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The Top Things I Learned in Parkinson’s Summer School

Summer School

Laurie K. Mischley, a naturopathic doctor, assembled approximately 60 people with Parkinson’s for a conference at Bastyr University’s Seattle campus in August. The six-day “summer school” included lectures, exercise classes, and nutrition advice designed to improve each patient’s experience with Parkinson’s and possibly slow progression. Those in attendance provided blood, urine, breath, hair, and stool samples for analysis. The data gathered were used to tailor science-based, real-world strategies for each student to implement at home.

Mischley is the principal investigator in the research study “Complementary & Alternative Medicine Care in Parkinson’s Disease,” which analyzes patient experiences. This study tracks medication, dietary, and nutrition habits, as well as supplement use and other selected behaviors of people with Parkinson’s, and will correlate those factors with disease progression. For many years, Mischley has treated only patients with Parkinson’s.

Mind and movement classes were offered at 8 a.m. and 1 p.m. daily. Classes in yoga, qi gong, meditation, the Feldenkrais Method, and high impact, to name a few, were led by personal trainers, certified instructors, or physical therapists. The whole teaching staff was experienced in movement techniques that are tailored for people with Parkinson’s.

Following are my top takeaways from the conference and the teachings of Mischley. Consult your doctor before making any changes to your health regimen.

1. Step outside my comfort zone

Mischley stressed the importance of doing new, different, and challenging activities. They help us build new neural pathways, which may help slow disease progression. During the week, we were offered sessions in drumming and singing — activities that are not in most people’s comfort zones.

2. Taking prescription drugs is not enough

Socialization and support groups, exercise, diet, and dietary supplements are extremely important.

At one of the meals, I spooned rice onto my tray rather than my plate. While trying to fix the mess I’d made, I looked around and saw faces filled with empathy rather than annoyance and impatience. Many of us with Parkinson’s deal with clumsiness and the “dropsies” on a daily basis. Being surrounded by people who understand Parkinson’s symptoms can be quite comforting.

Self-isolation does not help depression (a possible Parkinson’s symptom). I know that I need to socialize more, but sometimes fatigue (my worst Parkinson’s symptom) gets in the way.

I have long believed that exercise is key to staving off disease progression. Mischley’s recommendation is five to seven days per week of movement activity, some of it intense enough to elevate the heart rate (e.g., it should be difficult to talk while walking at a brisk pace). Amplitude training and task-specific exercises should also be included.

Flavonoid consumption might be neuroprotective. Hence, Mischley recommends including plenty of dark berries and several cups of green tea in the daily diet.

A plant-based diet (no dairy) is the way to go.

3. Disease progression may be slowed with some supplements

Mischley recommends the following to potentially slow disease progression:

  • Glutathione: intranasal is better than capsules, but much more expensive;
  • CoQ10: has mitochondrial/cellular protection properties;
  • Turmeric/curcumin: curcumin exhibits antioxidant and anti-inflammatory properties, crosses the blood-brain barrier, and may be neuroprotective;
  • DHA: has anti-inflammatory properties.

4. Absorption of nutrients and medications is important

Just taking medications and vitamins is not enough. The body must properly absorb them. Even though I was taking a lot of supplements (B, D, omega-3 fatty acids), my lab results showed that I was deficient in these substances, which may indicate that my body is not properly absorbing them. I have always felt that the carbidopa/levodopa (C/L) I was taking did not really help my symptoms. Perhaps my body was not absorbing that medication properly, either.

A suggested way to optimize C/L absorption is to take nonbuffered vitamin C, such as Emergen-C, with medication. CDP-choline  and a digestive enzyme supplement were also recommended to possibly improve nutrient and medication absorption.

5. People with Parkinson’s typically show common nutrient deficiencies

Through her research, Mischley has found that there is some commonality in out-of-range lab test results among people with Parkinson’s:

* I was out of range in these areas

Most standard blood test panels do not include testing for any of the above.

6. There is no ‘magic pill’ that addresses all symptoms or progression

Mischley compares Parkinson’s to a boat with a lot of holes in it. There is no one plug that will fix all the leaks, but rather a platter of plugs. Plus, we all need to find our own way. What works for some may not work for others.

It takes a lot of trial and error to figure out a personalized strategy. However, I have faith that there is a “cocktail” of remedies that will work for me. Attending Parkinson’s Disease Summer School has helped me take the first step by giving me the tools and information I need.

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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 Not to Say to Someone with Parkinson’s Disease

words

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can Be mindful of how you speak to someone with Parkinson’s.

  

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.”Disha Patani

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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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Fighting Back with Kindness and Compassion

fight

“It doesn’t matter what cards you’re dealt. It’s what you do with those cards. Never complain. Just keep pushing forward. Find a positive in anything and just fight for it.”Baker Mayfield (American football player)

A mantra of the Rock Steady Boxing (RSB) program is to fight back. This motto empowers those of us with Parkinson’s disease to battle this illness. We must not let our guards down. We need to fight back every day of our lives to maintain our quality of life.

Weak? Not!

Recently, while taking a high-intensity interval training class, I realized that I needed to add onto that RSB slogan for myself: I must fight back — with compassion. Some days, I have to force myself to exercise. Due to the nature of my symptoms, I am sometimes too slow-moving, fatigued, or miserable to complete my daily routine.

However, since bad days are inevitable with Parkinson’s, I must remember to be kind and compassionate to myself. I need to acknowledge that I am not weak or lazy. Instead, I must accept that this disease affects me in ways that I cannot control. I can only do my best, and I must let go by recognizing the bad days.

Perfectionist and control freak

Even if I did not have Parkinson’s, it’s in my nature to beat myself up if I can’t complete my workout. My perfectionism is to my detriment. Plus, I often compare myself to my fellow participants who may be fit, healthy, and probably half my age.

“The more I expect, the more unhappy I am going to be. The more I accept, the more serene I am.”Michael J. Fox

As I have said in the past, our greatest strengths can also be our most challenging weaknesses. The fact that I am a control freak and a perfectionist may have helped me in my career. However, those traits do not always serve me well as I battle Parkinson’s.

Lesson learned

Yes, I will continue to fight back. However, I will focus on doing it with kindness and compassion.

“The truth is we’re all a little bit broken. We must learn to love the broken pieces of ourselves – be gentle and empathetic with ourselves, and others.”Karen Salmansohn (self-help author)

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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 Race of My Life

Slow Is the New Fast

Participate or compete?

Prior to being diagnosed with Parkinson’s disease, I used to participate in 5K walks and duathlons for fun. Now, I am competing in the race of my life, which is fighting back against the debilitating effects and progression of Parkinson’s. Some days, I stagger and fall, and other days, I am victorious. Tomorrow is always another day.

Courage does not always roar. Sometimes, courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” —Mary Anne Radmacher

Completing a 5K trail run in 2007. (Photo by XTERRA Planet)

The above photo was taken in 2007, the year I battled and survived tonsil cancer. I never thought I would be able to be pain-free again, let alone complete a 5K trail run in extreme heat. In 2015, I survived the suicide of my soul mate, Steve. We had been together for over 33 years, and he helped me through my cancer battle. Now it is just me, battling Parkinson’s on my own.

“That which does not kill us makes us stronger.” —Friedrich Nietzsche

I am living proof of that.

Complacent? Not!

My mantra (which I am not always good at living up to) is “I am better than yesterday, but not as good as tomorrow.” There is no rest for the weary. Those of us with Parkinson’s cannot let our guard down or allow ourselves to become complacent. Parkinson’s is a formidable adversary, and we cannot leave any stone unturned as we strive for our quality of life. When I retired from my corporate job of 37 years, I had planned to also retire somewhat from my rigorous daily exercise routines. Unfortunately, I was diagnosed with Parkinson’s within five years of my retirement.

“The best-laid schemes o’ mice an’ men [often go awry].” —Robert Burns

What is in my arsenal?

My best weapons for battling this disease are support groups, attitude, and movement. My Rock Steady Boxing classes give me a lot of bang for the buck. I get the support and camaraderie of others who have Parkinson’s, plus I get great exercise. Trying to project a more positive attitude has also helped me tremendously. There is no question in my mind that Parkinson’s has stolen my motivation; however, I can still draw on my muscle memory and discipline to get me moving every day. I developed these qualities over the years as a dancer and cyclist.

Who is my inspiration?

I can’t even begin to imagine what it must be like for someone with Parkinson’s who has never exercised in their life to start an exercise program. Chances are, they will also suffer from fatigue, apathy, and lack of motivation, which makes the prospect of having to exercise every day that much more daunting.

These are the people who inspire me to continue on and compete in the race of my life.

“Live to inspire, and one day people will say, because of you, I didn’t give up.” —Unknown

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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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Sinemet Has Left the Building

Sinemet

A recent Merck product status report shows that Sinemet 25-100 is on backorder, with no current availability date. I have been on Sinemet 25-100 for almost a year now. When my pharmacy called me to say there was no more Sinemet for my refill, I was devastated.

Generic carbidopa/levodopa (C/L) had made me nauseated when I’d tried it in the past, so my neurologist prescribed the brand name Sinemet. It took months of trial and error to find the right dosage and timing for my current “cocktail” of Parkinson’s disease (PD) medications. (I also am on the Neupro patch (rotigotine). Now, it seems I may be back to square one.

What do I do now?

Currently, under my doctor’s guidance, I am rationing my remaining Sinemet (two in the morning) and taking C/L (two in the afternoon) to ease myself into all generic. Thus far, I have had no nausea; however, I do believe my energy, balance, and fine motor skills are deteriorating. This could be because of disease progression, or perhaps, it could be due to the generic not being as effective in terms of absorption as the brand. I am back to trial and error to figure out what works for me.

In the United States, the FDA indicates that it is acceptable for a generic drug to have up to a 20 percent difference in absorption rate than the brand-name medication.

Note that symptom relief can also vary among generics, and there are several companies that manufacture C/L.

Crisis is opportunity

“When written in Chinese, the word ‘crisis’ is composed of two characters.  One represents danger and the other represents opportunity.”  — John F. Kennedy

Kennedy’s words, while not strictly accurate, make a good point. In light of this Sinemet shortage, I am trying to reframe how I view its impact on me. I am choosing to believe this may be a good thing, as I will now explore three other treatment options.

1.  Getting another opinion on my situation through a no-fee telemedicine consult.

If you have PD, live in New York, and have internet access on a computer or tablet, you may be eligible for a no-charge telemedicine consult with a movement disorder specialist.

2.  Registering for PD summer school in August 2019

This is a five-day conference at Bastyr University’s Seattle-area clinic, and it is focused on improving PD outcomes. From what I have seen on the website, most of the instructors are naturopathic; however, some are also traditional MDs.

3.  Trying infrared light therapy (photobiomodulation)

A few months ago, an Australian friend shared a video link with me about Max Burr, a man with PD who has experienced positive results from infrared light therapy. Burr is also mentioned in a news article about what is happening with infrared light therapy in Australia. John Mitrofanis, a researcher at the University of Sydney, used red lights on mice with induced PD. The animal trial found the light stopped the nerve cells in the mice’s brains from dying.

After I contacted Mitrofanis, he referred me to an Australian medical professional who was doing extensive work in creating infrared light therapy devices for humans. Her website and blog have a lot of useful information related to infrared light therapy.

I found two other promising articles about infrared light therapy, especially for treating some PD symptoms. They are:

I started this therapy at the end of May. I plan to write an article in a few months describing my experience with this treatment.

Although full clinical trials have not been completed on this therapy, I am encouraged by what I have seen. In 2018, the article “Exploring the use of transcranial photobiomodulation in Parkinson’s disease patients” was published in the peer-reviewed, open-access journal Neural Regeneration Research. It established a positive tone regarding the treatment.

Apparently, there are no side effects, and the treatment is noninvasive. My neurologist gave me his blessing to try it. I said to myself, “What have I got to lose?”

Perhaps the backordered Sinemet situation may be the best thing to have happened to me.

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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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Time to Rediscover Dance and Music

Slow Is the New Fast

Editor’s note: This column discusses suicide. 

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“The music and movement started, I was filled with great joy. I was able to take the whole class and walked out feeling accomplished, encouraged with that passion for dance rekindled. Seeing the class participants enjoy music and movement and benefit from it was so thrilling. I saw the endless possibilities for those with Parkinson’s and for myself.” —Dance for PD participant

Some background

Steve was the love of my life for over 33 years. He died by suicide in 2015. Steve would always chide me on how I never knew the lyrics to my favorite songs. While Steve knew song lyrics and was moved by them, I thrived on feeling the rhythm of the music in my body — probably the reason I studied dance for so many years.

Why did I stop dancing?

When Steve passed, I lost my love of dance and music. After receiving my Parkinson’s disease (PD) diagnosis later that year, I thought I might try Dance for PD at Lincoln Center in New York City to see if I could recapture that love of dance and music.

I left the class in tears, seeing how much I had lost, and never went back.

Fast-forward to the end of 2018, the song, and the book

More Than a Feeling” was playing on the radio. This is a 1976 Boston song and one of Steve’s favorites. Now that my life partner is gone, I find myself listening to the words of songs more. Steve’s penchant for learning lyrics spurred me to search for the words of that song. I noticed that the lyrics mentioned slipping away (“Slipped Away” is the title of Steve’s memoir, which I wrote).

Later that same week, a friend loaned me the book “Goodbye Parkinson’s, Hello Life!” by Alex Kerten. Alex espouses the Gyro-Kinetic method for eliminating PD symptoms. What I got out of the book was that movement and music are key to attaining relief. On the first page of Chapter 17, “The Role of Music,” there were lyrics from “More than a Feeling”:

“I lost myself in a familiar song

I closed my eyes and I slipped away”

Hearing a favorite song of Steve’s from 1976, reading the book about Gyro-Kinetics, and seeing the song lyrics containing “slipped away” in Chapter 17, all in the same week, blew me away.

Is this a ‘sign’ from Steve?

Perhaps Steve is sending me a sign that I need to dance again and rediscover my love of music. That is the way I will take it. Now, I am listening to a lot more music, conducting imaginary orchestras, and dancing with abandon in my living room in an effort to ease my PD symptoms.

“You’ve gotta dance like there’s nobody watching,

Love like you’ll never be hurt,

Sing like there’s nobody listening,

And live like it’s heaven on earth.”

—William W. Purkey

As I was putting the finishing touches on this column, over a week after I started it, “More than a Feeling” started playing on the radio.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 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.

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Vulnerable, but Not Alone

vulnerability

Slow Is the New Fast

“People who know me know I’m strong, but I’m vulnerable.” — Catherine Deneuve

Oxford Dictionaries define vulnerability as: “The quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally.”

Recently, I felt a level of extreme vulnerability that I don’t remember experiencing before. Potentially, this could be due to any of the following reasons:

  • I lack confidence and strength now because I have Parkinson’s disease.
  • I am old (although in my mind, I’m still 21).
  • I am a woman living alone.
  • A combination of the above.

Although, lately, I seem to blame everything on Parkinson’s — it’s a good scapegoat!

What happened?

At 7:15 one recent morning, as I looked out my kitchen window, I saw an unmarked van backing into my driveway. A man I did not know got out of the vehicle and rang my doorbell. When I didn’t answer, he tried to enter. I froze as I stood in my hallway and stared at the front door, watching the doorknob moving. My pet bunny started to thump, and I knew I wasn’t going to get any help from bunny. I think he was more frightened than I was.

Luckily, since I live in a retirement community, around-the-clock security is available. I called security, and within five minutes, someone arrived and confronted the person outside my front door.

All is well

It turns out that some construction workers went to the wrong address and rang my doorbell by mistake.

Although I felt so vulnerable in this situation, I am thankful to live in a community where I am not alone.

“I do have a vulnerable side. I think a lot of people have a misperception of me. They only see the tough, defensive, aggressive side. But every woman is vulnerable.” — Rihanna

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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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As My Losses from Parkinson’s Accelerate, It’s Time to Fight Back

fight

Don’t forget you’re human. It’s OK to have a meltdown, just don’t unpack and live there. Cry it out and then refocus on where you are headed.” —Unknown

I tend to have meltdowns more frequently these days.

Why is this happening?

My losses from this disease seem to be accelerating. Following are some examples:

  • In boxing class, I sometimes struggle with the punching choreography and can’t seem to coordinate my hands to do the actions required.
  • When reaching to place items on a high shelf, I lose my balance and fall backward.
  • My speed bag workouts are slowing down, and I lose my rhythm more often.
  • I am clumsier and tend to knock things over.
  • Typing on a computer keyboard is an exercise in futility. Sometimes my finger holds pressure on a key too much, and at other times, not enough. I can’t tell anymore.

I suspect that you can relate to my experiences only if you also have Parkinson’s disease (PD). While these setbacks may seem inconsequential, when they occur with increased frequency, it becomes frightening and overwhelming.

I must be mindful of what I do now more than ever. Falling and injuring myself a few weeks ago shocked me to the reality and seriousness of this disease. I find myself cursing at PD and yelling expletives at the top of my lungs in my house when my body fails me. My pet bunny doesn’t know what to make of this. I think the poor guy thinks I am yelling at him.

When my body does not move the way my mind is telling it to, my frustration levels accelerate. This may also be a harbinger of things to come.

Fighting back. (Photo by Michelle Del Giorno)

Running on empty

Some research indicates that over 50 percent (and as much as 60-70 percent) of dopamine-producing neurons are dead by the time Parkinson’s symptoms first appear. I have no doubt that the disease is aging me before my time. A 90-year-old friend is starting to experience symptoms that are due to aging — the same signs that I have at age 66 because of PD.

My neurologist has suggested that sometimes I need to take a step back, refocus, and not be too hard on myself. He knows me well.

I must fight back — and not give in!

At any given moment, you have the power to say: This is not how the story is going to end.” Christine Mason Miller

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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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After a Nasty Fall, I Think of Those Who Came to My Aid

kindness of strangers

We must accept finite disappointment but never lose infinite hope.” –Martin Luther King Jr.

Fallen, again

Not even two weeks after I put the finishing touches on my walking with mindfulness column, I had a very nasty fall. My first fall occurred in July 2017. Since my left foot tends to drag, I find I must focus on how I am walking so that I don’t trip. As I was heading to my car, my mind was going a mile a minute thinking about what I needed to do that day. I was not remaining in the present moment.

Lost in thought, I was not mindful of my walking, tripped, and did a face-plant on the sidewalk. As I lay on the ground wondering what just happened, I remember hearing voices asking if I was OK. As I sat up, blood poured from my face and I found myself surrounded by concern and compassion.

What do I remember?

Most of what happened in the moments surrounding the time I fell is still a blur. What I do remember is a few people crowding around me. There was a police officer, a local postal employee who also is an EMT, a man who gave me his handkerchief to stem the blood flow, and someone who ran to the drugstore to get bandages and peroxide. I am still overwhelmed with gratitude for the support of these strangers. I will say it once again, kindness matters. It was such a time of great vulnerability for me, and through the caring and concern of these strangers, I did not feel so alone.

“Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end.” –Scott Adams

Emotional and physical pain

As I drove myself to the emergency room, I broke down in tears. This was partly because of the pain, but more due to the fact that I believe my Parkinson’s disease may be progressing. Luckily, I only had some minor swelling, a few cuts and bruises, and a chipped tooth. However, my emotional healing is taking longer than my physical recovery from this fall.

Lessons learned

  1. Practice what I preached in my previous column.
  2. Remember the kindness of strangers that day, which has helped me to physically heal.
  3. I am not alone.
  4. I need to accept the fact that my mind moves a lot faster than my body and I no longer can multitask. I must pay attention to the task at hand.

If you can’t fly, run; if you can’t run, walk; if you can’t walk, crawl; but by all means keep moving.” –Martin Luther King Jr.

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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 After a Nasty Fall, I Think of Those Who Came to My Aid appeared first on Parkinson’s News Today.

Heel, Toe: Walking with Mindfulness

walking

Slow Is the New Fast Jean Mellano

Mindfulness isn’t difficult, we just need to remember to do it.” — Sharon Salzberg

The ability to walk is something many of us, myself included, have always taken for granted. Now that I have Parkinson’s disease (PD), something that used to come as a matter of course to me is starting to deteriorate. PD has adversely affected my left side more than my right side. I find myself tripping more, since I tend to drag my left foot.

Walking now requires my conscious thought

Going for a walk is now more of a mindful task than an exercise for me. I find it much more therapeutic to focus on how I walk and be in the present moment than to think about the future and how my PD may progress. With each step I take, I concentrate on repeating to myself, “Heel, toe.”

My stride analysis

When there was snow on the ground, I decided to compare my walking steps when I did not focus on saying “heel, toe” with those from when I did. My footprints in the snow were very telling, so I took a photograph. On the left side of the photo are my steps when I was not thinking about my stepping patterns. You might notice that both feet show a bit of a drag in the snow. On the right side of the photo, as I moved forward, I really focused on flexing both of my feet and having my heel strike first. There are no signs of drag on either foot.

Am I putting too much thought into this?

Years of training to improve as a dancer and a cyclist have made analysis of my body movements come quite naturally to me. Whether it was improving my pedal stroke for more cycling power or perfecting my balance to do pirouette turns, I learned to be mindful and to be in touch with how my body was performing. Now I must use that skill to help myself be more attentive when I walk.

My neurologist says I tend to overthink things. I believe our greatest strengths can also be our greatest weaknesses. Sometimes, I do overthink, to the point of getting paralysis by analysis. However, I believe that mindful analysis of my PD symptoms (including my walking technique) is critical in helping me to create different ways of doing things that at one time (before PD) used to come as second nature to me.

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.” — Unknown

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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 Heel, Toe: Walking with Mindfulness appeared first on Parkinson’s News Today.