Ask Your Senators to Support National Parkinson’s Data Collection

By Allyse Falce

Today, grassroots advocates from across the country have gathered on Capitol Hill with the Parkinson’s Action Network (PAN) to speak with members of Congress about critical Parkinson’s disease (PD) initiatives.

Not on Capitol Hill for this Parkinson’s Day of Action? No problem – you can still show your support for public policies that improve the lives of people living with PD.

Contact your senators and tell them about the importance of the Advancing Research for Neurological Diseases Act (S.849/H.R. 292) before 5:00 p.m. ET today.

This bill would create a national data collection system for PD and other neurological diseases at the Centers for Disease Control and Prevention (CDC), enabling the CDC to track the incidence (number of new cases) and prevalence (number of all cases) of Parkinson’s. This system would collect data on a number of factors, including the geography of diagnoses, variances in gender and changes in health care practices.

Currently, there are an estimated 1 million Americans living with PD, but we lack the resources for a more accurate count. Without access to data about the size and makeup of people with Parkinson’s, the research community is limited in what it can accomplish.

This data would help researchers develop improved therapies for people living with PD today, allow for future planning of health care needs and help detect changes in health practices. In addition, the Parkinson’s care and research communities could use this information to promote education and awareness about neurological diseases and the need for clinical research volunteers.

Thanks to the efforts of Parkinson’s advocates the Advancing Research for Neurological Diseases Act was included in the 21st Century Cures Act, a bipartisan piece of legislation aimed at spurring development of new treatments for diseases. On July 10, 2015, the 21st Century Cures Act was passed by the House of Representatives by a resounding vote of 344 to 77. Now attention turns to the Senate.

Take action now, and help move this important piece of legislation forward. Find your senators and send them a message of encouragement or thanks for their support of the Advancing Research for Neurological Diseases Act.

Please share this post with family, friends and your Parkinson’s community.

Source:: Fox Feed Blog

New approaches for Parkinson’s treatment? Researchers study metabolic changes

Researchers are studying the causes of premature aging of neurons in Parkinson’s patients with a defective DJ1 (PARK7) gene. The genetic defect causes changes in the cellular metabolism meaning that neurons are subjected to oxidative stress and an increased immune response in the brain.

Source:: Science Daily

Coming Together in Charleston to Fox Trot 5K for Parkinson’s

By Seth Manthey

After witnessing the successes of our members who led Fox Trot races across the country, Team Fox launched a do-it-yourself Fox Trot series in 2015. Now anyone can use their talents to customize and host a Fox Trot race in his or her hometown!

The Fox Trot for Parkinson’s Research in Charleston, West Virginia, is one of many races that inspired the Fox Trot series. Hosted by longtime Team Fox member George Manahan, the Charleston Fox Trot has raised more than $70,000 for Parkinson’s research since 2012. This year, the team aims to bring together hundreds of members of the PD community and raise $40,000.

Since the first race, many have lent their time and skills to support George and the Charleston Fox Trot — Connie Jones, Missy Spangler and James Strawn are a few of the people who come back each year. We asked them to answer a few questions about their involvement with the Fox Trot for Parkinson’s Research.

Team Fox (TF): What inspired you to get involved with the Fox Trot for Parkinson’s Research?

Connie: After I was diagnosed, I hid my right hand for the first two years. My husband Pat saw George on a local TV show speaking about the Fox Trot. It took some convincing from my family to join the walk, but I then decided to tell people that I have Parkinson’s disease (PD). I now dedicate my life to raising awareness. Also, I do anything and everything in my power to raise money for research.

Missy: George posted on Facebook about this event, and a friend tagged me in it, knowing my connection with Team Fox. I didn’t know George at all and I messaged him, I offered any help and guidance I could having a history with Team Fox and some past involvement through race participation.

James: When my dear friend George and founder of the Fox Trot communicated that he was diagnosed with Parkinson’s. In our fourth year now, the event continues to grow in numbers and funds raised. And George continues to be the guiding light toward a cure for Parkinson’s in our community.

TF: How many years have you been involved?

Connie: I’ve been involved with the Fox Trot every year since it was born in March 2012. The first year I had two weeks to raise money and form a team — I raised $3,000.00 and had 90 people walk with me. Team Momma Jones was born!

James: Since 2013. Not only through the Fox Trot, but George and Connie have become regular guests on our TV show to discuss fundraising events for MJFF.

TF: What’s your favorite thing about this race?

Missy: My favorite thing is seriously the people. It has truly grown. Each year we reach new people who are associated with PD and we become even closer to those who come back and help with the race and participate. There is always this unspoken understanding between families who know what this disease has done and even without words, it’s a sense of comfort. Just seeing everyone come together in honor of teams, friends, family makes it such an awesome day. I have truly grown to love these folks and consider them family. We’ve learned we can count on each other for anything — even if it’s just a smile on a bad day. We have told each other multiple times, we may not enjoy the reason as to why we’ve been brought together, but it’s one of the things I’m most thankful for along this journey.

Connie: My favorite thing about the Fox Trot is the fellowship. It’s wonderful to see people living with PD, caregivers, families and friends interact with not just each other but with everyone. Some of us can no longer participate but refuse to let PD keep us from the race while encouraging the walkers and runners.

James: That look of hope and optimism in the eyes of the walkers/runners who have Parkinson’s. It is a special day. The feeling of hope abounds in the air. It is genuine. I am a very optimistic person and this event truly inspires my soul.

The 2016 Charleston Fox Trot for Parkinson’s Research will be held on Saturday, March 19 in conjunction with the Capitol Market Green Chili Shootout, one of the largest chili cookouts in the country.

Can’t make this event? Join the Charleston Fox Trot virtual 5k or check “MJFF in your area” for a local Fox Trot race! And if you’re interested in starting your own Fox Trot race, please email athletes@michaeljfox.org and we’ll help you get started!

Source:: Fox Feed Blog

Five Ways to Help with Parkinson’s Care When You Live Far Away

By Nancy Ryerson

If you live far away from a loved one with Parkinson’s, you may feel limited in how much you can help out. Our community shares advice on simple ways to feel more connected and involved, whether you and your loved one live a car ride or a flight apart.

As you reach out, remember that long-distance support can be emotionally draining. You may feel anxious or guilty when you’re away from your loved one, or stressed about fitting everything into a short visit. Know that these feelings are normal, and try talking with a friend or use other emotional management tips to help.

1. Keep your own binder or other organizational system with your loved one’s medical information. Keep track of medications your loved one takes, contact information for their doctors and other notes about their care. Create a contact list of neighbors and friends who you can reach out to in case of an emergency.

2. Call, email or Skype most days, depending on your loved one’s preferences. Parkinson’s disease can impact speech, making phone calls difficult. For others, typing an email may pose a challenge. Try to reach out once a day in whichever way works best for you and your loved one.

3. If you can, occasionally have meals delivered or hire someone to do housework or yard work. Your loved one and the primary caregiver will appreciate the small break.

4. Ask how the primary caregiver is doing, too. As part of your check-in calls, chat with the primary caregiver. Caregiving can be stressful, and talking about how they’re feeling can help.

5. Make the most of your visits. Catch up on medical updates and ask about symptoms your loved one has experienced since you last visited. And talk about shared interests that aren’t related to Parkinson’s. Your visit can also be a good opportunity to give the primary caregiver the night off.

Source:: Fox Feed Blog

Ask the MD: Expanded Indication for DBS in Parkinson’s

By Rachel Dolhun, MD

Last week, the U.S. Food and Drug Administration (FDA) expanded the approved use of deep brain stimulation (DBS) in people with Parkinson’s. The surgical therapy is now also indicated for those who have had Parkinson’s disease (PD) for at least four years and have recently developed motor complications —”off” times when medication doesn’t work well to control symptoms and/or dyskinesia (uncontrolled, involuntary movements). Previously, DBS was offered to people who had Parkinson’s for at least five years, so this therapy now will be available at an earlier point in the disease.

DBS Is a Symptomatic Treatment

DBS was initially approved for PD tremor in 1996 and then for advanced Parkinson’s in 2002. Like all currently available therapies, DBS is symptomatic. It isn’t a cure and won’t change the course of the underlying disease. It’s also not for everyone because it doesn’t work for all of the symptoms of Parkinson’s (like balance problems or freezing while walking) and could even make some non-motor symptoms, such as memory or speech problems, worse.

However, in the right candidate, DBS may:

  • lessen motor symptoms, such as slowness, stiffness and tremor,
  • decrease medication usage (and therefore limit side effects, including motor complications),
  • enhance ability to perform routine activities of daily living, and
  • improve quality of life.

A 2013 trial published in the New England Journal of Medicine showed that for people with PD who developed motor complications early in the disease course, quality of life improved for those treated with DBS and medication as compared to those treated with medication alone. These results were part of the reason for broadening the indications for use of DBS in Parkinson’s.

Choosing and Undergoing DBS Therapy Requires a Complex Process
People considering DBS should have an evaluation by a movement disorder specialist (a neurologist who has extra training in Parkinson’s) and a neurosurgeon, who performs the surgery. These doctors review current symptoms and medication history. They also conduct extensive testing, including physical examinations both on and off medications, brain imaging and detailed memory testing (to detect any memory/thinking problems that could worsen with DBS).

Talking through this option with one’s loved ones and physicians is important. Although the procedure is generally safe, it is brain surgery and comes with certain risks (e.g., infection, bleeding). Every individual’s response to DBS is dependent on his or her symptoms and situation so discussing expectations of benefits prior to the procedure is also key.

In the actual surgery, thin wires called electrodes are implanted in to one or both sides of the brain in the areas that control movement — either the subthalamic nucleus or the globus pallidus. The wires are then connected to a small device in the chest, a pulse generator (much like a pacemaker), which sends electrical signals through the wires into the brain.

A few weeks after surgery, settings tailored to each person are programmed into the DBS device by a movement disorder specialist. These are gradually tweaked over time to give the most benefit and fewest side effects, and medications are usually adjusted at the same time. Finding the right combination of DBS settings and medications can take months or even up to a year. Every five to 10 years, depending on the type of pulse generator and the settings, the battery may need to be replaced.

Currently, the only DBS system available is made by the company Medtronic, but others are in development.

DBS Works by Affecting Abnormal Brain Signaling Patterns
Although the mechanisms are not completely clear, DBS is thought to work by regulating abnormal signaling patterns in the brain. In order to control movement and other normal bodily functions, brain cells communicate with each other using electrical signals (and brain chemicals). In PD, these electrical signals become irregular and uncoordinated, and people experience motor (and other) symptoms. DBS affects disjointed signals to allow the cells to communicate more smoothly and thereby lessen symptoms.

Studies Are Working to Improve and Expand DBS
Researchers are working to improve the experience of DBS systems and expand its use for even more people and more symptoms. One example is DBS targeting a different area of the brain (the pedunculopontine nucleus) to treat the walking and balance problems that don’t typically improve with current DBS approaches. Another is the development of so-called “smart” DBS devices. These record a person’s unique brain activity and then deliver electrical stimulation only when needed, such as when symptoms return, rather than continuously, as the current systems do. This improvement may help avoid some of the side effects of stimulation (e.g., numbness/tingling, speech problems) and lengthen battery life of the pulse generator, reducing the need for replacement procedures.

In addition, investigators are working to determine if DBS would be effective — work better than medication, improve quality of life, delay development of motor complications — in even earlier stages of Parkinson’s. A small trial of people with early-stage Parkinson’s demonstrated that DBS was safe and tolerated so now a larger clinical trial of DBS in people who, among other criteria, have been taking medication for four years or less is in the works. All participants will have the DBS system implanted and continue PD medications, but for the first two years only half of the volunteers will have the DBS turned on. For the second two years, all participants will receive DBS plus medications. MJFF is supporting the efforts to complete the planning phases (including a grant proposal to the National Institutes of Health for full funding) so that this pivotal trial can launch. Along with providing financial support, MJFF was able to aid researchers in collecting information regarding individuals’ willingness to volunteer for a trial like this using Fox Insight (an online tool that allows people with PD to submit data on their Parkinson’s experience).

The recent FDA approval of DBS with Parkinson’s disease for four years or more expands the population of people with PD who can potentially benefit from therapy. Ongoing and future research endeavors will hopefully continue to broaden this group and the potential uses of this treatment.

about deep brain stimulation.

Watch a webinar on DBS to learn more about ongoing research in this area and hear one patient’s story.

Find studies testing DBS and other therapies on the MJFF clinical research matching tool Fox Trial Finder.

The “Ask the MD” series is supported by Acorda Therapeutics. While our generous sponsors make the “Ask the MD” program possible, their support does not influence MJFF’s content or perspective.

Source:: Fox Feed Blog

For me the Tour was a euphoric blur — new place after new place, beautiful views, warm faces and a lot of time spent on a bike seat. Since it ended, it's been fun to catch up with people I met along the way to hear about their experience with the Tour. After all, with thousands of participants, this project has taken on many forms. I asked a few people to share their experience.

Veronica Tuerffs, who joined us for multiple events this summer including our climb to Colorado's highest peak, talked about what it meant to reach the summit with such a large group of family and friends.

"Being able to be on a summit is a magical thing. That feeling of accomplishment is one that I have been unable to find anywhere else. When you are able to get there with a group of friends and family though, it becomes much less about conquering something and so much more about completing something together. You literally get to look back on what you just accomplished with those that worked on it with you and say, 'Wow, look what we just did.' There are not many times in today's day and age when you are standing side-by-side with the people you are collaborating with and get to reflect together in real time."

Veronica was part of a group that was climbing in support of (and alongside!) Greg Gerhard, her future father-in-law, who was diagnosed with PD in 2009.

"My soon to be father-in-law and I have climbed together a lot...but this felt different. The moment on the summit of Mt. Elbert was very touching. I wasn't only seeing him accomplish a climb, I was seeing him do it surrounded by 10 people that were there for him — who were cheering him and others on the whole time — who dedicated their climb to him. I've never felt more honored to stand on a summit."

I remember that day and the Gerhard family vividly. In fact, I was fighting back tears as I turned and headed down from the top. But crew member Chris Stanley had the wherewithal, like he always did that summer, to capture the Gerhard's moment on film. When I asked Chris about his most memorable moments from the Tour, the climb with the Gerhards was at the top of his list.

"The top of Mt. Elbert in Colorado was a very special place. Climbing mountains, especially ones the size of Elbert, is an emotional rollercoaster. Is the weather going to be okay? Am I properly equipped? Is this switchback ever going to end? And when you're responsible for leading people up mountains — the peaks and troughs of the experience are amplified. When Greg reached the top of the mountain and was greeted by his family and friends I started to cry. I wasn't sure why. Greg isn't my Dad and I had only met him once before, but I was filled with joy and proud of the Tour crew for helping to build this experience."

Chris hits the nail on the head. Everyone on the crew and those who worked so hard to make the Tour a reality felt a real sense of pride and privilege when witnessing moments like this.

The highest mountain on the Tour route was California's Mt. Whitney. This climb took three days and involved tents, ropes, harnesses and a large team. We got to know each other very well over those three days of mutual exhaustion that created a lasting shared experience. I caught up with Christina Hunt-Fuhr, one of the California climbers. She trained, climbed and fundraised for her dad Jerry Hunt, who passed away four years after his PD diagnosis in 2001. Christina talked about how the climb made her feel closer to her father.

"I kept thinking about the conversations I used to have with my dad after he was diagnosed. He would tell me how he was sad (and scared) knowing that the moments [of clarity] would be temporary. Occasionally, he would ask me to go on a walk when he was having one of his better days. Something about getting outside and moving — even if it was just to the corner and back — made him feel better. So, while training for the hike, I'd often climb a mountain by myself with a full backpack, which slowed me down — just like he had been slowed down — and I'd think about him. I also thought the route we took to Whitney was extra meaningful, since it was full of unique challenges, and people with Parkinson's are presented with unique challenges every day. When faced with challenges, it reminded me of the importance of focusing on one day — or one step — at a time and allowing others around you to help you in whatever way that makes sense to you."

Christina is a relatively recent convert to extensive outdoor activities. When I spoke to her recently though, she was in the car with her son, heading out on a camping trip (in February!, oh to live in California...) so I asked her if there was anything about our climb that had left a lasting impact on her.

"There are so many aspects of the trip (and of training for it) that have stuck with me. Something about being in nature, with the beautiful and ever-changing landscapes, and raising money for a cause that didn't personally involve me, just reminded me that life is bigger than me. Whenever I start to get caught up in my day-to-day drama, I still find myself thinking about it. The entire journey has helped me be more present and more thankful for every moment. It has also reminded me of the importance of continuing to challenge myself in various ways. It just makes every day so much more exciting!"

I knew everyone's experiences were unique last summer, but it seems like many of the takeaways and lessons are in-line with one another. From state to state and summit to summit the Tour connected people who were once separate. Either way, I couldn't be more proud to be part of the Tour family — one I hope to see grow in 2016.

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Tour de Fox 2015: Five Months Later

By Sam Fox

It’s been almost five months since 80 of us arrived at the top of the Grouse Grind outside Vancouver, British Columbia. It was a clear and sunny day and we had views for miles in every direction — a fitting place to wrap up the adventure of a lifetime. That adventure included thousands of miles cycling and 49 different summit views in 48 states and Canada. But more importantly it included meeting more than 3,000 people dedicated to finding a cure for Parkinson’s disease (PD) who collectively helped the Tour de Fox raise over $2.5 million for research!

For me the Tour was a euphoric blur — new place after new place, beautiful views, warm faces and a lot of time spent on a bike seat. Since it ended, it’s been fun to catch up with people I met along the way to hear about their experience with the Tour. After all, with thousands of participants, this project has taken on many forms. I asked a few people to share their experience.

Veronica Tuerffs, who joined us for multiple events this summer including our climb to Colorado’s highest peak, talked about what it meant to reach the summit with such a large group of family and friends.

“Being able to be on a summit is a magical thing. That feeling of accomplishment is one that I have been unable to find anywhere else. When you are able to get there with a group of friends and family though, it becomes much less about conquering something and so much more about completing something together. You literally get to look back on what you just accomplished with those that worked on it with you and say, ‘Wow, look what we just did.’ There are not many times in today’s day and age when you are standing side-by-side with the people you are collaborating with and get to reflect together in real time.”

Veronica was part of a group that was climbing in support of (and alongside!) Greg Gerhard, her future father-in-law, who was diagnosed with PD in 2009.

“My soon to be father-in-law and I have climbed together a lot…but this felt different. The moment on the summit of Mt. Elbert was very touching. I wasn’t only seeing him accomplish a climb, I was seeing him do it surrounded by 10 people that were there for him — who were cheering him and others on the whole time — who dedicated their climb to him. I’ve never felt more honored to stand on a summit.”

I remember that day and the Gerhard family vividly. In fact, I was fighting back tears as I turned and headed down from the top. But crew member Chris Stanley had the wherewithal, like he always did that summer, to capture the Gerhard’s moment on film. When I asked Chris about his most memorable moments from the Tour, the climb with the Gerhards was at the top of his list.

“The top of Mt. Elbert in Colorado was a very special place. Climbing mountains, especially ones the size of Elbert, is an emotional rollercoaster. Is the weather going to be okay? Am I properly equipped? Is this switchback ever going to end? And when you’re responsible for leading people up mountains — the peaks and troughs of the experience are amplified. When Greg reached the top of the mountain and was greeted by his family and friends I started to cry. I wasn’t sure why. Greg isn’t my Dad and I had only met him once before, but I was filled with joy and proud of the Tour crew for helping to build this experience.”

Chris hits the nail on the head. Everyone on the crew and those who worked so hard to make the Tour a reality felt a real sense of pride and privilege when witnessing moments like this.

The highest mountain on the Tour route was California’s Mt. Whitney. This climb took three days and involved tents, ropes, harnesses and a large team. We got to know each other very well over those three days of mutual exhaustion that created a lasting shared experience. I caught up with Christina Hunt-Fuhr, one of the California climbers. She trained, climbed and fundraised for her dad Jerry Hunt, who passed away four years after his PD diagnosis in 2001. Christina talked about how the climb made her feel closer to her father.

“I kept thinking about the conversations I used to have with my dad after he was diagnosed. He would tell me how he was sad (and scared) knowing that the moments [of clarity] would be temporary. Occasionally, he would ask me to go on a walk when he was having one of his better days. Something about getting outside and moving — even if it was just to the corner and back — made him feel better. So, while training for the hike, I’d often climb a mountain by myself with a full backpack, which slowed me down — just like he had been slowed down — and I’d think about him. I also thought the route we took to Whitney was extra meaningful, since it was full of unique challenges, and people with Parkinson’s are presented with unique challenges every day. When faced with challenges, it reminded me of the importance of focusing on one day — or one step — at a time and allowing others around you to help you in whatever way that makes sense to you.”

Christina is a relatively recent convert to extensive outdoor activities. When I spoke to her recently though, she was in the car with her son, heading out on a camping trip (in February!, oh to live in California…) so I asked her if there was anything about our climb that had left a lasting impact on her.

“There are so many aspects of the trip (and of training for it) that have stuck with me. Something about being in nature, with the beautiful and ever-changing landscapes, and raising money for a cause that didn’t personally involve me, just reminded me that life is bigger than me. Whenever I start to get caught up in my day-to-day drama, I still find myself thinking about it. The entire journey has helped me be more present and more thankful for every moment. It has also reminded me of the importance of continuing to challenge myself in various ways. It just makes every day so much more exciting!”

I knew everyone’s experiences were unique last summer, but it seems like many of the takeaways and lessons are in-line with one another. From state to state and summit to summit the Tour connected people who were once separate. Either way, I couldn’t be more proud to be part of the Tour family — one I hope to see grow in 2016.

Source:: Fox Feed Blog

Regulation of Parkinson’s disease inflammatory responses by a MicroRNA

A small regulatory RNA called microRNA-155 appears to play a key role in the brain inflammation that helps foster Parkinson’s disease. This finding, using a mouse model, implicates microRNA-155 as both a potential therapeutic target and biomarker for this progressive neurodegenerative disorder.

Source:: Science Daily

Better visual, video skills can lead to earlier, more accurate movement disorder diagnoses

Because there is no definitive blood test or brain scan to confirm a diagnosis of movement disorders like Parkinson’s disease, neurologists rely on visual examination to diagnose and track these diseases. Researchers say that even better operate a video camera can make a big difference in the early diagnosis of movement disorders.

Source:: Science Daily

A few months ago, I had a surprise reunion with Babbette in the neighborhood's Ross Dress For Less clothing store scouting for Speedo markdowns.

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another's stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson's disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she'd soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette's engagement, she blurted out her secret.

"I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence."

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette's abiding acceptance of her prognosis, her seeming acceptance of this fate as "signed, sealed and delivered."

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, "To strive, to seek, to find, and not to yield" is inspirational.

Despite Babbette's candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, "pre-existing conditions" created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets.

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To Tell or Not to Tell: Secrecy and Privacy

Guest blogger Cheryl Kingston of Los Angeles, California has lived with Parkinson’s for 23 years and uses humor and creative writing to share her personal experiences.

A few months ago, I had a surprise reunion with Babbette in the neighborhood’s Ross Dress For Less clothing store scouting for Speedo markdowns.

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another’s stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson’s disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she’d soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette’s engagement, she blurted out her secret.

“I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence.”

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette’s abiding acceptance of her prognosis, her seeming acceptance of this fate as “signed, sealed and delivered.”

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, “To strive, to seek, to find, and not to yield” is inspirational.

Despite Babbette’s candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, “pre-existing conditions” created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets.

Source:: Fox Feed Blog

Promising respiratory drug focus of new clinical trial for parkinson’s disease

A medication approved to treat various respiratory diseases and that has demonstrated neuroprotective effects in preclinical studies is the focus of a new clinical trial for Parkinson’s disease.

Source:: Science Daily