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Archive for the ‘Guest Post’ Category

New York State of Mind

Monday, March 30th, 2015

I have the pleasure of opening the mail each day – and this time of year it is truly a pleasure to see all those checks arriving on a daily basis! One of our walkers, Doug Nemeth does an active mail campaign in addition to soliciting online donations and his donations are coming in strong. You can only imagine my surprise when I learned that Doug isn’t able to attend the Walk this year. It’s for a great reason – his son is receiving his doctorate in pharmacology. Doug “gets” the Walk. While he loves the experience of participating each year, he understands that at the end of the day, you don’t have to physically be at the Walk to raise funds for research and his donors understand that as well. Doug will end up raising as much this year as he has in the past when he’s walked in Central Park.

Life happens and things come up that may keep you from attending the Walk one year. We hope you will take Doug’s lead and continue to fundraise. This is one instance that you don’t have to be in it, to win it. Just like the lyrics to Billy Joel’s song, Doug is in a “New York State of Mind.”

Read on to hear from Doug Nemeth of team Livin’ La Levodopa directly …

Doug-Nemeth-for-blog

I was diagnosed 10 years ago with Parkinson’s disease. At the time I had no idea what Parkinson’s disease would do to my life. I feel that the quality of my life is better now than it was 10 years ago! This has a lot to do with my wife, family and friends. Much of this is due to the hard work of researchers funded by the Unity Walk.

Many of the friends we’ve made these last 10 years have been through the Parkinson’s family. I say family because we feel like brothers and sisters. We have made many friends through our support group.

Through this support group I learned of the Parkinson’s Unity Walk in New York City’s Central Park. Though all of us share some symptoms of the disease and not others, we all share one common desire – to beat Parkinson’s disease. By supporting the Unity Walk we are putting 100% of our donations into research that gives us and our children the chance at a life without Parkinson’s disease. I have been attending the Parkinson’s Unity Walk since 2009. We have a hard-working, proud, and loving team called “Livin’ La Levodopa.” It has been rewarding beyond what I ever imagined. Thousands of people coming together with love in their hearts for all the people around them and/or loved ones lost to this disease. We are driven to do all we can to beat PD and that is why I participate in the Unity Walk.

This year I’m the proud father of a son who is graduating from University of Pittsburgh with a Doctor of Pharmacy. Who knows? Maybe he will be the one who finds the cure. Unfortunately, the graduation is the same day as the Unity Walk in New York City. My priorities are in order and I will enjoy the entire weekend with my son at graduation. A big part of my heart will be with everyone in New York City that day.

That has not kept us from fundraising even though we won’t physically be at the Walk. So far, we’ve raised close to $4500 and we’re still going strong with close to four weeks left until the Walk. After all, it’s not about the physical walk. It’s about raising awareness, demonstrating support, and raising funds for research. The fundraising has gone well again this year. We are blessed to have many people who care so much and give of their time and resources. My wife and I have raised over $34,000 since 2009 for the Parkinson’s Unity Walk. My team,”Livin’ La Levodopa” has raised over $157,000 since its inception.

We are making a difference. Many thanks to all who have contributed. We could not do it without you.

That is why I am in a “New York state of mind.”

Doug Nemeth
“Livin’ La Levodopa”

LSVT BIG – A Personal Experience

Monday, March 23rd, 2015

I recently spoke to Jenny Erasmus, one of our walkers whose mom is living with Parkinson’s disease. She told me that her mom was doing incredibly well after participating in what she thought was a research project about gait and balance. I was intrigued so I called Jenny’s mom, Doreen to find out more about this research. It turns out it wasn’t research at all but LSVT BIG, a program that has proven to be helpful for those living with PD. Doreen learned about LSVT BIG at the Unity Walk, an example of the resources that are available at the Walk.

Read on to learn about Doreen’s experience with LSVT BIG …

DoreenErasmus-blog-photo

Since being diagnosed with Parkinson’s there are several changes I have been forced to make in my daily life in order to cope with effects of this disease. The best decision I made was to participate in LSVT BIG, a program developed to specifically address the movement impairments for Parkinson’s patients.

LSVT BIG first caught my attention when I stopped by their booth at the Parkinson’s Unity walk in 2013. I spoke with a representative, gathered up pamphlets, and decided this was something that would be very beneficial to me. Unfortunately, the motivation to commit faded after the walk. Last year my neurologist reminded me of the program and suggested I give it a try. I resorted to my endless list of excuses – it was too far to drive, gas was too expensive, four days a week for six weeks was too much of a commitment, my dog would miss me…

Then one day something made me finally pick up the phone and call the Nayden Rehabilitation Clinic in Storrs, CT where LSVT was offered. I was invited to attend an informational session to learn more about the program and how it works. I attended the session and left knowing this was something I had to pursue. No more lame excuses!

After my first day, I knew the impact this would have on me. One of the best things about this program was working one-on-one with a trained LSVT therapist. I always felt somewhat intimidated and self-conscious joining exercise programs because sometimes I was the only Parkinson’s patient. I had a tendency for moving in the wrong direction and knocking people over. With LSVT, I didn’t have to worry about that. I was able to work with an amazingly wonderful physical therapist, Christina Colon-Somenza, who immediately made me feel comfortable. She motivated me and changed not only the way I move, but also the way I think about PD. The program is so simple – a combination of seven individual exercises and walking – yet it is so effective. The program also focuses on improving daily tasks like taking money out of my wallet and sliding into a booth at a restaurant. I was shown new techniques to accomplish these things much easier.

Ultimately, LSVT changes the way you think about moving. The focus is to take big steps, look up, and stand straight which are things my body no longer does naturally. LSVT showed me there is a way to change this. After four weeks in the program I watched myself walk down a corridor at the clinic. I saw someone in the mirror I hadn’t seen in a very long time. The woman I saw was walking straight and tall. She looked, dare I say, normal.

At my next follow-up appointment with my neurologist after I had completed LSVT, when it came time for her to observe my movement, I told her she better sit down because she won’t believe what she’s about to see. She watched me walk up and down the hall and when I finished she simply said, “Amazing.”

It has been months since I completed this program and I can still hear Christina’s voice in my head every day telling me to take big steps, look up, shoulders back! Instead of becoming frustrated and having to ask for help all the time, I can now accomplish much more by myself. For those of you out there reading this not sure if LSVT could benefit you, I say this: Get off your couch, stop making excuses (gas is cheap these days!), and find a LSVT therapist near you!  You have nothing to lose and oh so much to gain.

Doreen Erasmus
Deen’s Day Trippers


In speaking with Dr. Cynthia Fox, co-founder of LSVT, she provided the following list of questions she suggests you ask when interviewing a clinician for LSVT BIG or LSVT LOUD:

  • How many LSVT LOUD/LSVT BIG clients have you treated?
  • What are your typical outcomes?
  • Do you have a follow-up/maintenance plan for your clients?
  • Is your LSVT LOUD/LSVT BIG Certification current?
  • Do you deliver the gold standard dosage of LSVT LOUD/LSVT BIG?  (4 days a week for 4 weeks, individual 60 minute sessions, with daily homework and carryover assignments)

For more information on LSVT Global, call 1-888-438-5788 or visit their website www.lsvtglobal.com.

Lifelong Journey as a Care Partner

Friday, November 7th, 2014

by Edna Ball, Care Partner and Co-founder, Team Parkinson

Edna and John Ball

Edna and John Ball

When I was 11 years old my mother was diagnosed with Parkinson’s disease (PD) at the age of 48, and so began what was to become my life long journey as a care partner. My mother lived with PD for 37 years. I also married a man who after our 10 year anniversary was diagnosed with the same disease. My husband now has had PD for over 40 years.

When this journey first began the term for me, and thousands of others, was caregiver. In recent years the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.

Over all these years I have learned some valuable lessons. The most important is that open and honest communication is vital. None of us are mind readers, and it is crucial for both the care partner and the person with PD, to have the freedom to express themselves without fear of hurt feelings. Walking on eggshells all the time in fear of stressing the other out is even more stressful than getting feelings off one’s chest and then dealing with the issues at hand. And stress is bad for all concerned. Honesty, mixed with kindness and compassion, is key.

It is also extremely important to take care of your own physical, mental and emotional health so that you can be fully present in the care of your loved one. Sometimes that means taking a break from the day-to-day grind. And that in turn might mean asking for help. Asking for help when you need it, without guilt, is one of the smartest things you can do. Surround yourself with family and friends who can chip in when needed.

Educate yourself about the disease, participate in support groups but don’t go overboard and don’t let PD become an obsession that robs you of all the good things you can and should still enjoy. Read about the latest research up to a point, accompany your loved one on doctor’s visits, and keep a current list of medications with you. Do whatever is necessary to stay on top of things, to be prepared and thereby to reduce your own level of stress on a daily basis.

John-Edna

John Ball with wife and care partner, Edna — at the Parkinson’s Unity Walk representing Team Parkinson

But always remember that not everything in the health of your loved one is about Parkinson’s. There is the normal aging process that visits all of us, care partners included, and it’s good to remember that and not get bogged down thinking everything is the fault of PD. And remind your loved one of that too as you work together on this mutual path to a better and easier existence.

If you practice mutual respect and maintain a sense of humor, life with Parkinson’s disease will be easier. Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.

You can learn more about Edna Ball’s journey as a caregiver and her work with Team Parkinson, via Team Parkinson’s website team-parkinson.org.

Caring From a Distance

Thursday, November 6th, 2014

By Sara Beam, Caregiver and PUW Supporter/Volunteer

two-photos-one-image

Joan and Jack Beam (L); Jack Beam and daughter, Sara Beam (R)

My Dad, now 83, was diagnosed with Parkinson’s in his mid-60s. He has remained remarkably active, both physically and socially, despite a steady worsening of symptoms over the years, which Deep Brain Stimulation (DBS) surgery a few years ago helped improve for a time.  However, a major component of managing his disease well was the steadfast, strong support of my Mom as his caregiver.  That changed dramatically when she was diagnosed unexpectedly with stage 4 terminal cancer in August of last year.  We couldn’t replace her excellent care, but as her ability to help my Dad diminished, my brothers and I learned to work together from afar to care for the both of them.

While one of my brothers and I were able to make frequent visits to their home in North Carolina from Texas and New York, respectively, much had to be done remotely.  Frequent phone calls were critical to help coordinate needed support and both their medical appointments.  But, with my Mom’s memory damaged by her disease, and my Dad’s cognitive and memory issues exacerbated by the stress of the situation, more help was quickly needed.  My brother from Massachusetts and his wife looked into care agencies in North Carolina and found a good one through online resources, which my parents reluctantly and sparingly began to use.

My Dad had never learned how to use email, another thing that my Mom took care of for him.  But, we still needed to communicate with him quickly in written form to compensate for his memory issues.  The initial solution was giving them a fax machine, so I could send reminders of doctors’ appointments, flight schedules for visits, etc.  Later, we also started using remote computing, so that I could access my parents’ home computer from anywhere to print clear, large-print copies of documents for my Dad, whose eyesight had worsened significantly in the past year due to his Parkinson’s.  We automated the few remaining monthly payments that my Mom hadn’t already done, so my Dad didn’t need to start writing checks on a regular basis.  By setting up online access for their bank and credit cards, I was able to monitor their accounts from afar.

As my Mom’s condition worsened, we convinced my parents that they needed more help from professional caregivers.  By the time my Mom passed, my Dad had gotten used to the caregivers and was willing to keep them in place for ten hours a day.  But, it soon became apparent to him and us that living in the house without my mother’s care was too much for him, as he began to have more falls and his reliance on the professional caregivers grew.  After much research by my brother and his wife, my Dad decided he would move to an assisted living facility in Massachusetts.  In August, five months after my Mom’s passing, I drove him 850 miles to his new home, just a few minutes away from one of my brother’s home.  He would now get to live near his only grandchildren.  It’s rare that anyone skips their way happily in the door to assisted living and he’s still adjusting to life there, but he’s confident it was the right choice for him.

This guest post was written by Sara Beam, who has been a longstanding supporter of the Parkinson’s Unity Walk–especially as a volunteer on Walk Day.

Gayle’s Story (so far): A Care Partner’s Perspective

Wednesday, November 5th, 2014

A care partner’s perspective about the things you learn living a life with Parkinson’s disease

By David M. Maloney, Husband and Care Partner, PUW Team Nashville

Gayle-and-David-one-image

David and Gayle Maloney

My wife Gayle was diagnosed with Parkinson’s disease in 1998 – 37 years old, two young children, and a husband trying to be supportive.

I don’t know how I would react if I had been diagnosed with Parkinson’s disease but Gayle’s reaction was no surprise.  She met the disease with determination, optimism, courage, and grace.  She was determined to lead a normal life.  She was confident that a cure would be found.

For almost ten years, Gayle’s medications were managed and allowed her to lead a somewhat normal life.  But those meds that we had been told would stop working, did.  Not all at once and not all of the time.  Shortened length of effectiveness.  Unpredictable dose failures.  Or, just as difficult, medication side effects such as uncontrollable excessive movement called dyskinesia.  We were fortunate.  Gayle was a good candidate for Deep Brain Stimulation (DBS) surgery.  Almost twelve years to the day following her diagnosis, Gayle underwent bilateral DBS surgery.

To say the surgery was a success is an understatement.  It was life changing.  Gayle got her life back, but we know that the underlying disease is still progressing.  Without DBS, her life, our lives, would be much more difficult.

Parkinson’s disease is a progressive disease without a known cure.  Our life with Parkinson’s has also been progressive.  With Parkinson’s having been part of our life now for 16+ years, it is difficult to remember our life without it.  Our life and a life living with Parkinson’s disease are the same.

Initially, there is the shock of hearing that the person you love has a disease that does not have a cure.  You first want to learn everything possible about the disease – surely people are working on a cure.  They are, but a cure takes a long time.  You learn to accept setbacks and settle in for the long term.  You think about the future differently.  You have to have direct and honest discussions about doing things now versus waiting until a future where doing some things may not be possible.  You have these discussions in addition to all of things that all families face and you have to have them with a partner whose emotions have become a little more fragile.

You adjust by doing small things like going to matinee movies because your wife can’t stay awake in the evening.  You plan for travel differently because she can no longer drive any significant distance by herself.  You want to help your loved one.  You learn to balance your desire to help, to speed things up, with the person’s desire, sometime stubbornness, to be independent and do things for themselves regardless of how long it takes.

Following DBS surgery, Gayle’s speech became more slurred.  This, coupled with the soft tone associated with Parkinson’s, often makes it difficult to understand her.  We have an ongoing dialogue about my “selective hearing” and her speech.

You also discover that unlike a single entity that was the beneficiary of the wildly successful ALS ice bucket challenge this summer, that there really isn’t a single voice for Parkinson’s disease.  You wish there was a single national entity for focused attention.  The Parkinson’s Unity Walk and Parkinson’s Action Network come the closest to being that entity.

Finally, you realize that this is your life together.  All people and all families face difficulties in life.  Living with Parkinson’s disease is just one of the things that makes our life a little bit unique.  Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope.  You learn to appreciate all of the moments, both the large and small, of the life that you are living together.  You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.