This past weekend, I had the privilege of giving a presentation to over 130 people with Parkinson’s, their caregivers and allies in Laconia, NH. The Parkinson’s Comfort Project also distributed comfort quilts to patients during the exhibitor time. The impact of the day was tremendous.
One gentleman from Laconia was awestruck when his wife brought him to receive a quilt and being told quilters make these beautiful pieces to be given to Parkinson’s patients. “I have spent much of my time trying to help others in my community” he said, “I’ve never expected someone to make such a beautiful thing for me; especially someone who doesn’t know me.”
My presentation centered upon caregivers and patients retaking control over the disease by empowering themselves to be the leaders of their journey with Parkinson’s using their stories as the foundation of strength. One person with Parkinson’s and I had a conversation later about her own struggle to come to terms with this disease and how she has overcome its psychological impact.
These stories are just two examples from a day of meeting new friends, hearing powerful stories and receiving ideas for future presentations. I could not ask for a greater reception from the Parkinson’s community…Thank you!
Lost in the recent U.S. Government shutdown crisis was the effect it had on individual people in any number of ways. One of the many effects of continued budget cuts has been the slashing of medical research funding.
In an editorial in the Oct. 15th Boston Globe, Brigham & Women’s Hospital President Dr. Betsy Nabel pointed out that funding for the National Institutes of Health has been cut so drastically in recent years that it is actually having to turn away patients seeking to enter clinical trials.
What can be done to turn this chain of events around? Parkinson’s patients, their supporters and allies need to stand and advocate for the restoration of funding for biomedical research.
Here are some suggestions on how:
Write letters and call your Senators and Representatives
Start petitions to send to lawmakers
Write letters to the editor of your newspaper
Invite local media to Parkinson’s events
The more visibility we bring to the need for treatments and the vital role biomedical research plays in treatment development and our economy, the better chance we have of gaining the restoration of funding to the level it was before the budget cutting began.
There will always be debate about government budgets. We must work to make sure the policy makers setting the budgets remember the people their decisions affect.
When I begin to talk about the Parkinson’s Comfort Project with someone, they very often say “My spouse/parent/friend, etc. has (or had) Parkinson’s.”
Every time someone says this I begin to ask them about the experience of being with a friend or loved one as they coped with this disease. But their original statement keeps coming back to me and begs the question “why isn’t Parkinson’s headline news so often as Alzheimer’s, stroke and other neurological conditions?”
Before I get mail to the otherwise, it is true that Parkinson’s is beginning to receive more attention in the mass media and the public square. All of us in the Parkinson’s community can help make it even more public, whether it is talking to people in our community, writing letters to the editor or other opportunities to speak openly about it. Perhaps the greatest aid to overcoming the isolation of Parkinson’s is to talk about and educate others about PD.
Humor often goes a long way in helping break isolation as well as in telling each person’s story about PD. Some of the greatest jokes and moments of laughter I have had since beginning this project have come from people with Parkinson’s. Yes, it is a serious challenge, but the tremendous sense of humor of so many people with PD is even greater.
Keep laughing and telling your story; all of us supporting you will help tell the world about Parkinson’s and together we will show the world that Parkinson’s does not have us!
Last night the Parkinson’s Comfort Project visited the Brattleboro (VT) Parkinson’s Support Group. We enjoyed both a lively discussion and great humor with a wonderful group of people with Parkinson’s and their caregivers.
During my presentation to the group, I emphasized the need for patients and their caregivers to be the leaders of their treatment teams and offered some ideas on how to accomplish this. The power of telling one’s story in such a way that other people feel a desire to be a part of your experience was especially resonant as well as using the European Parkinson’s Disease Association’s Parkinson’s Well-Being Map (TM) as a journal and communication tool with members of the treatment team.
The best part of the evening in Brattleboro was when the group went around the room for everyone to update on how they were doing. Even with the challenges they face, every person with Parkinson’s in the room was positive and upbeat. Having such optimistic attitudes and mutual support running through the group was tremendously heartening and something which is sticking with me as I move through the rest of the week.
Many thanks to Tiea and her fellow support group members in Brattleboro for hosting the Parkinson’s Comfort Project; it was a wonderful experience!
The World Parkinson Congress for 2013 has concluded and Montréal has been a splendid host. If you haven’t been to this city, I heartily recommend it!
One of the most impressive things to come out of this conference has been the scientific community’s turn toward full integration of people with Parkinson’s, not just as test subjects but as partners in the search for a cure. The foundational need of a good quality of life living with Parkinson’s is becoming better acknowledged by researchers, something that is heartening and provides hope to patients.
The turn toward improving the quality in life while seeking a cure is a positive one, but all of us who are people with Parkinson’s and their caregivers need to continue advocating that our voice be heard in the midst of research, data collection and clinical trials. Working with treatment teams means giving direction for the care you the patient wish to receive and making sure your doctors are on the same page.
There is a lot for me to discern and learn from all the seminars and materials I have collected at the World Parkinson Congress and I will be sure to share what I learn with you.
In the meantime, stay strong and know there is a global community staring down Parkinson’s alongside us.
A quiz: what country has 1200 neurologists to serve a population of 1.2 billion people?
Dr. Maria Barretto of India described to us what the challenge of Parkinson’s Disease in her country is like. With no government funding and a culture having difficulty coming to grips with a disease which is not divine punishment, the odds are long.
Instead of looking at the walls built up to their task, Dr. Baretto and her handful-sized staff decided to charge straight in. Since access to specialized care for the majority of Indians is non-existent, India’s Parkinson’s Disease & Movement Disorder Society has turned to community health workers and begun a grassroots effort to raise awareness and help alleviate the symptoms of the disease. Ingenious solutions to problems of mobility such as using a rope attached to a wall to get out of bed and modifying a wheelchair to have a permanent table are just two of the many approaches they have developed.
The approach in India raises a question for us: could improvements in accessing care and assessing Parkinson’s symptoms be addressed through community nursing? This method of healthcare delivery used to be widespread in the Western world but has largely disappeared. Perhaps the time is ripe to bring it back, especially in our rural areas. India’s example is living proof that a lot can be accomplished with few resources; a lesson we in the West may do well to examine.
In the exhibition hall at the World Parkinson’s Congress there is a large section of posters presenting programs and research taking place around the world. Everything from treatment research to quality care investigations are presented by people dedicated to the Parkinson’s effort. I was surprised, and filled with hope, by the number of projects examining the needs of caregivers and alternative methods of delivering medical care.
One poster presented by the European Parkinson’s Disease Association is a method for communicating with the medical team by a Parkinson’s patient. It is called the Parkinson’s Well-Being Map (TM) and allows a patient to rate their symptoms prior to a appointment. It is simple to use and can either be printed out or used online.
The Parkinson’s Well-Being Map is a great tool for patients and I believe could be adapted for caregivers both in their own appointments as well as an additional perspective for the Parkinson patient’s medical team.
This is an example of the dedication around the world to supporting caregivers and people with Parkinson’s. There is hope here in Montréal. Together we can spread this hope to our corner of the globe in Vermont and New Hampshire!
(This post was intended for Oct. 1 but internet interruption prevented posting)
“Life is not about waiting on the storm passing. Life is about learning to dance in the rain.” -Quote on a block of the international Parkinson’s Quilt Project.
The word of the day today at the World Parkinson’s Congress? Team. This word has long ago become cliché, in sports and business especially. But a patient-centered team approach to caring for people with Parkinson’s is vital to maximizing the quality and dignity of life for patients.
Today we heard presentations from doctors as well as speech, physical and occupational therapists, all of whom emphasized the need for Parkinson’s patients to be the leader of their treatment and care team. The team isn’t limited to medical care; families, friends and communities are just as important, many times more so, to helping our loved ones fight Parkinson’s. This team is what empowers patient and speaker Peter Davison to say “I have Parkinson’s. Parkinson’s doesn’t have me.”
Only with a team centered around their treatment and care can people with Parkinson’s “dance in the rain.”
Whenever I do research or interview someone I repeat the mantra “Go in dumb; come out smart.”
In essence, “Go in dumb; come out smart” is a constant reminder to really listen by putting aside our perceptions and what we think we know. This will be my experience while I attend the World Parkinson’s Congress (WPC) in Montreal this week.
The one thing I do know going into the WPC is that I don’t know much. The wealth of knowledge and information being gathered together over these four days will be incredible and I know I will come out smarter than I went in.
I will be blogging at the end of each day of the World Parkinson’s Congress (Oct. 1-4) and sharing something new that makes me smarter about Parkinson’s and being a caregiver. What would you like me to keep my ears and eyes open for?