News & Events

Save the Date! Party for Parkinson’s 2017

Save the date Montgomery! Our annual Party for Parkinson’s fundraising event is Saturday, April 8 at 5:30 PM. Join us in casual attire at Wylnlakes Country Club for another great evening of live music, food, and beverage benefitting Parkinson’s Disease research and respite care programs for patients and caregivers in Central Alabama. We are thrilled to announce that Chevy 6 will again be performing at this can’t-miss event!

Tickets are $60 and include 2 drink tickets and BBQ dinner. Options to purchase tickets will be announced soon. Please visit our website or follow-us on FacebookTwitter, or Google+ for all the latest event details!

Apathy. I Don’t Feel Like Writing A Definition…

By PerkyParkie

Apathy. This word meant nothing to me until I was diagnosed with Parkinson’s disease; just letters, no significant meaning. When I look up apathy in my thesaurus, I see a list of synonyms, which share similar meaning. A few examples are: -Unimportance -Insignificance -Meaninglessness -Irrelevance -Unconcern -Disinterest -Lack of sympathy -Lack of interest -Lack of motivation […]

The post Apathy. I Don’t Feel Like Writing A Definition… appeared first on The Perky Parkie.

Source:: The Perky Parkie

      

Using Telemedicine to Diagnose and Treat Parkinson’s

Great insight on telemedicine from by Kat McCormick and the Michael J Fox Foundation.

Technology is central to how we communicate today. Smartphones, computers, tablets and all the versions in between give us instant access to a wealth of information and keep us constantly connected. This type of technology is now also being used to link patients to their doctors. Telemedicine — the delivery of healthcare services and information via electronic methods (two-way video, smartphones, etc.) — provides several benefits, including improved patient access to specialty care as well as reduced medical costs.

For the diagnosis and treatment of Parkinson’s disease (PD), it’s important that people see a movement disorder specialist — a neurologist specifically trained to treat PD. However, many people with Parkinson’s live in locations where specialists are limited and/or have difficulty traveling (due to symptoms like decreased mobility, imbalance or walking issues). Telemedicine is addressing some of these challenges by bringing doctors into patients’ homes or nearby clinics.

One program recently launched at the University of Rochester Medical Center (URMC) will offer free care to as many as 500 New Yorkers with Parkinson’s. Through a secure online teleconferencing system, participants in the Parkinson’s Disease Care, New York (PDCNY) program will receive “virtual house calls” from PD specialists. The doctors will develop coordinated plans for each patient, provide referalls to allied healthcare practitioners (such as physical, occupational or speech therapists) if necessary, and regularly reevaluate ongoing management.

Researchers are looking into using telemedicine in the treatment of Parkinson’s non-motor symptoms, too. One example is an MJFF-funded study that is evaluating the effectiveness of cognitive behavioral (“talk”) therapy delivered via telephone in the management of depression.

Patient satisfaction with telemedicine is high, and as researchers determine its full benefits and impact in Parkinson’s, it may become more widely available and utilized.

Read a letter sent by MJFF to the Texas Senate in support of telemedicine

Register for Fox Trial Finder to get involved in research studies from home.

Join Fox Insight: a web-based study gathering information about daily life with Parkinson’s

Source:: FoxFeed Blog

      

Party for Parkinsons 2016 Photo Recap

A huge THANK YOU to all our friends, family, sponsors, and supporters for making the 6th Annual Party for Parkinson’s our most successful yet. Your involvement and enthusiasm powers critical medical research and respite care programs that benefit area Parkinson’s patients and caregivers in a variety of direct and indirect ways. We could not do it without you and very much look forward to next year!

How Close Are We to a Blood Test for Parkinson’s?

By Maggie McGuire Kuhl

Last week Australia’s La Trobe University announced it had developed a blood test to detect Parkinson’s disease. While the team is making strides toward such a tool — and The Michael J. Fox Foundation is funding their further development — we’re not there quite yet.

Currently Parkinson’s disease is diagnosed through a clinical examination and elimination of other conditions that may cause similar symptoms (essential tremor, for example). An objective test for Parkinson’s could help us diagnose earlier and more confidently, which may teach us more about this disease and help develop treatments to stop or slow progression. (Watch our recent webinar on Parkinson’s diagnosis.)

The La Trobe researchers have shown in a small group of people (29 with Parkinson’s and nine control volunteers) that functionality of a certain subset of white blood cells is different in people with Parkinson’s. Measuring that functionality may be a way to diagnose the disease. MJFF and our partner the Shake It Up Australia Foundation are funding La Trobe to validate their findings and further refine their processes.

In the meantime, MJFF is leading other initiatives to diagnose Parkinson’s early and track its progression. The recently launched Systemic Synuclein Sampling Study (S4) measures the key Parkinson’s protein alpha-synuclein around the body, and the MJFF-led Alpha-synuclein Imaging Consortium is developing a tool to allow scientists to visualize alpha-synuclein in the brain.

Consider enrolling in a study toward measures of Parkinson’s disease. Visit www.foxtrialfinder.org to learn more.

Source:: FoxFeed Blog

      

Attend a Partners in Parkinson’s Event from Your Own Home

By Allyse Falce

On May 14, Partners in Parkinson’s will broadcast a full day of educational panels online, available to view on any computer, laptop, tablet or phone.

Partners in Parkinson’s is an educational initiative developed by The Michael J. Fox Foundation and the pharmaceutical company AbbVie to connect the Parkinson’s community with information and resources to optimize one’s care. These full-day events feature sessions with clinicians, researchers, allied health care professionals and people living with Parkinson’s and their loved ones.

To date, Partners in Parkinson’s has hosted 22 in-person events in major metropolitan areas across the United States. This marks the first online event, free and open to anyone with an Internet connection.

When:
Saturday, May 14
12 p.m. – 5:30 p.m. ET/9 a.m. – 2:30 p.m. PT
Register Now

Topics of discussion will include:

  • How Parkinson’s impacts everyone differently
  • How to tailor a care team that meets your specific needs
  • What to know, ask and expect from an appointment with a movement disorder specialist
  • What is happening in Parkinson’s disease research
  • How to build a healthy and active lifestyle

Viewers will have the opportunity to submit questions to our moderator and panelists throughout the day.

Not available on May 14? This virtual program will be available later this year to watch on-demand.

For more information, or to RSVP, visit partnersinparkinsons.org.

Source:: FoxFeed Blog

      

How Do You Define What It Means to Be a Caregiver?

By Nancy Ryerson

Just like Parkinson’s disease itself, Parkinson’s caregiving looks and feels different for everyone. Some loved ones don’t identify with the caregiver label at all. Others embrace it and find comfort in caregiver support groups. For some, caregiving is a full-time job. For others, it’s one part of a busy life.

 

We asked our Facebook community how they define being a caregiver. What descriptions resonate with you the most?

 

“I’m not a caregiver. My husband has PD. I am his wife.” Some people don’t connect with the caregiver label at all, preferring care partner or simply wife, husband, daughter, etc.

Caregivers are empathetic. Many caregivers in our community said that empathy is their most important skill when providing support. Rather than just feeling sympathy for a loved one, caregivers put themselves in their loved ones’ shoes and make choices from that point of view.

A caregiver wears many hats. Depending on your loved one’s needs, a day of caregiving may involve several trips by car, lots of cooking, medication measuring and more. Often, caregivers are also researchers, investigating the latest Parkinson’s treatments and studies.

A caregiver recognizes both the challenges and the reward of supporting a loved one. We often talk about the stress of caregiving, but the closeness and commitment of caregiving can be deeply meaningful, too. “Yes of course there is sadness and struggle and change, but also a lot of joy,” actress Kimberly Paisley-Williams said about her mother’s dementia diagnosis.

A caregiver is flexible and ready for change. Caregivers are experts at planning ahead, whether for the next week or next few years.

 

 

Source:: FoxFeed Blog

      

Is Deep Brain Stimulation Surgery Right for Me?

Over the next few months, guest blogger Susan Mollohan of Derry, New Hampshire will share her experience with deep brain stimulation surgery (DBS). In this first post, Susan discusses how she came to the decision to receive DBS. We’ll post updates on Susan’s story to the FoxFeed blog as her medical journey continues.

A year ago, my neurologist at the Lahey Clinic in Burlington, Massachusetts broached the topic of DBS. I was diagnosed with Parkinson’s in 2009 at the age of 55, and since that time my medications have become less effective. Three years ago I was taking one Sinemet (carbidopa-levodopa) pill a day, but now I’m up to five. Two hours after my last dose has passed, my meds are already wearing off.

I was interested in DBS, but wanted to learn more about the procedure and how it could help manage my symptoms. A surgery of this magnitude requires careful consideration, and before I made a decision, I needed to do my research.

In DBS, thin wires called electrodes are implanted into one or both sides of the brain in the areas that control movement. The wires are then connected to a small device (much like a pacemaker), which sends electrical signals through the wires into the brain. These signals stimulate a small brain region and block the signals that cause some Parkinson’s symptoms.

I sought the advice of a second neurologist from Massachusetts General Hospital, who said I was the perfect candidate for DBS because my medications have become less effective.

After these meetings, I began to seriously consider DBS. I learned that the ideal candidate is under 70 years old and is in good health. I fit both those criteria, but my decision was far from made.

I researched, read and gathered all the information I could. I spoke with others who had received the surgery and asked many questions. I discussed what I learned with my doctor to check that my information was accurate. My doctors also completed a formal evaluation and testing to determine if I was a proper candidate for the surgery, including an appointment with a neuropsychologist to ensure I was mentally and emotionally prepared for the procedure.

I’ve been asked how I know DBS is right for me, but the truth is, I don’t. When a person pays a dollar for a scratch ticket, they run the risk of losing that dollar or gaining thousands. This surgery is a risk, but I believe the pros outweigh the cons.

I’ve had Parkinson’s for seven years, and a lot of things have happened in that time. Seven years ago I was divorced, and now I’m happily remarried. Seven years ago I didn’t have four step grandchildren and two more on the way. I want to be able to hold those children and not feel restricted because of my Parkinson’s. Seven years ago I could hike, but today I choose not to because of my symptoms. These are the things that make surgery worth it: time with my family and time to do the things I love.

One thing’s for certain — my disease is progressing. By choosing DBS, good things might happen. If I do nothing at all, my medicines will continue to become less effective and my symptoms will get worse.

I’m currently awaiting official confirmation from my surgeon that I’m eligible for the procedure. Once I’m cleared, we can proceed with the surgery. I’m scared, but I’m ready. I’ve done my research, I’ve made my choice and I’m ready to buy my lotto ticket.

Stay tuned as we post more on Susan’s journey with DBS in the coming weeks.

about deep brain stimulation.

Source:: FoxFeed Blog

      

“We’re Grateful for Those Moments of Joy”: An Adult Daughter’s Memoir Chronicles the Ripple Effects of Diagnosis on Family

By Veronique Enos Kaefer

Where the Light Gets InLinda Williams left an indelible mark on The Michael J. Fox Foundation (MJFF) as our first major gifts fundraiser. While working at MJFF, Linda was diagnosed with primary progressive aphasia — a rare form of dementia. Her daughter, actress Kimberly Williams-Paisley, has published a memoir, “Where the Light Gets In,” chronicling her family’s journey with her mother’s disease. With a foreword by Michael J. Fox, Linda and Kimberly’s story is an intimate portrait of a family coping with the ripple effects of diagnosis.

Veronique Enos Kaefer, director of Advancement at MJFF, worked with Linda. She spoke with Kimberly about the toll diagnosis can take on families and, in particular, adult children of patients.

Veronique (MJFF): Your book is beautiful and brave. It’s going to be so meaningful to families living through dementia, Alzheimer’s, Parkinson’s — any neurodegenerative disease that affects cognition.

Kimberly Williams-Paisley: That’s my hope! I imagine there’s still hardship to come in my mom’s journey, but it’s easier now to look at it and see the beauty in it.

Veronique: At what point did you realize that Linda’s story should be told?

Kimberly: I remember going to Haiti after we had to place my mother in full-time assisted care because I thought, I can’t help her here anymore, and I think she’d want me to help people there. When I got back I thought, what else can I do? I wanted to start talking publicly about my story and even joked with my family about writing a book. And so I did a story for Redbook magazine. After it was published, I was amazed at the responses I got. It was healing and wonderful to connect with other people in similar situations.

Veronique: Throughout “Where the Light Gets In” you share surprising moments of light — times when there is calm, perspective, hope and happiness. What would you say to someone in those early days who is facing a diagnosis and wondering, Can my life still be good?

Kimberly: Absolutely! There have been many moments of joy. My mother’s excitement and passion for her family grew as the dementia progressed — in some ways she was more delightful than she’d ever been. Her relationship with my son Huck was incredible and lovely, and the energy she had with him outlasted all of us. I would say to someone facing a diagnosis that it’s not all bad. Yes of course there is sadness and struggle and change, but also a lot of joy. I would encourage patients and caregivers to reach out to support groups, to get help. In my family there was a tendency toward secrecy and thinking that we could do it all by ourselves. But there is a very large community in the dementia and Parkinson’s arena. It can be healing, even sustaining, to connect with that world.

Veronique: Linda was an incredibly dignified person, though she had a huge capacity for fun. She was strong and compassionate, a devoted mother and a respected leader at MJFF. Was it challenging to share the parts of her illness that are not beautiful and glossy — the reality of changes and loss that can come with dementia?

Kimberly: I still wrestle with it a little, to be honest. There are moments in the course of her disease that I know my mom definitely did not want exposed, but I also know she has always wanted to do good in the world and spread hope. In writing her history, I needed to do it truthfully. And the truth is there were a lot of dark and ugly times, but also beautiful and even funny days. My mother really admired Michael J. Fox and his bravery in telling his story and using it to raise awareness and accelerate research. My mom believed in what he did and loved him for it. I think about that now when I’m telling her story. The way she thought of Michael is how I think of her, that she would want to portray the sad realities as well as the hope.

Veronique: What do you wish you had known at the beginning of your mother’s diagnosis that you only discovered along the way?

Kimberly: I wish I’d insisted that my dad, the main caregiver, get help and that my mother had given more specific instruction as to what she wanted in her last years. I would’ve liked to hear I trust you and the decisions you’ll make. Also, my mother knew this was irrational, but somehow she feared this disease was her fault. She was also afraid that when people learned her diagnosis they would think she wasn’t smart. I understand that fear, but I wish my mom had been able to let go of that. It might have opened her up to asking for more help.

Also, there should be a balance between respecting the needs and limitations of the patient and the needs of the caregiver as the disease progresses. It requires a lot of communication and love. We had the love part. We should have enlisted outside help so we weren’t the bad guys, especially when it came time to insist that my mother no longer drive. It was painful watching someone like her, a person who had always been adventurous, suddenly lose her independence.

Veronique: What would you say are some of your biggest family successes in this journey?

Kimberly: I think we showed extraordinary love for one another. That’s what I come away with. We really respect each other and the different ways we see this journey. This is an ongoing journey for us. There are good days and bad days. It’s about becoming comfortable with what’s uncomfortable. And we’re grateful for the moments of joy. I would say in some ways we’re as close as ever as a family.

Veronique: If you could describe how you want your mother to be remembered, what would you say?

Kimberly: Joyful, passionate, empathic. She cared deeply about the people around her and loved with her whole heart. She was also very impish, loved to laugh — she had a sparkle in her eye and loved to get into mischief!

Veronique: Is there a final message you want to share with families coping with any life-altering diagnosis?

Kimberly: When we’re faced with any kind of challenge in our lives it’s an opportunity to grow, to open our hearts, to form stronger bonds in our community, and with our family and our loved ones. You will meet angels who are wise and wonderful and helpful. We have people in our lives from of this journey who will now be lifelong friends because we’ve weathered this storm. We are different people, and better for it in many ways.

Source:: FoxFeed Blog

      

Get Outdoors and Support Parkinson’s Awareness Month

By Sam Fox

April is upon us. That means the start of both Parkinson’s Awareness Month and the Team Fox Million Dollar Month challenge. In much of the country it also means warmer temperatures, sunshine — and if you’re anything like me — that itch to spend as much time as possible outside. So as you start to make summer plans, just remember there’s no better time to turn your hobby into a fundraiser for Parkinson’s research.

This month, register your outdoor event with Team Fox and help us inch closer to that one million dollar goal. Any outdoor activity can be turned into a fundraiser — from extreme to moderate, solo to community-based. If you need a little inspiration, check out a few popular options below and see how I’m helping to make April a million dollar month.

Climb Something

Climbing can be used as a metaphor for any obstacle — just keep pushing, keep looking up, and at some point, you’ll reach that reward at the top. For me, taking this advice has always led to fulfillment, especially when my climbs have doubled as fundraisers. Whether you’re a seasoned pro or you’re looking for a new challenge, the view from the top is always worth the effort. Some climbs are big (14,000 feet big!), like the one Team Fox member Christie Brooks will take on in July. But a summit can be defined in so many different ways — a hill near your house, the tallest building in your city or anything else that challenges you. So get out there and find your summit, and don’t forget to take pictures of the view.

Go Ride a Bike

Personally, I didn’t quite get enough riding last summer during the Tour de Fox. Luckily, there are more cycling opportunities than ever for those that want to support the Foundation. No matter what kind of cyclist you are (or even if you aren’t a cyclist at all) there’s an event for you. Bookended by Jake’s Ride on May 1, and the New England Parkinson’s Ride on September 10, events are abundant and spaced out across the country. So riders, be sure to check out the Team Fox Athletes page to find a ride that suits you (and stay tuned for updates about the future of the Tour de Fox!).

Walk 500 Miles

OK, maybe not 500 miles (though Team Fox members have covered that and more!), and maybe not all at once, but keeping it simple by promising to get outside for a walk every day is a great way to stay in shape, and believe it or not, it’s easy to turn into fundraiser, too. Using the Charity Miles app (which was invented by a Team Fox member), I’m keeping track of every mile I walk with my dog, Ducky, in 2016. My goal is 1,000 miles, which means Charity Miles will donate $250 for my efforts to the Foundation. But I’m also asking friends and family to make donations if I hit the target. This might be the simplest Team Fox “event” I’ll ever be a part of.

New Team Fox member Ken Kisch is taking his walk a few steps farther. He’ll be hiking a nearly 100-mile section of the famed Pacific Crest Trail in Washington State over one week in August with the goal of raising $15,000! So whether you are on a pilgrimage of hundreds of miles, or you simply pledge to cover a mile a day, register your plans as a Team Fox event and see how a few simple steps (literally!) can make an impact on Parkinson’s research.

Hit the Water

Nothing says summer like being on the water. Though water sports can admittedly bring a more challenging logistical element to a fundraising event, it doesn’t mean there aren’t some great ideas out there. Team Fox members have organized canoe and kayak tours, sailing regattas, and my personal favorite, a bass fishing tournament all in the name of research — and fun!

No matter what activities you enjoy, make the most of your summer hobbies and sign up today with Team Fox!

Source:: FoxFeed Blog