All posts by parkinsonscomfortquilts

2015 Nonprofit of the Year!

VQFWe are thrilled and honored to announce that the Vermont Quilt Festival has named the Parkinson’s Comfort Project as its 2015 Nonprofit of the Year!

“I am grateful for the Vermont Quilt Festival’s recognition of the Parkinson’s Comfort Project and our Comfort Quilt program,” founder Sonja Hakala said. “It is a great credit to all of the incredible quilters who have so generously donated their time and talent to us in the form of these wonderful quilts.”

Added Executive Director Jesse Davis, “This honor is also a deep recognition of Parkinson’s disease and the tremendous impact the Comfort Quilts have had upon those who have received them. The response of the Parkinson’s community to our efforts to distribute these amazing quilts has been joyous.”

The Vermont Quilt Festival is the oldest and one of the largest quilt festivals in New England drawing tens of thousands of visitors from across New England, northeastern New York and Québec up to Montréal.

The Vermont Quilt Festival takes place June 26th-28th, 2015 at the Champlain Valley Expo in Essex Junction, Vermont. The Parkinson’s Comfort Project will have an information booth where we will be raising awareness of Parkinson’s disease and our Comfort Quilt program.

We hope to see you at the Vermont Quilt Festival!

Be well…Jesse

Encouraging Research Trial

Researchers in Europe have just published a paper about a clinical trial they conducted to see if a treatment which does not involve carbidopa/levodopa has any efficacy. The result of their trial does offer hope.

Instead of seeking to stimulate the production of dopamine in the brain via levodopa, the researchers sought to protect the neurons which produce dopamine to begin with. Using a platelet-derived growth factor (PDGF) the researchers found in both animals with PD symptoms and the human clinical trial that dopamine levels in the brain stayed stable, and sometimes actually increased. The human trial used PET scanning to track the dopamine production in both the trial subjects and placebo group.

What’s the next step? The researchers want to learn why exactly this treatment appears to be successful. According to lead researcher Gesine Paul, “If we are to fully take advantage of the growth factor’s restorative properties we now need to better understand the underlying molecular processes.” There also need to be more clinical trials and studies with larger sample sizes than the twelve person trial whose results are the basis for Paul’s team’s paper.

This is indeed exciting news and gives reason for optimism. There is still much research to be done and everyone will be eagerly waiting for updates. You can read more about the study via our friends at the European Parkinson’s Disease Association.

Be well…Jesse

Making Parkinson’s Reportable

How many people in the United States have Parkinson’s? Ask one source and they will tell you 500,000. Another will say 1.5 million. Still others say 1 million. Why such a variance? Because the Parkinson’s census is not tracked.

Most illnesses in the United States are not “reportable” to the U.S. government for the purposes of tracking and identifying trends. Why is this a problem? It makes us lose vital information for research and better identification of causes and risks for the development of a myriad of conditions and illnesses such as Parkinson’s.

There are two pieces of legislation before the current session of Congress which would establish such databases with the Centers for Disease Control and Prevention (CDC). By making Parkinson’s and other neurological conditions reportable by healthcare providers, we would have a more accurate count of the prevalence of this disease as well as geographic breakdown and common denominators of the Parkinson’s census.

The Parkinson’s Action Network is working with partners who advocate for other neurological conditions on Capitol Hill for the passage of the proposed legislation. The director of the Parkinson’s Action Network and National Multiple Sclerosis Society co-wrote an op-ed in The Hill urging lawmakers to vote in favor of passage and President Obama’s signature into law.

You can urge your representatives to support this important legislation by calling, writing or emailing their offices. If you would like help contacting your legislators, the Parkinson’s Comfort Project is happy to help.

Be well…Jesse

Pausing to Remember

Marcia Luey Hakala
Marcia Luey Hakala

Today is the fourth anniversary of the passing of my grandmother, Marcia Luey Hakala due to complications of Parkinson’s Disease. Grandma brought eight children into the world and was the proud grandmother of eight grandchildren. The nursing home where she resided prior to her passing always knew what was happening with Marcia’s kids and grandkids because she loved to brag on us.

Marcia is the reason the Parkinson’s Comfort Project got started. For the last three years of Marcia’s life her daughter, our founder Sonja Hakala, made quilts for her. As her Parkinson’s progressed, it became harder and harder for Marcia to move in her bed under the weight of the bed quilts. Her last quilt request was for a smaller one. Sonja made her mother a lap quilt, about two feet by three feet, that became the forerunner of the Parkinson’s Comfort Quilts we now distribute.

Sunflowers in my wife's garden.
Sunflowers in my wife’s garden.

My grandmother loved flowers almost as much as she loved her children and grandchildren. One of her favorites were sunflowers. I suppose it is fitting that she passed during the time they are in bloom. My wife makes sure she plants sunflowers every year for me so that Grandma is always close by.

I am thankful for the years I had with my grandmother and for her spirit which continues on for me through our efforts here at the Parkinson’s Comfort Project.

Rest in peace Grandma, I love you!

Be well…Jesse

Robin Williams

Ed. note — This piece was written and submitted to local media and the Diane Rehm Show by Anne and Paul Bonaparte-Krogh. We are grateful for their permission to repost it.

The media was doing ok with Robin Williams’ chronic clinical depression. Everyone has been providing the suicide hotline number and repeating the truth that depression can get better and life can feel good again. Now, news of his Parkinson’s.

A similar media message needs to be loud and clear to people diagnosed or who will be diagnosed with PD: it’s presently true that you won’t recover from PD. But, you WILL still find things to enjoy in life. All that makes life worth living is not behind you.

We know. Paul was diagnosed with PD in 2009. The less well-know cognitive impairments that can come with PD forced him to stop working at the end of 2013. His mother had advanced PD and we were not naive about the implications. Like any other major life blow, there are days you shoulder this burden, straighten with determination and go forward, and days, especially as the going gets tougher, when it feels hard: hard to the person with the PD, and hard to their spouse, children and network of support. We know our road will get more difficult yet.

We hazard the guess that few people have the relentlessly upbeat public attitude of Michael J. Fox, who is an admired inspiration and fierce advocate. But even those without his resources, his disposition, and without his form of PD (different for everyone) should know that PD is not the end to everything you love, everything that gives you pleasure.

We understand clinical depression and thoughts of suicide as Anne (and, consequently, her family and friends), went through both. Robin Williams brought so much light to our lives. It rocks and deeply saddens us that he could no longer see light. If it was the PD diagnosis that was the straw that broke the camel’s back for him, don’t let his mindset determine yours. With a PD diagnosis and progression, with depression, there ARE still going be glad times, satisfactions, and laughter. There are resources to tap for PD as well as depression.Try watching some old Mork and Mindy episodes or The Birdcage; these have brightened our days.

Tough things happen to all too many, all too often in life. Take them one day at a time.

Anne and Paul Bonaparte-Krogh
Concord, NH

Taking Time for Oneself

I was reminded of something very important today thanks to Janet Edmunson’s Weekly Affirmation email: “I make sure to take time for myself, no matter what.”

How many of us say we’ll take time off sometime in the future? I know I do. The always present to do list, spending time with family and taking care of things around the house seem to always take every waking minute. Add caring for a loved one with Parkinson’s to this mix and the demands on our time increase exponentially. How can you possibly take time for yourself when you are giving care?

Yet, taking time for yourself is probably the best way to take care of yourself. You need not take days or weeks, even a few hours helps. Taking time away from caregiving allows you to rejuvenate your energy, take care of your own health and help guard against burnout. You get a chance to step back, breathe and flush out negative energy and feelings. In short, taking time for yourself can make you a better caregiver.

My wife is a nurse in an intensive care unit (ICU) at one of the local hospitals in our area. Being an ICU nurse is incredibly demanding physically, mentally and emotionally. Like caring for a loved one, she has good days at the ICU and bad ones. When she has some time off, I like to make sure I give her time for herself. Doing so allows her to be a better nurse for her patients when she goes back to work.

I know all of this sounds all well and good, but is difficult to accomplish when you feel such depth of responsibility for your loved one with Parkinson’s and especially so when there are few, if any, options for respite. Figuring out such options will be a post for another time.

In the meantime, take some time for yourself. I’ll work on doing the same. I’m sure it will do all of us a lot of good.

Be well…Jesse

Successful Failure

My training for the Leaf Peeper Half Marathon in Waterbury, VT has moved from its foundation stage to running measured mileage. Each week I have four runs of different distances, the final run being the longest. Last week my final run went well for the most part — I would call it a successful failure.

What is a successful failure? Definitions may vary somewhat, but I would submit that it is an event where a goal was reached or mostly reached, albeit not in the way it was planned or expected. For example, my long run last week was a successful failure because I accomplished the mileage but had to twice walk a short distance instead of running the whole thing.

apollo-13-patch
Apollo 13 was considered a “successful failure” because the astronauts returned safely but did not land on the Moon.

Parkinson’s is of course full of ups and downs. Things are tried and don’t work, treatments have to be altered in response to its progression and there are times of deep emotional trial for both caregivers and those with the disease. The question for all of us, affected by Parkinson’s or not, is one of perspective (something I’m still learning!).

The questions can go along these lines: Did I accomplish the goal? If accomplished, was it by the original plan? If not accomplished, what can I learn from it? What caused the goal not to be accomplished or, if the goal was accomplished via something other than the original plan, what needs to be changed?

I think it is generally the case that we learn more from something that doesn’t work than when something does. My hope for all of us is that our perspective allows us to learn from failure rather than become mired in the failure itself. It is certainly something I have to keep mindful of. This is one place where being supportive of each other can mean all the difference.

Be well…Jesse

A Research Setback

At the end of this past January, the scientific journal Nature published a paper submitted by researchers in Japan and the U.S. about a revolutionary way of creating stem cells from adult cells in a process that would take less time than the process Dr. Yamanaka developed for which he won the Nobel Prize. Sadly, this research has turned out to be too good to be true.

The researcher in Japan, Haruko Obokata, has been accused of fabricating or misrepresenting her research by the institute where she conducted it. While denying misconduct, she has conceded there are errors in the research and agreed to retract the study along with its co-authors. Nature has also published a retraction and is reexamining its procedures for accepting papers to better ensure this does not happen again.

This is heartbreaking news for us in the Parkinson’s community since stem cells are being investigated as a method of treating the disease. We can only hope that the next discovery about stem cells will be based upon sound, ethical research and represent progress in the treatment and eventual cure of Parkinson’s.

A couple articles for more information:
Nature
Washington Post

Be well…Jesse

Demographics

According to a Washington Post article citing U.S. Census data, the three states with the highest median age are Vermont, New Hampshire and Maine. This probably doesn’t come as a great surprise to many of us living here, but it does raise some stark issues.

Primary among these issues is the question of how to provide care as our population ages and there are fewer in the younger generations to provide care? This issue is even more acute considering we are quite rural in our makeup. There are only a few hospitals in the twin states with the resources and staff to provide a full breadth of acute care (in regard to intensive care units) as well as specialists across the spectrum of care.

For Parkinson’s care, this issue is even more challenging. There are very few movement disorder specialists in Vermont and New Hampshire. Dartmouth-Hitchcock Medical Center has hired a third specialist to help meet the need. But beyond DHMC and Fletcher Allen, there are not a large number of options for such specialized expertise in Vermont and New Hampshire.

So how do we tackle this problem? There are no easy solutions, especially in light of the slow recovery from the 2008 economic collapse. Financial resources is one challenge, but for some doctors, our rural setting is a negative rather than an attraction. Beyond doctors, we also need more resources in terms of training for community health workers in clinics around the twin states.

The Parkinson’s Comfort Project wants to be a part of solving this challenge. The first step is learning the scope of the needs in Vermont and New Hampshire. You can tell us more by taking one of our surveys or by contacting us directly. We look forward to hearing from you!

Be well…Jesse

World Series

Davis WS trophiesI got to go to the World Series this past Sunday—sort of. Actually, I got to see the trophies the Boston Red Sox won in 2004, 2007 and 2013 at a fundraiser for a local assisted living community. Being an avid Sox fan, I naturally had to have my picture taken with the trophies. But there was on picture I was able to get that means the most: the 2004 World Series trophy.

Why that particular year’s trophy? Two reasons: 2004 was the year the Red Sox finally broke their “Curse of the Bambino” in winning their first championship since selling Babe Ruth to the Yankees in 1918 and because my grandfather never got to see it happen.

As I’ve related before, my grandfather, like all good New England born and bred boys, was a die hard Red Sox fan. He even tried to go to Florida one year as a young man to try out for the team in spring training, but had to come home before reaching his destination. Grampa loved baseball and the Red Sox, living with hope at the start of each season and heartbreak at the close calls and near-misses at the end of it.

The 2004 World Series Trophy
The 2004 World Series Trophy

When Keith Foulke fielded the grounder and tossed the batter out at first to win the World Series in 2004, the first thought in my mind was Grampa and how much I wished he was still alive to see it happen. He passed due to Parkinson’s in August 2002, barely two years before the Sox won it all. While the thought of he and Ted Williams celebrating the championship at the big baseball diamond in the sky brought some consolation, I would have loved to have been able to call him at home on Cape Cod and celebrate.

May treasured memories of friends and family who have departed live on in, and through us.

Go Red Sox…

Be well…Jesse