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Have You Joined Our Parkinson’s News Today Forums Yet?

forums

The Parkinson’s News Today Forums were created to allow those of us with this disease to lean on and learn from each other, and most importantly, laugh together. The forums also aim to help caregivers, family members, and friends to understand the daily challenges of those living with Parkinson’s disease (PD).

Have you ever tried to explain to someone without PD how difficult it is for you to fold sheets or put on a seat belt? Only another PD patient can empathize with this disease of “little losses.” We hope that these forums can facilitate and encourage these conversations.

Our goal is to be the “one-stop-shop” forum for information and experiences related to PD.

Why should you check us out?

Our forums differ from other platforms in the following ways:

We have moderators

I moderate the forums alongside my BioNews Services colleague Ally Macgregor. We remove advertisements, links, and promotional posts, and we ensure that discussions remain respectful and relevant.

Regular contributions

As moderators, we keep the forums active with discussions on topics related to new research and shared experiences. We respond promptly to questions and concerns from members, and we hope to lessen feelings of social isolation.

We monitor the audience

We will quickly delete spam and promotional content. We don’t tolerate bullying or belittling behavior, and comments that violate our policy will be removed.

Additional features

You can add media to your posts, including videos, images, links, and podcasts. A private messaging option also is available for members.

Keyword search

You can search for a topic using specific keywords related to your area of interest.

Someone to lean on

Knowing we are not alone with our disease is empowering. Being part of an online community can help us to heal and to cope with PD’s challenges. The forums allow you to share your personal experiences and frustrations with challenging situations.

To learn from

We will keep you up to date with posts about cutting-edge treatments for PD. Participants can share their symptoms and experiences and the treatments they have found to be most effective. However, please remember that PD symptoms, medications, and side effects vary from patient to patient. While an alternative treatment, medication, or supplement may benefit one patient, another person may not have the same response.

To laugh with

Laughter is the best medicine. Having a sense of humor about the absurdity of some PD symptoms can help with the healing process. If we can share our stories with others, it may lessen the embarrassment caused by our symptoms.

When and where

Our PD forums launched in 2018 and cover a broad set of topics, including:

Convince me

Following are three examples of topics currently being discussed in our forums. Click on the links to join the conversations.

Count me in!

Getting started is easy:

1. To create a profile, go to “Register,” located at the bottom right of the “Log In” section.

2. Once you’ve entered your details, you can head to the main forums page. Discussions are moderated and inappropriate comments will be deleted.

3. Start exploring the forums now.

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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 Have You Joined Our Parkinson’s News Today Forums Yet? appeared first on Parkinson’s News Today.

My PD Frustration Consists of More Than Only Symptoms and Treatments

frustration

You don’t have to be positive all the time. It’s perfectly okay to feel sad, angry, annoyed, frustrated, scared and anxious. Having feelings doesn’t make you a ‘negative person.’ It makes you human.” –Lori Deschene

As many people with Parkinson’s will attest, both Parkinson’s disease (PD) symptoms and finding the right treatment to alleviate them can be extremely frustrating.

The perception

Just as frustrating for me is that everyone thinks I am fine. Since I have no tremors, there are no obvious symptoms. Most well-meaning, healthy people either tell me I look great or that they have the same issues as me — cognitive decline, balance, poor fine motor skills, slowness of movement, and fatigue.

The truth

I struggle to maintain balance and must consciously avoid walking into furniture. My body, especially on the left side, does not always listen to me when I tell it to do something. Trying to maintain focus to do this is draining in itself. I also feel weak inside and I am always extremely fatigued. It is an exhaustion that no amount of sleep or rest can diminish.

A glimpse into my frustration

To help my fine motor skills, I have taken up ukulele lessons. I never played any instrument in my life, so I have no muscle memory to call on. The left hand and fingers play a huge role in learning how to use this instrument.

Recently, I had a meltdown in one of my lessons. My left fingers were not listening to me while trying to play some chords. The instructor was very patient, but I don’t think he understood the extent of my struggles. I was trying to play a G chord, which requires positioning three fingers from my left hand on various frets. These fingers would not cooperate and they just froze. With all the energy I expended trying to get my fingers positioned, I worked up a sweat.

Finally, so full of despair and frustration over what I have lost, I just broke down in tears. I can no longer control my body.

Empathy

The frustration continues on many fronts for me: the symptoms themselves, trying to find something to help treat my symptoms, and well-intentioned people not comprehending what I struggle with daily. Many years before I was affected by this disease, a friend of mine was diagnosed with PD. I could never understand why it was so hard for her to put on a seat belt.

Now I know.

I have a form of Parkinson’s disease, which I don’t like. My legs don’t move when my brain tells them to. It’s very frustrating.” –George H. W. Bush

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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 PD Frustration Consists of More Than Only Symptoms and Treatments appeared first on Parkinson’s News Today.

Reflections on My First Year of Rock Steady Boxing

reflections

Twice a week for over a year, I have been religiously taking Rock Steady Boxing (RSB) classes for Parkinson’s disease (PD).

Has RSB helped my PD?

I believe that my PD symptoms would be worse or my disease would have progressed more quickly had I not taken these classes. There is no definitive proof of this. My dietary changes and the medications and supplements I’ve taken may have slowed the progression of the disease and prevented new symptoms from appearing or old ones from worsening. Before my diagnosis, I was a trained athlete with well-developed muscle memory, which may explain why I am not worse off now. Perhaps it is a combination of all of these reasons.

Other intangible benefits

Although very elusive, the ability to recapture a few moments of graceful movement and rhythm fills me with joy. A dance teacher once told me, “The good thing about ‘losing it’ is that you ‘had it.’” This gives me hope, and I keep coming back to rediscovering that feeling.

Vulnerability plagues me because I feel PD has made me weaker, but RSB has given me moments of confidence and strength.

Camaraderie

“You don’t appreciate things until they are gone. For me, I miss my friends; I don’t miss boxing, I miss the camaraderie.” —Sugar Ray Leonard

In RSB, the participants relate so well to each other’s triumphs and failures. More than once, I have broken down in tears during class, feeling sorry for myself over what I have lost. Every time that has happened, at least one of my fellow boxers has comforted me, got me back on my feet, and encouraged me to carry on. The empathy is strong among RSB participants and we are always there for each other.

The camaraderie of those classes is incredible. Most of us come to class feeling tired and apprehensive of the workout to come. However, by the time we leave we are all smiling and looking forward to the next class.

What is next for me?

I am so inspired by what RSB has done for my classmates and me, that I have become certified as an RSB coach. When I first started taking RSB classes, my goal was to be the “poster child” for RSB. With the encouragement of my coach, the volunteers, and my fellow classmates, I have completed the certification process. Even if I never teach a class, I believe that taking the course and passing the test makes me stronger and will hopefully provide inspiration to others with PD.

You are always a student, never a master. You have to keep moving forward.” — Conrad Hall

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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 Reflections on My First Year of Rock Steady Boxing appeared first on Parkinson’s News Today.

My DaTscan Results Made My PD Diagnosis ‘Real’

DaTscan

When I was first diagnosed with Parkinson’s disease (PD) in 2015, I asked the neurologist if there was a definitive test to confirm a PD diagnosis. I mentioned a DaTscan, but he said the test is not entirely conclusive. He also indicated that DaTscan results likely would not change his prescribed course of treatment for me.

His view was that the best way to confirm a PD diagnosis is to give a patient the medication levodopa to see if PD symptoms disappeared. Other neurologists I consulted for second opinions concurred with his assessment.

What is a DaTscan?

DaTscan is a medication that is injected into the bloodstream to assess dopamine-containing neurons that are involved in controlling movement. The contrast agent ioflupane (123I) is distributed around the body in the bloodstream and accumulates in the area of the brain called the striatum, where it attaches to the structures that transport dopamine. The patient then has a single-photon emission computed tomography (SPECT) scan.

The DaTscan test was designed to differentiate parkinsonian syndromes from essential tremor. PD is the most common form of parkinsonian syndromes, but there are other forms, including multiple system atrophy and progressive supranuclear palsy.

My DaTscan

A comparison between a normal and an abnormal DaTscan can be viewed here. A normal DaTscan will show two distinct comma-like or crescent shapes. An abnormal DaTscan will have two period-like or oval shapes, or a combination of period and comma shapes, indicating a reduced uptake of DaTscan in certain areas of the brain. Parts of the image that are “lit up,” indicate more surviving brain cells. Dark areas could mean either PD or parkinsonism.

My DaTscan image showed that the right side of my brain is less “lit up” than the left side. The right hemisphere of the brain coordinates the left side of the body. The left side of my body is the one most affected by PD, so it makes sense that my right side brain is less “lit up.”

Am I convinced that I have PD?

Three years after my diagnosis, I am still struggling to find relief from my symptoms and slow the progression of this disease. I exercise, eating a mostly vegan and gluten-free diet, take Sinemet (carbidopa-levodopa), and use the Neupro transdermal patch. I am working with my current neurologist to fine-tune my medication “cocktail.”

I had wondered whether I did have PD since I’ve never had an “aha” moment in which I feel somewhat normal after taking medications. People tell me I look fine and they don’t observe any external signs of the disease. However, my tremors are internal and I feel horrible and constantly fatigued.

Why now?

I am subjecting my body to what I believe are toxic medications to treat a disease that I feel has been subjectively diagnosed. My symptoms have not been completely alleviated with my current exercise, diet, and prescription medication regimen. I wanted more concrete evidence that I have PD, so my neurologist prescribed a DaTscan. Much to my dismay, the results were abnormal and compatible with Parkinson’s syndrome.

Seeing my brain image with areas not “lit up” where they should be, when contrasted with a normal DaTScan, made my diagnosis very real for me. I have a form of parkinsonian syndrome — most likely PD.

Would I still have gotten a DaTscan?

It was important for me to have confirmation other than my symptoms of abnormalities in my brain. I think this scan can be used as a baseline to follow my disease progression.

So, yes, I would have still gotten this test, although the $2,000 out-of-pocket cost upfront may have given me pause.

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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 DaTscan Results Made My PD Diagnosis ‘Real’ appeared first on Parkinson’s News Today.

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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Source: Parkinson's News Today