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Finding, and Becoming, a Personal Trainer Specializing in Parkinson’s

personal trainer, guilt, Q&A

I received my Parkinson’s diagnosis five years ago. I fully intended to attack it head-on, starting with exercise. Parkinson’s is not for wimps. Dancing was an important part of my plan but I needed more.

The first step of my plan was to find a personal trainer. I went on a quest to find an experienced trainer with an understanding of Parkinson’s. Additionally, I needed someone who understood me. My research led me to a local community center that employed trainers who listed Parkinson’s disease as a specialty. Great. The first planning session was scheduled for that week.

First, the trainer reviewed my medical history with me. I was newly diagnosed, so my emotions were in overdrive and I was extremely guarded. Answering the questions that were not related to Parkinson’s was easy but then …

Trainer: “Do you have the shakes?”

Me: “Do you mean, do I tremor?”

Trainer: “No. I just call it the shakes.”

Really? The shakes? I was speechless, which is not an everyday occurrence. It was a small room so a quick escape was not feasible, but my mind left the building after question #1. The entire ordeal was only 20 minutes, but it left a lasting impression on me … the 45-year-old mom newly diagnosed with young-onset Parkinson’s.

The seed was planted. Could I be a personal trainer?

That very moment put me on the path to where I am today. I researched different programs and enlisted the help of a friend. Eventually, our Parkinson’s fitness program was up and running. We knew basic terms, including “tremor.” Initially, our program was PWRMoves! We added Rock Steady Boxing a year ago.

I never forgot that trainer who asked me if I had the “shakes.” (I guess I should thank him.) He planted the seed of my desire to earn a personal trainer certification. However, one thing held me back — the final exam. It intimidated me. Learning the material was not problematic, but the thought of going somewhere and taking a test terrified me. Ultimately, anxiety would hit and it would be game over. The right program was out there. I just needed to find it.

After keeping my toes in the water for years, I took the plunge and enrolled in an online course with ISSA. It was a perfect fit for me. The course fit my schedule and allowed me to work at my own pace. I also purchased a hardcopy of the training book; not an ebook but a real book with pages. It was exactly what I needed: a combination of the technology of an online course and the old-school approach of a hardcopy book.

Now I am the personal trainer and I still have a lot to learn. However, I passed Parkinson’s 101 for personal trainers — you tremor when your muscles are fatigued. You do not “have the shakes.” Understanding something so simple can make a world of difference for everyone.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Finding, and Becoming, a Personal Trainer Specializing in Parkinson’s appeared first on Parkinson’s News Today.

Let Go of the Guilt Quilt

guilt, Q&A

The feeling of guilt calls to mind the image of a patchwork quilt. Unlike a blanket which is one piece and often uniform in both color and pattern, the quilt is a blend of patches. The patches are all different, each varying in size and color. Some are larger while others are smaller and simply seem to connect the others. Some dominate the theme with loud colors and others are muted in the background. The feeling of guilt can be overwhelming and hard to relinquish, especially for a parent with young-onset Parkinson’s.

There is no reason for the guilt. It’s not rational thinking. My Parkinson’s was not the result of a poor decision or the consequence of a lifestyle choice. I did not choose Parkinson’s. It chose me. Was it genetic? Was it environmental? Maybe it was just bad luck. I may never know the answer but I do know it wasn’t my fault. That said, despite my best efforts, at times the guilt remains. However, it’s time to let it go entirely, or at least change the pattern and make a new quilt.

My kids didn’t sign up for this.

Post-diagnosis, I constantly worried about my Parkinson’s effect on my husband and three sons, concerned by the burden it may place on them in the future. The “burden on my family” patch was my guilt quilt’s dominant pattern. When you get married, you take vows and you stand by your spouse — for better or worse, in sickness and health. It’s part of the deal. You expect challenges.

However, your kids are a different story. As a parent, you spend your entire life protecting your child. What happens when you are given a life-changing diagnosis? How do you protect them from the invisible creeper that is slowly altering the patchwork of your life?

For me, the answer is “you can’t.” Life has changed over the last five years. I have gained a better understanding of how my boys make an effort to protect me. While that may be part of my husband’s job, protecting me is not in their job description. That’s not the way it is supposed to be, but that’s the way it is.

One would think that would make the guilt worse but it doesn’t. It changes the pattern. The patch is smaller and the color is fading. My relationships with all my boys have changed. I have come to appreciate each one of them for their efforts to support me. I’m in the fight of my life and they each have a unique role in it.

The new quilt.

My favorite banter has become, “Mom, are you good?”

“Yes, I’m good.”

It is that simple. I’m good. They’re good. “We’re good.” A new patch, a new pattern, and a new quilt.

To sum it up, my youngest son said, “If you would have told me five years ago that you would be doing what you are doing now, I would have called you crazy.”

As parents with young-onset Parkinson’s, we have a long life ahead of us. Worry comes with the job, but guilt does not. The time has come for us to design a new pattern and make a new quilt. We design the patches; Parkinson’s doesn’t.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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The Virus Has Forced Us into a Virtual World

Q&A

How will we describe the “Virus of 2020” to future generations? Should we refer to it as the virus that boosted online platforms?

An online platform allows people to use the internet and other networked sites like social media to exchange information. Yes, the internet and social media platforms can be useful, but they also can hinder efforts to educate us. It is important to know which online sites, sources, and messages are trustworthy and credible and which are not.

While we are in self-quarantine, online coverage is available around the clock. It’s almost as if there is too much information at our disposal. It’s complex, and we can’t process it quickly enough. When my Parkinson’s brain checks out, I am done. But I am guessing that it’s not just the Parkie brain that is currently on overload.

An online post can go viral for many reasons, but the post might not be credible or factual. Something going viral can be detrimental to the efforts of those in charge of the crisis we are facing. While it is important to stay informed and educate yourself, it is equally important to vet your sources.

When I attended coach training for Rock Steady Boxing, we talked about people with neurological diseases other than Parkinson’s. They may ask to be part of our classes, so the instructor urged us to, “Know what you don’t know. ”

Well, I don’t know much about this virus and COVID-19, the disease it causes. Along with the rest of the world, I am trying to process the ever-changing information in the global environment. However, I do know one thing: We will stay home. We may run low on everyday items, but we will be fine, and we have plenty of toilet paper.

We stay home, but how do we remain connected?

Social media is a potential asset during these challenging times. It can be a valuable tool if used properly. Information and communication can be provided to people who have become isolated from our community. It’s important to find creative ways to reach out to others, particularly those who live alone. Consider being a “buddy” and check in on someone each day via phone, text, or through social media.

We have entered a period of social distancing, and it’s filled with uncertainties, including a time frame for when it will end. Our lives are on hold while researchers and healthcare workers attempt to flatten the curve and slow down the spread of the virus. We need to make a conscious effort to support one another in a productive manner, especially those who suffer from depression and anxiety and those who are isolated.

Share what you know. We each have different talents and interests. It’s time to get creative and share these gifts with others. Do you cook and have a favorite recipe? Start a recipe group. Do you like to read? Start an online book club. Do you run a support group? Convert it to an online group.

Be creative, but please be positive.

I will share one thing I know: exercise. Going without exercise for weeks is not beneficial for anyone, especially a person with Parkinson’s. Exercise is like medicine.

To exercise, you may have to think outside the box. Use an online platform such as exercise videos, and be sure to include some cognitive exercises in the mix.

Please exercise with caution, and remember: You can always put on some good music and dance like no one is watching!

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Interviewing My Husband Five Years After My Parkinson’s Diagnosis

Q&A

When you’re young, you think you have it all figured out. The future is limitless.

I was no exception. My life was moving right along when, all of a sudden, it wasn’t. I was diagnosed with young-onset Parkinson’s, and my husband and I found ourselves on a different journey, one we never could have imagined. But, for the last five years, that journey has been ours, for better or worse.

For Parkinson’s Awareness Month in April, I want to share our story by interviewing my husband, Mike.

Lori: It’s been five years since my diagnosis. How did you envision our life at this moment?

Mike: At the time of the diagnosis, I had no idea. Neither of us knew much about Parkinson’s. We tried to wrap our heads around what this meant. Early on, there was a lot of emotion, a lot of crying, a lot of hugging.

At the beginning, I felt that five years down the road, you would still be OK. You were otherwise healthy when diagnosed, you were young for Parkinson’s, so I couldn’t imagine a scenario where you would progress quickly. You, on the other hand, assumed you would progress rapidly. As a result, we spent a lot of time reconciling these two beliefs.

One thing I did not envision is that we would take ballroom dancing lessons and continue taking them over this five-year period. Who knew?

I feel our life is two chapters — life before Parkinson’s and life with Parkinson’s. How would you write an introduction to each chapter?

Before Parkinson’s: The following is the story of our lives. Getting married, raising three sons, working, playing, and experiencing all of those “normal” joys of growing up and going through life.

With Parkinson’s: Hang on! It’s going to be a little bumpy here in the beginning, but it gets a little smoother as we learn to adapt. There are also a lot of “normal” life-changing events that have occurred, which either masked the reality of Parkinson’s, or magnified it. Depending on the event, it could be either, or both.

Our kids are growing up, graduating, and “adulting.” These are significant events even without Parkinson’s, and are emotional for parents, so it’s hard to gauge how much of the emotion comes from the normalcy of these events, and how much they were magnified by Parkinson’s.

Parkinson’s makes me feel helpless at times. Do you ever feel the same way?

It did at the beginning, because of the unknowns. I would tell you that it’s going to be all right, but what did I know — this was unchartered territory for us. However, now I don’t feel helpless.

I see how you attacked this disease once the shock of the diagnosis wore off. You researched Parkinson’s, you learned that exercise was a powerful tool, and you took this to the next level. I am extremely proud of the way you have embraced exercise, not just for yourself, but also for others. You have been active in becoming certified in Parkinson’s-specific programs so you could teach others. This purpose has been important for your own well-being, and quite frankly, I’m a little scared of you now!

We face a future of unknowns. How has my diagnosis changed our lives?

Parkinson’s has changed our lives, but there are many unknowns still to come. We have all learned how to deal with adversity. Not theoretical adversity, but real-life stuff. You can’t prepare for this, but you can definitely learn from it.

Parkinson’s has brought us closer. It obviously is not something that either of us would have wished for, but it’s here. And so far, it has been different, but not all bad.

What advice would you give the partner of someone with newly diagnosed young-onset Parkinson’s?

Be supportive and understanding. Be there to comfort when needed. And be there to give a little push when needed. Sometimes it’s difficult to know which approach is most appropriate at the time, but you will figure it out. Most important, hang in there and continue to love (both of you).

What do you think we have gained from my Parkinson’s experience as a family?

I think we are closer as a family. It seems like this impacted our sons more than we knew. But as time passed, and everyone understood that Parkinson’s is not a death sentence, we all came to terms with it and realized this is the “new normal.”

Your father made a comment shortly after you were diagnosed, and I will never forget it. He said, “So you shake a little. … We still love you.” It’s maybe not the most politically correct thing to say, but I think it hits the nail on the head.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Interviewing My Husband Five Years After My Parkinson’s Diagnosis appeared first on Parkinson’s News Today.

Redefining My Honeymoon Phase as My ‘New Normal’

clinical studies

This December marked the fifth anniversary of my diagnosis with Parkinson’s disease. Technically, I am still in the honeymoon phase — the first three to eight years of the Parkinson’s journey. Life is still pretty normal. Then again, what is normal?

Normal now consists of inconvenient symptoms including tremors, low blood pressure, rigidity, and anxiety. Oh, and lots of medicine. Taking numerous medications daily was never normal but it is now part of my daily routine, along with exercise. Does my evolving normal mean my honeymoon phase is nearing its end? Maybe. Maybe not. I am choosing to redefine my honeymoon phase as my “new normal.” Life is good, but it’s also different. I have moved from newly diagnosed to patiently awaiting a cure.

‘New normal’ puts us in the Cure-for-Parkinson’s Waiting Room. What should we do?

Keep moving and don’t stop!

My goal is to keep others moving alongside me. It’s easy to get comfortable and coast along, but that won’t get the job done in fighting this disease. Staying consistent and living well with Parkinson’s isn’t easy. It’s especially hard to do it alone. One of the most important tactics in this fight is finding others who share the same journey. Parkinson’s warriors and our coaches look out for one another. Parkinson’s comes at us full force and head-on every day. Together, we push back.

You can educate yourself and participate in the search for a cure through clinical studies, especially early in your diagnosis. The Michael J. Fox Foundation’s Fox Trial Finder is a tool that helps match volunteers with available clinical studies. There are two main types of clinical studies — observational studies and clinical trials. Observational studies involve tracking and collecting data for a better understanding of Parkinson’s. Clinical trials test promising drugs and other therapies.

Although many studies are done in a clinical setting, others are not. One long-term research effort is the Fox Insight study. It is completed online and done from home. Some studies are enjoyable. For example, I participated in a study in which I took a series of guitar lessons over six weeks along with others who have Parkinson’s. Researchers examined the effect of the lessons on quality of life, upper motor function, mood, and cognition. Yes, it was fun and we all became friends. However, it was very challenging. More importantly, researchers received valuable data.

There is a study for everyone!

Ultimately, a cure will be found through us — the people facing the disease every day.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Redefining My Honeymoon Phase as My ‘New Normal’ appeared first on Parkinson’s News Today.

Weighted Blankets Are Popular Sleep Aids, So I Bought Two

weighted blanket

Sleep.

It used to be something that came to me as natural as breathing. Now, it eludes me, and I struggle to get the rest my body needs.

My body is exhausted, but my mind does not agree. I think about what I should have done that day but didn’t get to and what I need to do tomorrow. Something always keeps the hamster running on the wheel.

Eventually, my mind cooperates, but sometimes it is too late. My legs wake up, they “jig and jive,” and anxiety follows. Sleep and anxiety are not friends. They do not peacefully coexist.

After reading good things about sleep and weighted blankets, I purchased one. Weighted blankets are promoted as having calming and beneficial effects for ADHD, autism, and many other conditions including Parkinson’s. My hope was to find relief for my restless legs and the anxiety that comes with them.

If you are unfamiliar with weighted blankets, they are weighted with glass beads, plastic pellets, or other fillers. The blanket provides gentle pressure over your body. In a way, it feels like a hug. The effect can be both comforting and calming.

The concept sounds simple. However, I quickly discovered a few things with my first blanket that led to the purchase of my second blanket.

All weighted blankets are not created equal and they are not “one size fits all.”

So, how do you know which blanket will work best for you?

Let’s start with weight. Experts recommend a blanket that is approximately 10 percent of your body weight. Adjust the weight to feel comfortable. For example, if you find it difficult to roll over or if you feel trapped, a lighter blanket may be better for you.

Different designs also are available. The design and stitching are important. Look for a blanket designed with beads sewn into separate sections. This will distribute the weight evenly.

Some blankets, like my first one, appear to have separate sections but they are not sewn shut. The beads and the weight become concentrated in one area. The blanket becomes difficult to maneuver and uncomfortable. Like me, you will find yourself buying a second blanket.

Once you find the right blanket, it can be a great sleeping aid for the entire night or for a power nap. However, be patient. It takes some time to adjust to the weight.

In the beginning, I only covered my legs. Each night, I pulled the blanket a little higher to cover more of my body. I was completely under the blanket in a few days. I was comfortable and benefiting from the gentle pressure it provided. The blanket has become an essential tool in my Parkinson’s toolbox.

From my personal experience, there is one last piece of advice worth mentioning. Stand next to the bed, spread out the blanket, crawl in, and cover up. Attempting to spread out the blanket while sitting in bed may result with both you and the blanket on the floor.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Be the Dancer and Be the Artist

dance

Would you — a person with Parkinson’s — ever call yourself a dancer? An artist? Graceful? Well, it’s possible. Be open to the idea. You may be surprised. I certainly was.

Recently, I met David Leventhal, the program director of Dance for PD. The program brings together trained dancers who are experts at moving alongside people with Parkinson’s who face movement challenges. Elements of dance addressing balance, gait, coordination, flexibility, isolation, depression, and other challenges of Parkinson’s are neatly interwoven throughout the entire class experience.

After a wonderful adventure on the subway, I arrived at the studios of the Mark Morris Dance Group in Brooklyn, New York, and waited for class to begin. I had seen videos of the program. I had also watched a documentary called “Capturing Grace,” which featured many of the dancers with Parkinson’s. Yes, dancers.

I would like to call myself a dancer. Thanks to weekly dance lessons with my husband, I am familiar with ballroom dancing, line dancing, etc. However, to say I am an artistic dancer is really stretching it. Hoping I would not draw attention to myself in the class, I settled on a seat near the back.

“When the dance class is going on, there are no patients … only dancers.” – Reggie, dancer, “Capturing Grace.”

The theme of the class was one of clay or dough. We reached, pulled, and used many variations of movement. With each movement, I was realizing that this program targeted Parkinson’s while also teaching artistry and grace.

Some movements were big and made with amplitude while others were intentionally small. There were also variations in speed — some were fast, others were slow. However, at the same time, all of our movements made a statement. We were moving with a purpose. As the pianist played the music, there were crescendos and decrescendos. Our bodies responded with movements that were unintentionally choreographed perfectly.

Our dough became bread through a series of movements. We tore our imaginary bread and passed it to others around the room in a way that reflected how we felt. There were big, sweeping movements from one person who in turn gently reached and passed it to the next.

Next, it was time to move around the room during a segment using body language to invite each other to dance, and then it was time to waltz. I was excited. I knew how to waltz. However, there was an added element of pushing and pulling the hands and arms of my partner. This introduced an element of balance and being in touch with my body to have a connection with my partner.

Graceful is not a word I would use to describe myself. Yet, I found myself gliding, switching partners, and waltzing around the room. Together, the group transformed into a graceful, moving work of art.

We ended the class in a circle, passing our dough into the hands of the person beside us. Each pass was different and had its own expression. I was last to pass my dough to the teacher, David Leventhal. It was a pass of gratitude and thankfulness. I spent an hour with people I had never met but shared their experience of dancing as art. It was obvious that our Parkinson’s didn’t matter. It made each one of us unique and that was reflected in our movements and the art we created.

“One thing I’ve come to believe about Parkinson’s is that it’s a disease of subtraction. It takes things from you one by one. And one of the many things I learned from the people in the class is that if you are confronted with a disease of subtraction, you better believe in addition. You better start adding things back into your life.”Dave Iverson, producer, “Capturing Grace.”

I do believe that Parkinson’s can add things to life. Good things. You may have to look for them but they are out there somewhere. Like the dancers I met in class, for me dance has been one addition to offset the many subtractions.

What will be yours?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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What I Learned from Attending a Parkinson’s Symposium

symposium

I recently attended a symposium titled “Shaping the Future” at the University of Delaware. The event, organized by the Johns Hopkins Udall Center, was patient-oriented, so rather than their peers, the expert speakers were addressing people with Parkinson’s.

Looking around the room, I noticed that the audience included people of various ages and degrees of progression. However, we all had one thing in common: hope for a brighter future. I came prepared with my iPad, ready to learn and take notes for this column.

Presentations covered a wide range of subjects, including gut models, cognitive and psychiatric aspects, disease-modifying versus symptomatic therapy, nutrition, pathophysiology, biomarkers, and genetic mutations.

The highlights

  • Biomarkers are like dominoes — a “cascade” leads to cell death. Remove a domino and stop the process. This video explains the concept.
  • You may have heard of alpha-synuclein. I learned that it’s a “bad protein” and potential biomarker when “misfolded” in the development of Parkinson’s.
  • The impact of depression on quality of life in those with Parkinson’s is almost twice the impact of motor impairments.
  • Protein and L-dopa compete for the same receptor in the digestive tract to get into the blood and the brain.
  • Exercise can be a disease-modifying therapy. This presentation looked at a 2017 study that used the Unified Parkinson’s Disease Rating Scale. It found that Parkinson’s patients who exercised at high intensity three times a week for six months had no progression compared with a moderate exercise group whose disease worsened by 1.5 points and a no-exercise group who had a three-point decline.

These are my takeaways from the symposium. If you’d like to explore further, the slide presentations are available here.

Symposiums may not be for everyone; the content can be clinical and hard to understand. However, we should be encouraged by and grateful for the fantastic researchers who are working on finding new treatments and a cure for this disease.

Above all, we should be hopeful that their collective efforts may identify the “dominoes.”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Parkinson’s Changes the Rules: It’s OK to Ask for Help

rules

We all have a fundamental desire to help our loved ones, and this is particularly true of those of us with early-onset Parkinson’s disease. Life moves along, and we try to advance with it. We are used to taking care of our responsibilities. But when we have Parkinson’s, the rules change.

I was trying to accomplish many things and not doing any of them well. I felt defeated in my job, and as a mom, daughter, and wife. I didn’t know how to step back and recognize my limitations. I had been taking care of everything for over 25 years and I loved it.

Now I find myself in unfamiliar territory. It may be a natural part of getting older or my progression, but I am not the same person. I can’t do everything that I could in the past. And accepting my limitations is not easy.

When my doctor suggested that I see a psychologist, my immediate reaction was, “No, I don’t need to.” However, she was right. I did need therapy, at least in the short term. While it is not for everyone, therapy has been beneficial when I find myself struggling. My therapist can make me aware of things that my friends, family, and others who are part of my everyday routine can’t see in me.

Talking with a professional provides a different perspective. And sometimes, having a fresh look at your situation can help you to get to where you want to be. Unfortunately, therapy is not always available, and people often avoid seeking this kind of help because of the stigma attached.

New rules

While my approach is still a work in progress, I have developed some new rules. I am sure that I will add more and you may have some rules of your own. With the busy holiday season approaching, you may want to give these a try:

  • You don’t need to take care of everything.
  • Know when to seek support.
  • It’s OK to ask for assistance.
  • Allow others to help.

Parkinson’s makes us feel helpless at times. However, it’s not just about us. What about the people in our lives? Do they feel the same way? Maybe playing by the new rules and allowing them to help us will make them feel more useful. We can see our acceptance of their help as a gift to them rather than a burden — something as simple as opening a car door can make all the difference.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Parkinson’s Disease and the Uninvited Guest

parenting

When Parkinson’s entered my life, it brought an uninvited guest along with it: Parkinson’s me.

Parkinson’s me follows me everywhere and is part of everything I do. Most of the time, she quietly stays in the background. Other times, she is overwhelming, to the point where putting on my brave face becomes exhausting. Until recently, I didn’t always like Parkinson’s me, but I’m trying to understand her instead of simply being afraid of her.

Parents with early onset Parkinson’s are in the busiest times of their lives. Any situation can become stressful and trigger symptoms. Despite my best efforts, Parkinson’s me tends to arrive front and center. It’s not uncommon for her to have a completely irrational response to things. Indeed, anxiety and Parkinson’s are good friends often seen together. Their relationship manifests as a nonmotor symptom that, when overlooked, can be debilitating, frustrating, and embarrassing.

I feel helpless when Parkinson’s affects my ability to parent my child. Parkinson’s me always seems to arrive when my kid needs me — at tryouts, auditions, school functions, and other crowded events. For example, Parkinson’s me accompanied my son to a crowded audition, complete with tremors and a feeling of panic. My son put his hands on my shoulders and said, “Mom, I’ve got this. You can go.”

I was embarrassed and felt horrible for leaving, but he was right to send Parkinson’s me on her way. Rather than being embarrassed by what I could not do as a parent, I should have been proud of my son’s confidence and his ability to handle this situation and many others.

If we’re open about Parkinson’s and willing to talk to them about our diagnosis, kids are incredibly perceptive and resilient. In my opinion, we should help them understand Parkinson’s so they are not afraid of it.

Ultimately, we are still their parents. We just happen to have Parkinson’s.

If you find yourself embarrassed by your disease as a parent, stop and ask yourself the following questions: Did you get the job done? Was your kid strong and confident? The answers will be “yes” because you are a parent. Your kid knows that you don’t quit.

You may stumble and fall, but you will always get up. They are confident that you will be there for them, which is a direct result of your efforts, despite the challenges that come with Parkinson’s.

It is not easy to admit, but Parkinson’s me actually can get the job done. The job is just done differently, and that’s OK.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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