Dawn of a new Decade

When we get to New Year’s Eve we become nostalgic, and usually reflect on the year just passed. This past New Year’s Eve added the dimension of a decade of time and the reflection grew deeper as you pondered the ten year time span. Just think about the events. Probably the most indelible is the terrorist attacks of 2001. Do you recall “hanging chads?”
We were reminded that space travel is anything but ordinary when the Columbia disintegrated before our eyes. We were introduced to Wikipedia, youtube, Twitter, Facebook, blogs, Blackberries, Ipod, and HDTV. Of course we had endings as well. Pluto lost its status as a planet. Harry Potter had his final book, the Concorde’s final flight, ENRON, and Polaroid. We lost Ronald Reagan, Pope John Paul II, Bob Hope, Michael Jackson, Roone Arlidge, Ted Williams, Peter Jennings, and Rosa Parks.

It was a decade when Parkinson’s Disease (PD) came to the forefront when the stereotypical image that it is a disease of the elderly, was shattered with the announcement by 34 year old Michael J Fox that he has Parkinson’s.

My world changed as well. With my diagnosis of Early Onset Parkinson’s Disease in 2004, I began a dual life. By day, I remain the mild mannered self-storage executive that I have been since 1991. However, by night I turn into a crusader, an advocate for those, like me, with Parkinson’s Disease.

This letter is about youth, hope, vision and Parkinson’s Disease. When I write the decade review for the 2020 newsletter, let us hope the “endings” include the disease known as Parkinson’s.

Mike’s Story

Mike Justak- ” A cup of coffee?”

When diagnosed in 2004 my first impression was relief. After all, I was expecting worse news- something fatal. I didn’t know what Parkinson’s was or its impact. But still feeling “ashamed” I went into denial. It was a year before I could start telling people my “secret”. On Easter Sunday 2006, I was offered “insight”, an answer to the question of,”Why me?” That insight led to the creation of a nonprofit to benefit Parkinson’s Disease. What should I call It? Well, It strives to create new partners or partnerships to help those with PD. “Parnterships for Parkinson’s”, or PFP, Inc. was born.

In 2008, while attending a conference on Early Onset PD, I met David Zid. David is a crusader as well. His book “Delay the Disease” offers an step by step guide to exercises that have shown to slow the progression of the disease. PFP was a proud sponsor of David’s trip and symposium to the Twin Cities. Is David effective? During his interactive talk, a participant using techniques demonstrated by David, rose unassited from a chair for the first time in months.

In 2009, the redesign of the website,offering video information on Parkinson’s, was launched.The blog also continues to experience good traffic counts. Yet I fall short of my dream. My mission is to help those-first hand.

Parkinson’s is a movement disorder. Movement. Movement therapies. An area of opportunity. The Wii game system has actually shown to be beneficial to Parkinson’s patients. It’s benefits are two-fold. As a “social” gaming system it also helps alliviate the depression that is commonplace to Parkinson’s.

Depression and isolation. Patients are urged to be part of various support groups. Participation can be sidelined by inability to drive, weather, or just the general health of the participant. Enabling various support groups with the capeability to conduct video conferencing of support group meetings can open vistas deemed closed.

And of course-research into a cure. This three sided approach is my vision for use of funds raised by PFP in 2010.

So, how ‘ bout that coffee. My favorite is the seasonal offering of local provider Caribou Coffee, Ho Ho Mocha. Ok, I know the name is sillly, but it adds some fun to the ‘ol cup of Joe. Anyway, the medium is $3.10. You’re joining me—right? So that brings it to $6.20 plus tax. You’re the courteous type so you offer to buy—Thanks! That was mighty nice of you. Add a tip and you’re at seven bucks.

Do this for me. Click the link:

www.MikesWalkforPD.com

Click “donate” and put the $7 to a better use. If you can, buy a few rounds. Or better yet, buy for the “house” and go for a sponsor role.

So I don’t get my HO HO Mocha. I’ll be OK-I’ll just brew a cup instead, but your simple gesture, a cup of coffee can IMPACT the lives of those with Parkinson’s Disease.

You’ll find your next cup of coffee never tasted sooooo good,

A Story about Hope and Support
Importance of Support

The lives of Jenny Davis, 42, and Tina Lagonegro, 37, resemble the lives of so many other busy, involved moms. They lead their “team” each day, raising them to be responsible, strong individuals while juggling the daily responsibilities faced by any family. Between the two families, there are 10 children ranging in age from three years to age 19. So go the normal lives of these two families.

Davis and Lagonegro, along with their husbands, face all the same joys and challenges as so many other families. Their “normal” lives have not disappeared, but Parkinson’s disease forces them to adjust constantly. They have both come to accept a “new normal”.

Living with YOPD requires careful management of symptoms, treatments and the effects this has on families, lives and careers. Finding the right support mechanism to assist with this is critical.

“I didn’t need anyone telling me how awful it was that I was dealing with this disease. What I needed was to hear from others who were getting through day-to-day life,” says Davis.

Sharing stories of health insurance struggles, drug side-effects, solutions, dealing with troublesome symptoms and developing positive friendships are all key to maintaining a quality of life beyond the disease.

“For me a support group isn’t just a group that gathers once a month to talk about having the disease, it’s a group of people who support each other in living life.”
For Davis and Lagonegro, balancing daily life and staying busy keep them moving forward-even if sometimes that movement is not as smooth as it was in the past. Focusing on their families and their faith while acknowledging the limitations that the disease imposes, helps both of them take each day as it comes.

Both women agree: “Life is very different now than it once was, but it is a good life and we appreciate every moment we have.”

Michigan Dynamic Duo

When Bay City’s Joan Szczepanski started a support group four years ago for younger people with Parkinson’s disease, she was seeking help for herself.
Diagnosed with the movement disorder at age 51, she didn’t fit in with other Parkinson’s groups whose members are usually older, she said. “You can only read so much, but you don’t really know until you see it first-hand. We formed on prayer and hope and it worked out.”

Leaders at the Michigan Parkinson’s Foundation asked Szczepanski, now 56, to start the group to meet needs such as hers. As a facilitator, she brings in speakers and coordinates sessions as a volunteer with educational assistance from the foundation. “It is more than I thought it would be and I can’t believe the response we get from doctors who speak to the group and send patients to us,” she said. “We are a family…these are people who really understand.” Carolyn Weaver of Freeland, another longtime group member, now helps Szczepanski lead meetings and provides great encouragement.

Diagnosed 10 years ago, Weaver deals with constant muscle “freezing” that makes her feel her feet are glued to the ground. But she continues to work as a marketing representative for Berner Medical Systems, Lakeshore Diagnostic Ultrasound and RediMed, traveling to meet clients and conduct training sessions. “I can drive, but with Parkinson’s, it depends on the day. You are either on or really off,” she said. “So I get rides and help from co-workers. I really want to continue working and stay active. I want to let people know there is life after Parkinson’s.” Weaver, now 58, takes medication every three hours to control symptoms — as does Szczepanski, who deals with muscle tremors and loss of sleep. The disease affects every person differently, making research a challenge. But Weaver is helping to improve the search for a cure. She was one of 25 people chosen last year by the national Parkinson’s Disease Foundation to take part in an institute dedicated to educating people about the need for more clinical research. “Less than 1 percent of Parkinson’s patients participate (in clinical research). We need more data to move forward (toward a cure),” Weaver said. She makes presentations about clinical research trials to doctors and patient groups and will help lead a second institute this fall. She recently took part in a study at the University of Michigan on gait disorders such as the freezing that stops her walking.
They hope to continue to grow the support group and have formed a second group for care partners, such as spouses or other family members. Both women get great support from their husbands, they said. They even have plans to bring a dance instructor to group meetings because dancing can help with controlling movement, Szczepanski said.

“It’s a wonderful group of people and it’s encouraging,” said Weaver. “We have a policy to stay positive.”

Mike’s Walk for Parkinson’s Disease

This April 24, in New York City’s Central Park, Mike Justak will join tens of thousands who will “walk” to benefit Parkinson’s Disease. The New York Walk is the largest gathering of its kind in the US Parkinson’s community.

Parkinson’s Disease is a neurological movement disorder for which there is no cure. Over one million Americans currently have Parkinson’s. Nearly one in five of those diagnsed are under the age of fifty.

Hey,
Don’t forget the coffee.
Here’s how to make it a “Grande”.
Forward this email to someone you know. Ask them to buy us both a cup of coffee.
See if your employer has gift matches. You may be able to make that cup a double!
Lastly think about how you might Introduce me to someone who might have an interest in sponsoring my team.

A few clicks. Take that step. Walk with me.

Sincerely yours,
Mike, Karen, and Family
Mike’s Walk for PD supports the misson of PFP, Inc.
PFP, Inc. is an IRS approved 501(c)3 Minnesota Nonprofit Public Charity whose mission is to create awareness, educate the public, and raise funds to improve the lives of those living with Parkinson’s Disease.

Your gift to PFP, Inc. may qualify for tax preferences. Check with your tax advisor.

FEIN: 20-8245231

This entry was posted on January 17, 2010 at 9:47 pm and is filed under Parkinson's Disease Categories, Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response or trackback from your own site.

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