehensive PD Center, as well, I believe. And I’m sure you know about our Brooklyn Parkinsons Group in New York where Pam teaches MovementLab.
The institutions providing our health care are SLOWLY beginning to understand our daily need for movement and exercise, as are we. Hopefully, at this year’s WPC, we’ll find a way to showcase and catalog ALL THE COMPREHENSIVE PROGRAMS existing anywhere in the globe, with the goal of disseminating this information to all with PD who are unaware of these services in their own locales. I wonder if the Congress could set a goal of publishing a country-specific book with overall listing of all PD services in that country-not just Movement Disorder specialists-but a real bound book that will sit in every neurologist’s and Movement Disorder doctor’s office like the DSM. (Of course there would be the online version, too.)
FYI, in the US we have no primary PD umbrella organization to go to for listings and referrals, or info., especially if you are newly diagnosed. Instead, we tell someone who inquires about more info on PD, “OK, for excellent resources, newsletters, webinars and info. from our big organizations, you can look at the websites (to name just a few!!) of Parkinsons Disease Foundation (PDF.org), or National Parkinsons Foundation (Parkinsons.org),or American Parkinsons Disease Association (APDA.org), or the Michael J Fox Foundation (MichaelJFox.org), or Parkinsons Unity Walk (Unitywalk.org),or the Northwest Parkinsons Foundation(NWPF.ORG).”
And that’s not even touching the primary advocacy arm in the US (Parkinsons Action Network (Parkinsonsaction.org) or fantastic patient-driven info sites like PDPipeline.org. And obviously, there’s always the international WORLDPDCOALITION.ORG. Yes, we’re lucky to have so many sources of superb information, but our diminishing Executive Functions make it easy to feel overwhelmed, to give up searching for a dance class or support group, and walk away from the computer. Yes, there’s tons of redundancy and replication, but it’s the US where quantity and competition reign supreme, and in this case, ALL of these organizations do superb work for us.
But if we can perhaps try at the Congress to do an umbrella guide of ALL PD services per country, sub-divide them into categories like Info Newsletters; Research Trials; Exercise and Dance Classes; Webinars; Patient Tips for Daily Life; etc. and then do major Public Service outreach through Facebook, Twitter, etc., how useful might that prove to be??February 10, 2016 at 1:03 am #1272
In regards to the WPC, Becky Farley and I were hoping to have a planned session for the purpose of discussing how to get more centers funded, best practices etc etc. I made a pitch to Eli Pollard but I think the sessions are pretty much planned out. For those of you attending the WPC in Portland and have an interest in convening a “meeting of the minds” around the topic of community exercise/wellness centers, I would be happy to host a group as I have already reserved a rental home not far from the convention center.February 10, 2016 at 1:04 am #1273
That’s a great idea. As I mentioned to you in my message last week I am trying to get a local program going similar to your InMotion. Count me in, I would love to get together with everyone to hear what’s already been done and how we move forward.