Tag Archives: Parkinson’s Comfort Project

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

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

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

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

Living Vows

As I mentioned in my last post (Why Run?), I am about to get married to the woman who has become the great blessing in my life. As we’ve prepared for our wedding, I have been reflecting on the vows we are about to make to each other and considering what it means for a lifetime.

The portion of our marriage ceremony where we are asked if we will take the other person “in sickness and in health” for as long as we shall live is perhaps most prescient to me. Why? Because I have seen this vow personified by the spouses who care for their wives and husbands with Parkinson’s. I have much to learn from you.

Who but a very small few of you could have known that the person you fell in love with would develop a condition which often robs so much? How do you navigate the innumerable challenges, frustrations and maddening moments? I am convinced it is due to the depth of the relationships which have had many years to nurture and build upon the solid foundations of friendship and love with which you entered your marriages.

I see it time and time again; a nearly boundless patience, loyalty and care for your loved ones. You, the spouses of the Parkinson’s community, personify the vow of taking each other “in sickness and in health.” Thank you for your example, your dedication and your care of your loved ones.

Be well…Jesse

Why Run?

As I have related in a past post or two, I have begun training for a half marathon which takes place this fall. My decision was a bit of a stretch considering I had never enjoyed running back when I was in high school. But attending a marathon last year got me thinking about trying something out of my comfort zone. So far I have be pleasantly surprised.

Why am I running now? It is both for myself and for others. Since I’m about to get married, I want to give my bride a healthier husband. There is a history of heart disease and cholesterol challenges in my family, so I want to literally outrun those issues as best as possible. I also run for those who can’t—everyone in the Parkinson’s community for whom the disease has robbed the ability to move about as they once have. I run for the memory of my grandparents who passed due to Parkinson’s. When I’m getting tired or cramped on a training run, their memory and doing something for a greater purpose keeps me going.

Why run at all when there are many other ways to exercise? Running certainly is a high impact activity—the knees, ankles and back can easily be injured not to mention safely navigating vehicle traffic. Yes, swimming is much better on the joints and gives a total workout, but the closes pool means getting in my car and paying for a membership. So I run. And run. And run some more.

Running has been meditative for me, especially as I navigate the pitfalls of planning a wedding and the challenges of the never ending to-do lists of life. Plus it gets me outside, a very rich bonus indeed!

I will keep you updated as my training continues and the date of the half marathon approaches. I hope some of you can make it this fall!

Be well…Jesse

Grampa’s Birthday

My grandfather in the Army in 1945
My grandfather in the Army in 1945

My grandfather’s birthday was this past Sunday. If not for the complications of Parkinson’s, he would have turned 88.

Like nearly everyone else, Grampa’s path to his diagnosis took time and more than a couple wrong turns. His motor symptoms started with a dragging foot and slowness in his arm on the same side. He insisted he was fine, just getting slower with age. As his symptoms progressed, the doctors examining him on Cape Cod raised concerns of a stroke or ALS, also known as “Lou Gehrig’s Disease”.

It wasn’t until he saw a specialist in Boston that his Parkinson’s was diagnosed. Unfortunately the disease, and Grampa’s other health challenges, progressed rapidly. He passed in 2002.

I have fond memories of Grampa, especially his love of country and baseball. Having been born, raised, lived and passed in Massachusetts, he was an avid Red Sox fan. I’m quite sure that is where I get my passion for the team. Like all loyal Sox fans, he would curse their ineptitude and ability to snatch defeat from the jaws of victory during the time of the ‘Curse of the Bambino’ and have his hope spring eternal on Opening Day of each new season.

When the Red Sox broke their curse in 2004, I remember wishing Grampa could have been here to see it. But as the tear of joy in their World Series victory came to my eye, I knew he was celebrating with Ted Williams and all the rest of the eternal Red Sox Nation somewhere. It must have been a heck of a party!

Grampa, here’s to you and all of our loved ones who have passed due to Parkinson’s. May their memories continue to give us joy in our lives.

Be well…Jesse

Teaching Moments

Last week, two members of our Speaker Bureau sat as a panel for a question and answer session with a class of nursing students at Keene State College. Their professor, Carolynn Ernst, had given the students a primer just prior to our panel’s visit.

Going into the presentation, none of us was quite sure what to expect. I remembered back to my college days when there could be awkward silences or dead moments where no one wanted to ask anything and the moderator wasn’t sure where to take the discussion. Our experience in Professor Ernst’s class was the exact opposite: engaging, well spoken and eager to learn more.

Our panel was made up of a caregiver and a person with Parkinson’s. They were candid with their answers to the students’ questions, telling them exactly what their experience of the Parkinson’s journey is like and providing a perspective that is not always available in the classroom.

If you are interested in being a part of our Speaker Bureau or in hosting a panel, please contact us. The members of the bureau are eager to tell their stories and share their insights.

The more we get the word out about Parkinson’s, the less isolating we can make it and the more empowered everyone in the community can be in supporting caregivers and people with this disease. Every step is one of progress!

Be well…Jesse