community

Irish entrepreneur uses technology to fight PD

October 1, 2018 Community Outreach, Life, Research

Ciara Clancy is no ordinary entrepreneur, with her company Beats Medical far less concerned with making money than it is with helping people live with various neurological conditions.

At the age of just 29, Ciara Clancy’s work in helping people to live with the likes of Parkinson’s disease, Alzheimer’s, dyspraxia and the effects of stroke are unparalleled on the island of Ireland.

Speaking to host Tadhg Enright on this week’s The Architects of Business, in partnership with EY Entrepreneur Of The Year™, Ciara reveals the reason why she left behind her career as a physiotherapist.

A highly driven and passionate individual, Ciara wanted to create technology – based on Metronome Therapy, which helps Parkinson’s sufferers in particular – that would make it as easy for those living with these life-changing conditions to get around at home as it would be under medical supervision.

“I remember the exact moment that I decided I wanted to found Beats Medical,” Ciara – a 2016 finalist in the EY Entrepreneur Of The Year™ programme – reveals.

“A person with Parkinson’s disease was coming into me for this Metronome Therapy in a hospital, and he was 20 minutes late and I went out to find him stuck, frozen at the main entrance.

“And this was happening everywhere we went, every door he went through, and I knew that when he came into clinic he walked very well with Metronome Therapy but he’d go home and this would persist, and it was at that point I said I can’t go 20 years into my career and not try. I need to find a way to bring this treatment into the home.

“That’s when I decided to step out of my career as a physio and volunteer with a Parkinson’s charity to understand needs outside of the hospital. And really that’s how Beats Medical was born.”

Article from JOE.ie.

Long-Distance Caregiving: Tips for Success

October 1, 2018 Caregivers, Life

Know What You Need to Know

Experienced caregivers recommend that you learn as much as you can about your family member or friend’s illness, medicines, and resources that might be available. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier. Make sure at least one family member has written permission to receive medical and financial information. To the extent possible, one family member should handle conversations with all healthcare providers. Try putting all the vital information in one place—perhaps in a notebook or in a shared, secure online document. This includes all the important information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers, and keep the information up to date.

Plan Your Visits

When visiting your loved one, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your family member or friend ahead of time and finding out what he or she would like to do. Also, check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to get some new winter clothes or visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother’s physician? Decide on the priorities and leave other tasks for another visit.

Remember to Actually Spend Time Visiting with Your Family Member

Try to make time to do things unrelated to being a caregiver. Maybe you could find a movie to watch with your relative, or plan a visit with old friends or other family members. Perhaps they would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone, and it builds more family memories. And keep in mind that your friend or relative is the focus of your trip—try to let outside distractions wait until you are home again.

Get in Touch, and Stay in Touch

Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff so several relatives can participate in one conversation and get up-to-date information about a relative’s health and progress. If your family member is in a nursing home, you can request occasional teleconferences with the facility’s staff. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. You might also talk with a family member or friend in the community who can provide a realistic view of what is going on. In some cases, this will be your other parent. Don’t underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents’ needs.

Help the Person Stay in Contact

For one family, having a private phone line installed in their father’s nursing home room allowed him to stay in touch. For another family, giving Grandma a cell phone (and then teaching her how to use it) gave everyone some peace of mind. These simple strategies can be a lifeline. But be prepared—you may find you are inundated with calls or text messages. It’s good to think in advance about a workable approach for coping with numerous calls.

Learn More About Caregiving

Whether you are the primary caregiver or a long-distance caregiver, getting some caregiving training can be helpful. As with a lot of things in life, many of us don’t automatically have a lot of caregiver skills. For example, training can teach you how to safely move someone from a bed to a chair, how to help someone bathe, and how to prevent and treat bed sores, as well as basic first aid. Information about training opportunities is available online. Some local chapters of the American Red Cross might offer courses, as do some nonprofit organizations focused on caregiving. Medicare and Medicaid will sometimes pay for this training.

Gather a List of Resources in the Care Recipient’s Neighborhood

Searching the Internet is a good way to start collecting resources. Check with a local library or senior center, the Area Agency on Aging, or the Eldercare Locator to find out about sources of help.

Information from Today’s Caregiver.

How to Date when you have Parkinson’s

October 1, 2018 Life

In my wildest imagination, I never would have predicted that I’d be in my 50s, single, living with Parkinson’s and living on long-term disability. Nevertheless, here I am. I was diagnosed in 2008 and became single again in 2015. That same year, I relocated my newly single self to a new state. I had family nearby, but otherwise, I knew no one.

Determined that my life would not be defined by Parkinson’s, I set out to live the best life I could. My priorities were to establish a community of friends and a new team of healthcare providers, to get my finances in order and to create a full and happy single life.

I socialized and made friends, but I specifically avoided group or one-on-one settings that hinted of dating. I wasn’t yet comfortable enough with my new single life.

While all of these priorities require ongoing attention, after about a year I felt sufficiently comfortable in this new life to consider the possibility of dating. I was feeling happy, and that set the foundation for me to enjoy romantic companionship as a nice addition to my life.

While online dating was unfamiliar territory, it seemed like the most straightforward way to meet someone. When I set out to compose my dating profile, I considered starting with “Unemployed, single woman with an incurable, progressive neurodegenerative disease seeks…..”

I decided that wasn’t the way to go, even though I got a good chuckle out of it.

When I met the first compatible guy, I had some genuine discomfort with not knowing exactly how or when to share my diagnosis. I felt vulnerable laying out my cards like that, but I also knew that avoiding vulnerability wasn’t an option if I wanted to live my life to its fullest potential.

So having Parkinson’s became just one of many things I’d share. One more “are we compatible” question to be answered in time. Mr. Compatibility never blinked when our plan to walk around the park became a walk to the nearest bench. And he was understanding if I canceled our plans because I was hit with a bout of fatigue. When we stopped dating after a few months, it was not because of Parkinson’s.

Since my re-entry into dating, I’ve had a dozen or so coffee or happy hour first dates and a couple of months-long relationships. I learn more about myself with every coffee, chat or relationship. People are endlessly fascinating, and each guy I meet teaches me something.

Because I believe that a relationship could enhance my life, I’ll keep at it. My father taught me that there are four relationships states in reverse priority order: Unhappily coupled, unhappily single, happily single and happily coupled.

I’ll admit that I still occasionally wonder why anyone would choose to be with someone who has Parkinson’s. Fortunately, the times I’ve asked that aloud have been to my therapist, family or friends. In other words, people who know my inherent worth. I believe that all human beings are worthy of being loved even though I, too, need a periodic reminder. Fortunately, I also know that everyone, without exception, suffers from their insecurities and that those come front and center when dating.

Over time, I’ve learned the value of packing up my insecurities and choosing to play the game rather than taking my ball and going home. After all, dating is just that. Dating. I don’t go on a first date thinking this is my next husband. I agree to go on a date because I think I might enjoy this person’s company.

My plan, for now, is to continue dating as opportunities present themselves, and I’ll remain open to the possibility of being happily coupled while continuing to live the life I love and enjoying my “happily single status.”

Article from Davis Phinney Foundation.

Other resources on dating with Parkinson’s:
Forming New Relationships
5 Tips for Singles with Parkinson’s
Advice on Dating after a PD Diagnosis

Brian Grant Foundation launches free PD exercise program

September 1, 2018 Education, Exercise, Life

The Brian Grant Foundation (BGF) has launched an online training program for physical therapists, personal trainers and group fitness instructors to develop safe and effective exercise classes for people living with Parkinson disease. The program is based on research from Oregon Health & Science University’s Balance Disorders Laboratory, which shows how to slow down the mobility problems associated with Parkinson’s using a variety of physical and cognitive activities.

Parkinson’s is a degenerative, neurological disorder that affects the cells in the brain that produce dopamine, a chemical that helps initiate and control movement. Although there is no cure for Parkinson’s, studies suggest a consistent, vigorous fitness routine may improve motor symptoms common in people with Parkinson’s, such as rigidity, slow and small movements, and impaired balance and coordination, along with non-motor symptoms such as depression, anxiety and sleep difficulties.

“After being diagnosed with Parkinson’s, I looked for ways to combat the symptoms that I was experiencing while keeping my physical abilities as long as possible,” said Brian Grant, former NBA player and BGF founder. “I learned the importance of staying flexible, keeping good posture and practicing specific movements to address symptoms of the disease.”

Getting people into Parkinson’s-specific exercise programs in the early stages of diagnosis is fundamental because the sooner a person with the disease starts a workout routine, the better their chances of slowing the progression of symptoms. Any exercise is better than none, but ideally, workouts should be higher intensity and include a variety of activities that have been shown to help target the common symptoms of Parkinson’s. For example, lunges are helpful for improving small movements while yoga increases flexibility and coordination.

That’s why the Exercise for Parkinson’s Training for Professionals program is such a game-changer. Instructors will learn how to safely and effectively train people with Parkinson’s using activities that offer the greatest benefits for symptoms. And most importantly, they’ll empower their clients to stay motivated, healthy and social by giving them the chance to work out with others who have Parkinson’s disease.

BGF is recognized by the National Academy of Sports Medicine (NASM) and Athletics and Fitness Association of America (AFAA) as an approved continuing education provider. Exercise professionals certified through NASM or AFAA will receive continuing education credit for completing the online Exercise for Parkinson’s Training.

Brian Grant Foundation: Founded in 2010 by former NBA player Brian Grant, who is living with Parkinson’s, the Brian Grant Foundation provides tools to improve the well-being of people with the disease. BGF’s programs focus on exercise and nutrition to help people with Parkinson’s manage their symptoms, improve their overall health and prevent other serious illnesses.

Information from Brian Grant Foundation.

Training v. Exercise

August 1, 2018 Exercise

As a physical therapist who treats many people with Parkinson disease (PD), I often see people drastically improve during their time in therapy. To some degree, it’s likely due to being more active overall. We all hear that exercise is medicine. When it comes to PD, research certainly supports that claim. Exercise helps nearly every system in your body to function better. Exercise helps you to feel better. It even helps people to feel more energized.

So, with evidence about benefits of exercise pouring in from a variety of studies and journals, what’s the best kind of exercise for PD? It may sound obvious, but the “best kind” of exercise you can do is the kind you will do regularly and safely. There is a great deal of research available regarding the neuroprotective benefits of exercise and the ways in which it could be helpful to people with PD. However, if it isn’t something you will stick with, and it isn’t something
in which you find value, then even the best-laid plans will be ineffective.

Since so many forms of exercise—from walking, to raking leaves, to boxing, Pilates, cycling, Yoga, Tai Chi and more—can be helpful for people with Parkinson’s, the bigger question is, “Are you TRAINING, or are you just working out?” I ask because there is a valuable distinction. Any exercise could be helpful; however, training is more involved.

Recently, at a PD event, I heard a speaker mention that he “trains to his impairments.” It really got me thinking. I’ve had conversations on this very topic with amateur and professional athletes. I’ve known athletes who say that on their off day, they like to exercise, for example going for a jog rather than training for his sport. This sets a nice distinction for me. Training is targeted. Training may be related to acquiring or improving a skill. “Training” likely has a performance or task-related goal (for example, improving consistency with a 3-point shot…or in more real-life terms, being able to walk 150 feet from the car to the grocery store independently). In other words, training is a way to improve on specific tasks. So for PD, should you train or should you exercise? I think both! Consider this:

Exercise can be done to stay active, feel good, and to maintain health.
Training could be a way to minimize the impact of symptoms in activities of daily living or to maximize function.

In light of this new way of looking at things, I’d like to issue a challenge. Take some time to think about what physical tasks you would like to improve upon. Think about who could help you with them. Then, come up with a training plan to address those items. If you need help, consider asking an exercise group leader or your neighborhood physical therapist. Train hard to minimize your “PD Problem List,” and exercise for fun and for activity!

Here’s another challenge for you: Share your training goals with someone else, and keep them updated about the results. Along those lines, next time I will focus on improving consistency. Until then, keep up the hard work!

Article from Dallas Area Parkinsonism Society.

Caregivers: Important discussion topics to have with your loved one

August 1, 2018 Caregivers, Life

A care partner is an essential, active participant with the person with Parkinson’s in their care. While most care partners are spouses, children, siblings, parents and even friends can all be considered care partners. As your loved one living with Parkinson’s becomes less independent and more reliant on your care, your role as a care partner transitions to caregiver.

As a care partner, you are an essential member of the care team supporting the person in your life living with Parkinson’s. Your role as a care partner will evolve over the years and asking questions will help you and your loved one have an ongoing conversation about how to best partner in care to encourage you both to live well.

Here are some important discussion topics to have with your loved one:

Communicate often with your loved one to help them understand and accept your concerns and desire to help and support them. Talk about how much you expect or wish to be involved in care. Care partners typically have the most frequent and ongoing involvement in the lives of people with Parkinson’s. This brings both benefits and challenges as you will often notice effects of Parkinson’s that your loved one may not be aware of. You may find yourself feeling frustrated as you encourage your loved one with Parkinson’s to do activities to help them live well that they may not necessarily want to do, such as exercising, speaking louder or attending an appointment with a healthcare professional.
Talk about how much you expect or wish to be involved in care. Transitioning from spouse, child, parent or even friend to care partner can change your relationship with your loved one with Parkinson’s. It is important to have discussions with your loved one with Parkinson’s and the rest of the care team about everyone’s expectations about your involvement in your loved one’s care and your relationship outside of serving as a care partner.
Set up rules or even agree on a “catch phrase” that your loved one with Parkinson’s can use to let you know when they feel that your guidance and encouragement may be feeling like nagging or too much pressure.
Speak up during medical appointments. You, as the care partner, are both significantly impacted by Parkinson’s and very familiar with the effects it has on your everyday lives. If your typical medical appointments focus only on the person with Parkinson’s, let the Parkinson’s healthcare provider know that you are an active member of the care team and will be contributing during the appointments as well. Writing down the three most important things that you would like your partner’s medical provider to address is another practical step to ensuring your concerns are heard by healthcare providers.

Information from Davis Phinney Foundation.

Joe & Patty Schlicher presented with Tulip Award

June 5, 2018 Awareness, Caregivers, Community Outreach, Donate

Four years ago, Joe & Patty Schlicher took over a community golf outing that had been held for many years to support WPA. Together with their friends and family, they have held the “Movers & Shakers Classic” golf outing in Elkhorn as a way to raise awareness and money for WPA.

Joe & Patty’s support is evident through their work year-round, not just at the golf outing. They were instrumental in starting a Rock Steady Boxing class at the Geneva Lakes Family YMCA, and they started a support group for people with PD and caregivers in conjunction with the Boxing class. Patty also joined WPA’s newly formed Caregiver Committee to help us expand our programming.

Joe & Patty were surprised with the Tulip Award at the Movers & Shakers Classic on June 2. The award recognizes a worthy individual, couple, or family who have shown dedication and a commitment toward helping people with PD and educating the public about PD.

We are so grateful to Joe & Patty for the work they have done to promote hope, community, support, and resources for people with PD and their loved ones!

WPA’s revamped Mission Statement

February 1, 2018 Awareness, Change, Life

In order to realign WPA’s Mission Statement with our goals and program offerings, our Board of Directors recently revamped the statement:

Providing hope, community, support, and resources for people with Parkinson’s and their loved ones.

This new mission statement truly shows what WPA is able to provide for YOU. We are a broad and diverse organization, providing you with what you need as you navigate life with Parkinson’s – whether it’s your own Parkinson’s, or that of a loved one.

This new mission statement is flexible and broad, and doesn’t focus on any particular program or service we offer. We are constantly seeking opportunities to expand and broaden how we connect with people with Parkinson’s, caregivers, medical professionals, and more.

Finally, this new mission statement is brief and easy to remember. When someone new connects with WPA, we want to be able to easily share with them our place in this community!

Irish entrepreneur uses technology to fight PD

Long-Distance Caregiving: Tips for Success

How to Date when you have Parkinson’s

Brian Grant Foundation launches free PD exercise program

Training v. Exercise

Caregivers: Important discussion topics to have with your loved one

Here are some important discussion topics to have with your loved one:

Joe & Patty Schlicher presented with Tulip Award

WPA’s revamped Mission Statement

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WPA’s revamped Mission Statement