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Seeking Relief, but Stuck Between a Rock and a Hard Place

Why do I feel stuck?

As my Parkinson’s disease (PD) symptoms worsen, my desperation to find relief increases. I constantly tell myself that if my symptoms don’t progress from where they are now, I can handle my dealt cards. However, I feel my ability to stay strong will be increasingly challenged as time goes on.

Between a rock and a hard place

The idiom “between a rock and a hard place” is an American manifestation of a phrase found in ancient Greek mythology. In Homer’s “Odyssey,” Odysseus must pass between Charybdis, a treacherous whirlpool, and Scylla, a man-eating monster on a cliff. My situation is not as dire as facing Charybdis or Scylla. However, at times, I do feel that way.

When I consider my potential supplements, I feel stuck between a rock and a hard place. I am so overwhelmed with all the treatment and “cure” options (medical as well as naturally occurring) available for PD. They come to me via emails from well-intentioned friends, social media, and postings to my PD columns and blogs.

Although I continue to do the holistic things within my control to battle this disease (mainly gluten-free and vegan diets as well as regularly exercising, reducing stress levels, and getting plentiful sleep), I don’t think these actions alone are enough to battle this disease.

Taking prescription medications (my Scylla) goes against my grain. I also do not want to load up on vitamins and herbs (my Charybdis) since I feel these supplements end up passing right through me without having any impact on my symptoms. They drain my wallet, and I end up hopelessly wishing each item will be my miracle remedy. I’ve intended to avoid medications and other forms of treatment by continuing with my current diet and exercise regimen. However, this no longer appears to be an option.

What about medications?

While I do use Sinemet (carbidopa-levodopa) and Neupro (rotigotine), I am concerned about the long-term effects of these medicines on my body. I am also not a fan of Big Pharma remedies. I do not believe it is in the best interests of pharmaceutical companies to find a cure for PD because their monthly revenue streams would collapse if patients no longer needed to take daily medications to keep symptoms at bay.

Even with a prescription drug plan, medication costs are astronomical. Although some pharmaceutical companies may offer aid to help cover the cost of their medications, it is often short-term help. In September, a Sinemet shortage happened in the United Kingdom and other countries, which added to the stress of prescription medication reliance.

‘Naturally occurring’ remedies?

Many have jumped on cure bandwagons, giving so many of us suffering individuals false hope. I believe most of these claims are from shysters and snake oil salespeople without scruples or compassion. These companies and individuals post such convincing testimonials about how some obscure herbal remedy or supplement has cured their PD. These frequently appear on my PD blogs and articles.

I have also read articles that I believe come from valid sources concerning the efficacy of the following treatments:

I tried each of the above individually, and none has resulted in any discernible symptom relief.

There are so many challenges when trying to decide on “naturally occurring” supplements to take. Should it be taken orally? If so, in capsule or liquid form? What about intravenous? Which brand to choose? All may not have good quality control, so who do I trust? Such is the dilemma one faces when choosing the “naturally occurring” path.

Other options?

I saw a TV commercial for a local practitioner offering therapy for PD using one’s own stem cells. Their website had a compelling video of a patient’s testimonial on how much this treatment had helped him. The cost? $10,000. If this treatment was guaranteed to help my symptoms or stop my progression, I would beg, borrow, and steal to come up with the $10,000 to do it. Since there are no guarantees, this option is a nonstarter.

Stuck in the middle

PD symptoms vary greatly from one patient to another, and certain treatments will work for some while not for others. As such, like many others with PD, I am still searching for that elusive miracle that will stop the disease in its tracks and allow me to feel normal again.

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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 Seeking Relief, but Stuck Between a Rock and a Hard Place appeared first on Parkinson’s News Today.

Arranging for My Brain Donation Was an Arduous Process

brain donation

Why is there no cure for PD?

In my mind, there are several potential reasons there is no cure for Parkinson’s disease (PD). The brain is an extremely complex organ and there is no known definitive cause for the disease. Each PD diagnosis is unique, patients suffer different symptoms and different rates of disease progression, and certain remedies work for some but not for others. Is there any wonder why there is not yet a cure for PD and why nothing currently exists to slow its progression?

How can I help?

I do not believe there will be a cure in my lifetime. However, I want to be able to do what I can to help so that others diagnosed with PD in the future will have some hope. Other than participating in clinical trials and research studies, there is one other option I found that may help those diagnosed with PD in the future. I have arranged to donate my brain for research. Brain donations give researchers the chance to understand PD better. This will facilitate new treatments while also helping to increase the odds of finding a cure.

Please note that brain donation is not considered part of organ donation and must be handled separately.

To donate or not to donate?

I give you fair warning: My experience in researching and processing the paperwork to donate my brain was extremely frustrating. It was also a huge emotional roller coaster, and more than once, I was tempted to give up. It took almost three months from the time I started investigating my options until I received final confirmation that my request will be honored.

I believe we all struggle with accepting our mortality, PD-afflicted or not. I don’t know of anyone who looks forward to planning for their demise and what happens after, especially when it comes to things like organ donation and cremation. What if I need my body and all its parts in the afterlife? This is a thought that crossed my mind many times while I was in a holding pattern waiting for the donation organization to get back to me. Only focusing on my end goal of donating my brain with the intent of helping others kept me from quitting.

The process

After doing a Google search on brain donation, my first stop was the Brain Support Network website.

Question 3.7 of their FAQs indicated the following:

“… New York makes brain donation difficult because state law requires that the brain be procured at a hospital. No New York hospitals are willing to plan in advance for brain donation.”

So, it seems that living in New York adds another layer of complexity when you want to donate your brain.

I found my way to a site that lists the six U.S.-based regional brain banks, one of which was Mount Sinai Hospital in Manhattan. I clicked on their website and finally discovered the right place! There, I found contact info and forms to download.

Unfortunately, getting someone to confirm that my paperwork was received and processed was a long, arduous process. I wanted to ensure that all was taken care of so my loved ones would not be left wondering what my wishes were and how to accomplish them after I die.

My mind was finally put at ease when I received my formal donor card in the mail. Now, I can forget about the dilemma of having a brainless body in the hereafter.

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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 Arranging for My Brain Donation Was an Arduous Process appeared first on Parkinson’s News Today.

Other Things Lewy Bodies Might Do to Our Brains

Lewy bodies

Editor’s note: This column discusses suicide.

Pivotal events in my life have piqued my interest in Lewy bodies. The first event was on March 15, 2015, when my life partner, Steve, killed himself. The second was my diagnosis of Parkinson’s disease in November 2015.

My fascination with Lewy bodies (I’ll define them in a bit) began in August 2016 when I watched a documentary called “Autopsy: The Last Hours of Robin Williams.” In this film, forensic pathologist  Richard Shepherd, MD investigated what might have driven Robin to suicide in August 2014. A few months before he died, the beloved comedian and actor had been diagnosed with Parkinson’s.

What might Steve and Robin have in common?

Both Steve and Robin suffered from depression, yet both were supremely talented men with the ability to make so many people happy. To many, it appeared as if they both had lives full of promise ahead of them. According to the documentary, Robin was at a crossroads in his career. Steve also was at a crossroads in his life, trying to sell the business he had built and grown for more than 20 years. The film implied that Robin may have turned to drugs and alcohol to feel better and mask his depression. I believe Steve turned to endurance sports much of his life to accomplish the same. Steve was an 18-time Ironman triathlete finisher, which entails 2.4 miles of swimming, 112 miles of cycling, and 26.2 miles of running.

In my mind, their lives and tragic endings have so much in common.

What are Lewy bodies?

Lewy bodies are abnormal deposits of a protein called alpha-synuclein. These deposits can change how a person feels, thinks, moves, and acts. Lewy bodies can be found in an area of the brain stem where they deplete dopamine, causing Parkinson’s symptoms. There also is a disease called Lewy body dementia, in which these abnormal proteins spread to other areas of the brain. An affected person may become anxious and paranoid. Their decision-making can become impaired. Lewy body dementia can be definitively diagnosed only by a postmortem autopsy.

What was the result of Robin’s autopsy?

According to Shepherd, Robin’s autopsy confirmed the presence of Lewy bodies throughout his brain. Shepherd interviewed the Williams family in an effort to determine Robin’s state of mind prior to his suicide. Robin’s loved ones said he showed signs of paranoia. Shepherd concluded that Robin had undiagnosed Lewy body dementia and that it was this disease that drove him to take his own life.

Steve did not have an autopsy. In many states, if the cause of death is apparent, as it was with Steve, an autopsy is not automatically performed. Steve, like Robin, suffered from depression, and he spiraled downward quickly starting in 2014. A few weeks before he died, Steve expressed to me that he was afraid, but he could not, or would not, articulate why. He was my rock, my Ironman, and he never had been afraid of anything before.

I am not a medical professional, and I wrote this column to inspire conversation about undiagnosed Lewy body dementia as a possible cause of suicide, as Shepherd concluded in the case of Robin Williams.

What can we learn from Robin’s death?

I often wonder if brain autopsies should be routinely performed and analyzed for the presence of Lewy bodies in cases of suicide. Obviously, there are emotional considerations for the families and costs involved, but perhaps the knowledge learned from these autopsies may help others.

Maybe undiagnosed Lewy body dementia is more prevalent than we think, especially when suicide is the obvious cause of death.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 800-273-8255 or visit suicidepreventionlifeline.org.

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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 Other Things Lewy Bodies Might Do to Our Brains appeared first on Parkinson’s News Today.

Finding Balance with Medications

balance

What is my strategy?

I plan to take Parkinson’s disease (PD) medications as prescribed to get me to a point where I can function well and really push hard in my exercise. Then, I hope that a combination of exercise, diet, meditation, yoga, and massage will help me to deal with my PD progression and symptoms.

Currently, I take Sinemet (carbidopa-levodopa) 25/100, two tablets, three times per day. With my doctor’s guidance, I am weaning off a daily 4 mg Neupro patch. Sinemet has alleviated my internal tremors. However, I am still extremely fatigued all of the time.

Do I really believe the medications are helping?

I have never had any “aha!” moments as a result of taking medications. It was never like “wow, I feel so much better now.” I don’t experience the “off time” that some have when the meds are wearing off shortly before the next dosage is due. So, I question how much the medications are really helping me.

Why do I want to reduce or halt my PD medications?

Opioids target the brain’s reward system by flooding the circuit with dopamine. In the late 1990s, pharmaceutical companies reassured the medical community that patients would not become addicted to prescription opioid-based pain relievers. They were wrong — there is currently an opioid overdose crisis in the U.S.

Although opioids get more media attention, abuse of benzodiazepines (benzos) is equally rampant. Benzos create surges of dopamine in the body. Since their introduction in the 1960s, this class of medications, which includes Valium (diazepam), Ativan (lorazepam), and Xanax (alprazolam), have been widely prescribed to treat anxiety and insomnia, alcohol withdrawal, and other conditions. These medications must be prescribed with caution because they can be addictive.

Levodopa, a component of Sinemet, may improve PD symptoms because it causes the body to make more dopamine. Neupro (rotigotine) patches work by delivering the dopamine agonist rotigotine through the skin directly into the bloodstream. Rotigotine stimulates dopamine receptors in the brain. This, in turn, mimics the action of dopamine, which is found in lower-than-normal levels in the brains of Parkinson’s disease patients.

My conclusion

From my simplistic, high-level view, I see a common denominator (dopamine) in the three categories of the medications mentioned above. Even though my brain may not be functioning properly due to PD, taking drugs that impact the brain does not sit well with me.

What will be said about PD medications in the future? I am not sure I want to find out. This is why I am choosing to wean off as many of the PD drugs that I can. I want to continue to seek balance and to pursue my more holistic approach to diet and exercise to tame the PD dragon.

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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 Balance with Medications appeared first on Parkinson’s News Today.

Welcome to My Pity Party

Today began with a pity party and I had to take out the hats.
Like most people with Parkinson’s (PwP), our days — even our hours and minutes — are a roller coaster ride of highs and lows. My day started extremely low, and my pity party began as soon as I shakily got out of bed. I was totally fatigued even though I’d had a good night’s sleep.
What is a pity party?
In 2007, I battled tonsil cancer, and Steve, my late life partner, was by my side at the time with his steadfast support. Critical to my healing and recovery was Steve’s ability to help me keep my sense of humor. At one very low point during radiation treatment, I was whining about my pain, and Steve said, “Do you want me to get the hats?” I asked, “What hats?” Steve replied, “Hats for the pity party.” We both laughed so hard. From that moment on, I knew I would survive cancer.
I bought some party hats that we frequently brought out whenever one of us was having a pity party. The hats never failed to bring a smile to our faces.
Why was I having a pity party today?
As I struggled to get dressed this morning, my sports bra was not cooperating. I had to battle to put it on, and I broke into tears of frustration when I realized I’d put it on inside out. Only PwP could truly understand the despair over an experience like this. One would later tell me she would have left it inside out. I will file these words of wisdom for the next time.
Next, I had no confidence in my ability to move without knocking things over or bumping into furniture. I was depressed and apathetic, and I was not feeling motivated to go to Rock Steady Boxing (RSB). Then, I tried to organize some paperwork into piles, and I was dumbfounded! I could not figure out how to do this, so I suspect my cognitive skills are starting to fail me. My disease is progressing.
How did I handle this setback?
Almost as if Steve were whispering in my ear, I realized I needed to put away the pity party hats and get on with my day. I needed to go on autopilot to head to RSB class. If I thought about it too much, I would not have gone since I knew it would be a tough workout.
Why was this class different?
This week marks the one-year anniversary of when RSB was first offered in Sag Harbor, New York. At the start of each class, as is her custom, Sensei Michelle has both volunteers and participants gather in a circle, and she asks each of us her question of the day. This is so we all get to know each other better. These questions can be something like “What is your favorite movie?” or “What did you do this holiday weekend?”
What was the question of the day?
Today, Sensei Michelle asked us to reflect on what RSB means

Source: Parkinson's News Today

Complacency Has No Place in My Battle

Third in a series. Read parts one and two.
Complacency setting in
“Complacency is a continuous struggle that we all have to fight.” –Jack Nicklaus
It has been about a year since I started Rock Steady Boxing (RSB) classes. It has been a great journey filled with many triumphs, and yes, a few meltdowns. I had started to become complacent and overconfident in my abilities. I experienced this complacency in the past, when I used to dance. Whenever I took a dance class from a different instructor, I sometimes struggled with their style of choreography. My body was so used to working with my previous teacher week after week. Their dance moves came to me so naturally. Just because I studied dance for many years did not imply that I would quickly learn new and different ways to use my body. I had become complacent.
Recently, I took an RSB class that reminded me of my dancing days’ complacency. It was a good reminder; a lesson in humility.
A cognitive challenge
Coach Michelle, my teacher, took the week off. I wanted to continue my streak of attending class every week, so I went to another location to take a class from a different RSB teacher, Coach Seth. Coaches Michelle and Seth have unique teaching styles. The RSB organization provides a focus each week, but coaches may use different drills to support that theme. The RSB focus for the week was footwork agility.
We did a drill I had never done before, and unsurprisingly, I failed miserably. My processing speed to get my feet to quickly perform the footwork drill was definitely impaired. People in the class thought I was moving fast, but I knew my accuracy was poor. My previous dance background honed my ability to learn choreography, but Parkinson’s disease (PD) has dampened this skill. I am a perfectionist, and so I felt that I was not up to par in drill performance. My neurologist reminds me I used to go at 85 MPH and now, with PD, my speed is closer 55 MPH. Of course, this does not sit well with me. I want to be speedy with accuracy!
What lessons do I take away from this class?
That class humbled me. I should not set the bar so high with my performance. I need to be kinder to myself. I am no longer the dancer I used to be, and I must acknowledge that reality. I can’t rest on my laurels or let my guard down when battling this disease.
“We shall have no better conditions in the future if we are satisfied with all those which we have at present.” –Thomas Edison
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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

Source: Parkinson's News Today

My Rock Steady Boxing Journey Continues

Rock Steady Boxing

In part two of a series, columnist Jean Mellano’s Rock Steady Boxing journey continues. Read part one.

Camaraderie

The camaraderie fostered by Rock Steady Boxing (RSB) is off the charts, and our coach is so encouraging and compassionate. We are all part of a team united in a common goal: to fight the progression or possibly reverse the relentless symptoms we struggle with daily.

No one seems to be self-conscious about being unable to master or even perform a move. We are all so focused on doing the best we can with the cards that we have been dealt. Our resolve is strengthened by the knowledge that we are not alone and there are others who are valiantly battling the symptoms of this disease.

After one class, a participant couldn’t unwrap the tape that goes on our hands under our gloves, and I was so happy to be able to help him. A few minutes later, I couldn’t put my coat on; he was right behind me and offered a helping hand, which I graciously accepted. Everyone in the class is empathetic to the challenges those of us with Parkinson’s disease (PD) face every day.

This is no children’s birthday party

My late husband Steve would always say about his German-focused cycle training camps in Mallorca: “Dies ist kein Kindergeburtstag.” (“This is no children’s birthday party.”) The same can be said for RSB. These classes are not for the faint of heart. Depending on how PD may be affecting me on any particular day, some classes are harder than others. I have read that people with PD have to work twice as hard during physical activity than those without PD due to our lack of dopamine. I can certainly attest to that theory.

A great confidence booster

PD had slowly eroded my confidence in myself as an athlete. In one RSB class, we were offered the opportunity to “break wood” with our hand. Something was holding me back from attempting this challenge.

I thought long and hard as to what was stopping me and I believe it was because I was afraid of failing due to my loss of self-confidence. In the next class, I decided to overcome my fear and attempted to “break wood.” I succeeded on the first try. You would have thought I crushed a 200-pound boulder in half, I was so excited!

Floating like a butterfly

Occasionally, I have had short-lived moments of my past athletic abilities. In one class, I recall a drill in which we were punching and ducking punches. For the briefest moment, a door to my past life of dancing opened. I had strength, power, rhythm, and speed for maybe 30 seconds. I know it was real because my fellow class members could see it and they cheered me on. It was such an incredible high, but oh-so-fleeting. As quickly as that joyous moment came, it was gone and I returned to my normal, slow, non-rhythmic self.

After being so blissfully high during my “float like a butterfly” moment, I came crashing down later that day while I was scooping flour into a plastic bag. My left hand stopped working and I dropped the open bag on the floor and spewed flour all over myself.

Unfortunately, this is a typical roller coaster ride of a day in the life of a person afflicted with PD. The unpredictability of this disease is so challenging. A day can have hopeful moments where one can feel like their pre-PD self, but then we are reminded of our reality and what we have lost to this disease and our hopes are cruelly dashed. These ups and downs are exhausting.

Digging deep

With RSB, I have rediscovered the ability to train hard, even if only for a few minutes at a time. Somehow, I am able to dig deep and really hammer parts of my workout.

In just four months of RSB, two times per week, I started to see a consistent difference in my physical abilities and my confidence was growing. I hold no illusions that I am “cured” and I understand that there will still be some bad days, but I truly believe RSB will continue to make a positive difference in my quality of life.

My RSB journey will continue, if only to briefly feel the joy of opening the door once again to the rhythm and athleticism I once enjoyed.

No rest for the weary

Although RSB has done much to alleviate my symptoms, I have learned to never let my guard down and rest on my laurels. I cannot become complacent in my quest to stop the progression of PD and minimize my symptoms. Instead, I must let my setbacks strengthen me, which in turn will allow me to persevere.

This will be a lifelong journey with no rest for the weary.

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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 My Rock Steady Boxing Journey Continues appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Rock Steady Boxing: In the Beginning

rock steady boxing

In September 2017, I started to take Rock Steady Boxing (RSB) classes. RSB has truly made a remarkable impact on improving the quality of my life.

What’s it all about?

The RSB classes I attend twice a week average about 10 to 16 people per class. The ages of the participants vary, and we are all at various stages of the disease. Many participants deal with obvious symptoms like tremors. Some are like me, in the earlier stages of PD with no glaring symptoms.

My late husband was a well-known triathlon swim coach. Steve and I were together for over 33 years, and I was immersed in his world with athletes of all levels. However, I’ve found that the drive, dedication, and commitment of the RSB participants equals or exceeds that of most of the athletes I have known. Everyone I have met in RSB classes is determined to fight this cruel and insidious disease of countless losses. None will let PD get the best of them.

In 75 minutes, we work on our stamina, strength, speed, cognitive skills, and balance. We are encouraged to count loudly and also perform fine motor skill exercises. It is like a group physical therapy session, with the bonus of mental therapy. We celebrate each other’s triumphs, no matter how insignificant they may seem to the casual observer. As an example, if a participant succeeds for the first time to perform a “skip,” we will all loudly cheer him or her on. When we literally stumble or fail at a particular drill, there are more than enough sympathetic shoulders to lean on.

Laughter is the best medicine!

We will laugh at ourselves when the sometimes absurdity of our disease symptoms threaten to dampen our spirits. During our heavy bag punching drills, our coach will sometimes tell us to go faster. I think this is hilarious since “fast” is a foreign concept to me now. Every time she asks us to increase our speed, I break out into belly laughs.

But the tears do flow

However, at some point or another during a class, many of us will experience highly-charged emotional moments. It took only a month of taking RSB classes for me to have my first meltdown.

My emotions got the best of me as I was doing a footwork drill. This was a move I had once done with grace, rhythm, and fluidity, back when I used to dance. Now when I do this step, I feel like I have lead legs, and it takes every bit of my willpower to recreate just the mechanics (forget about the grace of a ballerina) of a once-simple step for me.

Another time, we “shoveled snow.” Using a spoon with our non-dominant hand, we were challenged to fill a bowl with as many cotton balls as we could in 30 seconds. I am right-handed, and my left side is most affected by PD. It was a huge struggle for me even to get nine cotton balls in the bowl using my left hand. My eyes started to well up with tears as I was doing the exercise. I felt so uncoordinated and helpless, trying to will my body to quickly perform such a simple task. The 30 seconds seemed like an eternity, but I was finally able to finish without crying mainly due to the support and kind encouragement from other participants. Seeing the beaming smiles on some of my fellow boxers’ faces bolstered my spirits. It is ironic how failing at one small mindless task can bring a person to tears, yet, if performed well it can be so satisfying, and such a joy.

While it may seem inconsequential, performing a fine motor skill task like “shoveling snow” can become monumental and overwhelming. This is just one small example of the simple movements I had always taken for granted that PD has robbed from me. I suspect that most of my fellow boxers in class that day truly empathized with me. Although their PD challenges may be different and unique to them, I believe they, too, have their moments of despair when they are reminded of what they have lost to this disease. PD affects everyone so differently, and while one class member may perform a drill well, another may struggle tremendously with it. There seems to be no rhyme or reason as to what any one person loses as a result of this disease. One thing we are all cognizant of is that PD does not discriminate. We also realize that what we can easily do today may be robbed from us tomorrow.

To be continued …

Since there is so much to share about my RSB journey, next month, I will continue talking about my boxing experiences.

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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 Rock Steady Boxing: In the Beginning appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

What Is Helping Me the Most in My Parkinson’s Battle?

helping, battle

No two Parkinson’s disease patients are alike

I am slowly coming to realize that each diagnosis of Parkinson’s disease (PD) is unique. PD patients suffer different symptoms and different rates of disease progression. Some remedies work for some, and not for others.

In many cases, those of us with PD are left to our own devices. Doctors can only suggest options for us. As for medications, in the end, we must listen to our bodies very carefully to determine what will and what won’t work. The ultimate goal is to find the right “cocktail” of drugs so that PD symptoms are masked and there are few or manageable side effects. Sadly, my experience has been that changes in medications and dosages have not given me aha! moments where I can see a significant reduction in symptoms. If there are any improvements, they are extremely subtle.

Is it the weather?

Many of my fellow PD sufferers have shared their struggles with the appearance of a possible new symptom or worsening of existing symptoms. Is it something we ate? Or do we chalk it up to a bad PD day? Could it be fluctuations in barometric pressure or is it part of the normal aging process? Is our disease progressing or have we taken our medications at the wrong times? Should we have eaten more food or had more water with our pills? Did we get enough sleep or are we too stressed? The list goes on and on. With PD, there is so much uncertainty. It is very difficult to determine what is helping my symptoms or slowing the disease progression, and what is not.

What do I think has helped me the most?

I leave no stone unturned in my efforts to combat this disease, especially when it comes to exercise and movement alternatives.

In September 2017, I started Rock Steady Boxing twice a week.

Boxing has been one of the most effective tools in my arsenal for fighting PD. It has given me the confidence to feel like the athlete I once was. Boxing helps me improve my stamina, speed, and strength, and the participants (everyone in the class has PD) offer great support and camaraderie. As I set out on my one-hour commute to Rock Steady Boxing class twice a week and put on my hand wraps and gloves, I truly feel like a warrior getting ready for battle.

helping
(Photo by Michael Heller)

Boxing and movement, in general, have helped me the most in my daily struggles with this disease. In no particular order, I also credit the following with helping me in my war against PD:

  • Physical therapy once a week (for balance)
  • Massage once or twice a week (for stiffness and rigidity)
  • Yoga two times per week and meditation for 20 minutes up to five times per week (to train me to be in the moment, and not focus on the prognosis of this disease)
  • Attitude adjustment (accepting that I have this disease and counting my blessings)
  • Sinemet (carbidopa-levodopa), medication to relieve internal tremors

Treating PD appears to be all about finding the right combination of some or all of the following components:

  • Exercise
  • Diet
  • Supplements
  • Prescription medications

A formula for one PD patient may not work for another PD patient, and the plan must continuously be tweaked. As difficult as it is, we must reduce our stress levels. I believe both good and bad stress exacerbate our symptoms.

In a future column, I will share some of my experiences with the Rock Steady Boxing classes.

***

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 What Is Helping Me the Most in My Parkinson’s Battle? appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Back to Medications

medications

Haven’t I been here before?

I can’t fight this alone. Medications are now an option.

Several months on a holistic route gave me no improvement in symptoms. So, I bit the bullet and decided to try another Parkinson’s prescription medication.

In October 2017, I started the Neupro (rotigotine) transdermal patch. This bypasses the digestive system (hence, less chance of nausea) because the medicine absorbs through the skin. The 8-mg dosage made me dizzy, so the doctor dropped me to 6 mg. I had no dizziness, but I also had no relief from symptoms. In December 2017, I agreed to try carbidopa-levodopa (the generic version of the “gold” standard therapy for treating PD). Unfortunately, the generic medication plagued me with nausea and dizziness.

In January 2018, I appealed to my insurance company to cover the brand name version of the medication — Sinemet 25 mg/100 mg.  The doctor gave me a titration schedule to ease me into the medication. By February 2018, I was using a 6-mg Neupro patch per day and taking two Sinemet tablets three times a day. My “internal tremors” subsided and my second-left toe no longer curled. Unfortunately, this was not an “aha” moment; the change was very subtle.

Almost three years since diagnosis, I’m still putzing around.

My goal is to minimize my reliance on medications, as the long-term effects are not good (there is a risk of dyskinesia from using Sinemet). This is a classic case of a medication having a side effect that is also a symptom of the disease the medication is attempting to alleviate. In March 2018, my doctor agreed that I could cut back the Neupro dosage to 1 mg a day. This medication is cost prohibitive. Even with insurance, I pay over $200 per month.

Applying the patch to a different part of the body daily every 14 days is cumbersome. However, by the time I got to a 1-mg dosage, I had overwhelming fatigue, some depression, and general weakness. By the end of April, I had gone back to 2 mg of Neupro (while continuing with Sinemet). This change seemed to help my fatigue somewhat, but not enough for me to function well.

In mid-May, my doctor suggested I try a daily 3-mg patch of Neupro. This was very discouraging for me, as I want to take the minimum medications that will allow me to feel good enough to do the exercise I need to do to slow Parkinson’s progression and provide symptom relief. I want to decrease my reliance on prescription medications, not increase them.

What about exercise?

We walk a fine line when it comes to exercise. We need to push our intensity. However, if we get injured and can’t exercise, we lose the benefits of what movement does for our quality of life. Sometimes I wonder if I will exhaust my dopamine allotment for the day if I push myself too hard. Now, when I overdo my exercise, I am usually wasted for the rest of the day. As a former dancer and cyclist, it has always been in my nature to push my limits, and it is a tough habit to break.

To add to my confusion, I’ve read articles about how intense exercise is great for those with Parkinson’s. Exercising three times weekly at high intensity — 80 to 85 percent of maximum heart rate — is not an easy task, especially when plagued with symptoms of apathy, fatigue, and lack of motivation. As a former Spinning instructor, when I heard cycling is great for Parkinson’s patients, I was ecstatic. Piece of cake, I said to myself. However, the recommendation was to pedal at 80 to 90 rpms for 45 minutes, three times per week, a challenge even without Parkinson’s.

Cycling is great for Parkinson’s patients. (Courtesy of Jean Mellano)

In Greek mythology, Sisyphus was condemned to an eternity of rolling a boulder uphill to watch it roll back down again. At times, I feel like a modern-day Sisyphus when I exercise. It feels like a fruitless task that has no ending and is impossible to complete.

Do I still need to take prescription medications?

I am continuing to adjust my medications to find that Holy Grail combination that will hopefully make me feel more like my former self. I will take my supplements, attempt to reduce my stress where possible, maintain a healthy vegan diet, exercise, and meditate. Because I am trying so many things to improve my situation, it will be very difficult to know what is working for me and what is not.

In my next column, I will share with you what I believe has helped me the most.

***

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 Back to Medications appeared first on Parkinson’s News Today.

Source: Parkinson's News Today