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Is My Parkinson’s Honeymoon Over?

Parkinson's honeymoon

When I started writing this column, I was having a pity party and was in a bad place. Wanting to reflect positivity, I decided to stop writing until I had a better frame of mind.

Why was I feeling sorry for myself?

More than four years have passed since my Parkinson’s diagnosis. I didn’t realize how good I had it then. I remember that previously, my deteriorating symptoms would cause me to tell myself that if it didn’t get worse, I could handle it. Recently, however, it seems that many of my symptoms, especially the non-motor ones, are worsening.

My balance is worsening such that I feel unsteady when walking in narrow areas with crowds. I frequently cough and choke on my food. I gag when I take pills and supplements. People ask me to repeat myself more often. It seems as though I am slurring my speech. Anxiety frequently visits me, something I never experienced prior to my diagnosis.

I can’t seem to find the right combination of medications, despite working on that for almost two years. Much trial and error have followed, as I test whether it’s better to take my medications before or after a meal, and change or add new medicines. I must be weaned off some drugs, while others must be increased for six to eight weeks to test therapeutic benefit. Another person with Parkinson’s coined the term “tweaking and seeking” to describe this lengthy and frustrating process.

Based on my experiences and what I have heard from others with Parkinson’s, it seems as though we must choose our poison. For example, do I prefer dyskinesia induced by carbidopa-levodopa or bradykinesia, the main symptom for which I take that medication?

About that Parkinson’s honeymoon

A friend mentioned to me that he is considering deep brain stimulation surgery because he feels that his Parkinson’s honeymoon is over. I had never heard the term “honeymoon” related to Parkinson’s, so I did some Googling, wondering if my honeymoon period was also coming to a close.

In general, the first stage of the disease is a honeymoon period that lasts up to eight years, during which patients can live what’s practically a normal life, according to Parkinson Québec. It also is the stage during which treatment is most noticeably effective.

When I started to write about the honeymoon ending for me, I realized that kind of negative thinking wouldn’t help me. Leaving this column unfinished for a few weeks was a good decision. I have come back to it refreshed and with that bad place behind me.

Although my symptoms may be worsening and new ones may be appearing, I refuse to go down without a fight. Speech therapy and an assessment by a therapist certified by Parkinson Wellness Recovery are on my list of next steps. Medical marijuana, which is legal in New York for Parkinson’s patients, is something I also am considering.

It’s therapeutic to have a plan with a course of action, and I now have a renewed sense of hope. My Parkinson’s second honeymoon is just beginning!

Never give up, for that is just the place and time that the tide will turn.” ―Harriet Beecher Stowe

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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 Is My Parkinson’s Honeymoon Over? appeared first on Parkinson’s News Today.

Mission Impossible: Getting Dressed

clothes, dressing

“Your mission, should you choose to accept it … This tape will self-destruct in 10 seconds.” Mission: Impossible (TV series).

What is my problem?

At times, putting on my clothes in the morning can be an impossible mission. This is one of the unseen symptoms that some people with Parkinson’s may deal with on a daily basis. Although it is merely a nuisance at this point, feeling like a 4-year-old learning how to dress gets a little old after a while.

Since this is one of the more absurd Parkinson’s symptoms with which I am afflicted, I have to laugh at myself. I had a chuckle at a photo of me trying to put on a sports bra.

Pulling the garment over my head causes me to get “stuck” sometimes, so I bought a sports bra with a front closure. Well, that was not such a good solution. After much difficulty, I finally found the openings to slip my arms through. However, once I had accomplished that, I couldn’t fasten the front zipper and hook. I am now back to the “pull over my head style,” and hope I don’t get stuck for too long.

Columnist photo; Dressing, clothes
Struggling. (Photo by Lisa Bjelland)

It’s not just sports bras …

On more than one occasion, I have put my pants on backward or my sweater on inside out. It takes me forever to get dressed in the first place. Now when I don’t dress properly, I have to take the garment off and start all over again — adding another five minutes to the process. Sometimes it takes me almost 15 minutes just to get dressed in the morning.

Somedays I look at one of my shawl-collar cardigans and can’t figure out how to put it on or hang it up. Sometimes, my Parkinson’s symptoms of bradykinesia and loss of cognitive skills team up to thwart my efforts. When this happens, getting dressed can take me over 10 minutes, frustrate the heck out of me, and require my entire focus. Something I have done in less than a minute for over 60 years without a second thought can now overwhelm me.

I try to exercise every morning, so most days I wear tights or spandex leggings. These do not go on easily, and inevitably, my left foot freezes and gets stuck. Forget about it when I have to take them off to use the bathroom. It feels like I am trying to remove shrink-wrap from a package with no scissors to cut it, and I end up tripping over my own feet in a hurry to get to the bathroom in time. No more waiting for the last minute. Now, I must plan when to use the bathroom so that I allow myself enough time to peel off the tights.

One time I put my underwear on inside out, and when I told my friend who also has Parkinson’s, she laughed and said when that happens to her she leaves them that way. I am getting to that point now.

dressing, clothes
Stuck in a sports bra. (Photo by Lisa Bjelland)

What can I do about it?

For people with Parkinson’s, activities of daily living can become very frustrating. Here is a list of helpful tips that have eased my stress levels so that I don’t self-destruct when I am getting dressed. Keeping a sense of humor helps, too. 😊

So if you see me with my shirt on inside out and my pants on backward, you don’t need to comment. However, know that I am probably not having a good day.

To adapt a Heidi Rader quote: “I am a Parkinson’s warrior. I fight an ugly war inside my body every single day. I may not win this battle, but I will not go down without a fight!” 

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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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Plant-based Diets: What About Dairy?

plant-based diets

Plant-based diets might aid in the prevention and reversal of disease. People with Parkinson’s disease can benefit from plant-based diets.

Plant-based, vegetarian, and vegan diets

I became a vegetarian over 10 years ago. I chose not to eat red meat, chicken, or fish for animal welfare reasons. After my Parkinson’s diagnosis, I eliminated dairy products and became vegan.

Consumption of dairy, particularly milk, is linked to a greater risk of Parkinson’s. However, many vegan foods may be unhealthy. For example, a nondairy diet consisting of junk food could be labeled vegan despite the artificial ingredients.

A plant-based diet, on the other hand, consists of minimally processed fruits, vegetables, whole grains, legumes, nuts, seeds, herbs, and spices. Plant-based diets exclude all animal products, including red meat, poultry, fish, eggs, and dairy, so they are both vegetarian and vegan. Forks Over Knives breaks down vegan, vegetarian, and plant-based diets in this resource.

Plant-based diets and legislation

The state of New York recently passed a bill (pending the governor’s signature) that requires hospitals to offer plant-based meals to patients. I believe the emphasis on plant-based diets is here to stay and will become the norm over time.

My challenges with a plant-based diet

I miss Parmesan cheese (I used to put Parmesan on everything, from soup to salad to pasta), creamer for my cappuccino, yogurt, burgers, cheddar cheese for my veggie burgers, and chocolate mousse. But after much trial and error, I can finally say that I can live without them. Luckily, I can purchase nondairy substitutes at my local health food store or supermarket.

Where’s the beef?

Your supermarket may sell frozen veggie burgers. However, many veggie burgers are made with cheese or contain processed ingredients that I can’t pronounce. I have found one especially delightful burger that contains healthy ingredients and no dairy!

Cheese alternatives

Violife’s Parmesan cheese consists of potato and rice starch and coconut oil. Violife is the tastiest substitute for Parmesan that I have found. It even smells like Parmesan!

I make this delicious, dairy-free cheese dip to top my veggie burgers and bean tacos. The main ingredients are raw cashews, raw almonds, almond milk, crushed red pepper, and nutritional yeast. A blender or food processor works just as well as a Vitamix.

Milk/cream substitutes

Almond milk, coconut milk, and oat milk work well with cereal. For cappuccinos, both Trader Joe’s coconut creamer and So Delicious’ coconut milk creamer foam well and taste great.

What’s for dessert?

Tofu-based chocolate mousse is my favorite dessert now. This recipe calls for soft tofu, but I use firm tofu instead. You can tweak the maple syrup and cocoa to your liking. For a nondairy topping, Coyo makes a vanilla bean or original flavor coconut yogurt alternative.

I prefer dark chocolate, but I have found a dairy-free milk chocolate bar that I enjoy. If you like a little crunch, the company also makes a delicious quinoa crunch version.

For a really guilty pleasure, Ben & Jerry’s offers delicious, nondairy frozen desserts. They have too much sugar and too many processed ingredients for my taste, but I will eat them as a special treat once in a while. I have served Ben & Jerry’s to people on unrestricted diets, and they loved it. They thought they were eating ice cream!

Plant-based diets are the way to go, whether you’re making the change for the planet, animal welfare, or your health. You can find good dairy alternatives through trial and error.

“You can’t be an environmentalist, you can’t be an ocean steward, without truly walking the walk. And you can’t walk the walk in the world of the future, the world ahead of us, the world of our children, not eating a plant-based diet.” –James Cameron

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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 Plant-based Diets: What About Dairy? appeared first on Parkinson’s News Today.

Laughing at Myself While Lost at the Library

lost

“It’s good to be able to laugh at yourself and the problems you face in life. Sense of humor can save you.” –Margaret Cho

Lately, I feel like my cognitive skills are starting to deteriorate. I’m certainly not the sharpest knife in the drawer anymore.

This became apparent to me a few weeks ago, when I attended a “Sing Out Loud” class for people with Parkinson’s at a library. The library is about 30 miles from my house, and I am unfamiliar with the area, so I used Google Maps on my iPhone to find it.

Well, the app directed me to a large vacant building next to the library. I saw the library, but I could not figure out where the parking lot or the entrance for the building was.

I parked my car on the street and walked around, looking for the front door to the library. Feeling lost, hopeless, and confused, I was almost ready to throw a pity party, sit on the curb, and cry.

I was lost but not alone

As I was wandering, a woman asked if I was going to the “Sing Out Loud” class. It was her first time attending the class. She was also trying to find the library’s entrance.

The GPS on my iPhone got me into this mess, so the iPhone was going to get me out. I called the library for directions to their front door. Luckily, the person on the other end of the phone took pity on me and patiently directed me to the library’s entrance.

Random acts of kindness can help so much in times like these.

Laughter is the best medicine

As I step outside myself and look at the absurdity of the situation, I feel like I was in an episode of “Seinfeld.” If you have Parkinson’s, I am sure you can relate to my story. Being able to laugh at myself whenever a Parkinson’s symptom issues a challenge will help me battle this disease.

“When we begin to take our failures nonseriously, it means we are ceasing to be afraid of them. It is of immense importance to learn to laugh at ourselves.” –Katherine Mansfield

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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 Laughing at Myself While Lost at the Library appeared first on Parkinson’s News Today.

Parkinson’s Is My New Mountain

Summer School

In the spring of 2006, I was with a cycling group that headed out for a ride up a mountain to the town of Lluc in Majorca, Spain. It was a beautiful day — warm and sunny with blue skies. In the distance, I saw ominous clouds moving in toward the mountains, but I didn’t give it too much thought since the weather was so perfect where we started our ride.

lluc
The road to Lluc. (Photo by Steve Tarpinian)

About 90 minutes into the ride, it started to rain and conditions rapidly deteriorated. The temperature was falling, I had no nutrition, and I was on a country road with no signs of civilization. The rest of my group was nowhere in sight. I had no idea how much farther it was to Lluc, so I decided to turn around and go back to the hotel.

The hardest part was yet to come

As I started down the mountain switchbacks, I was terrified. My bike was picking up speed and I was hydroplaning. The fear of crashing was ever present in my mind. My hands were numb from being cold and wet. The wind was increasing and the rain was hitting my face like icy pellets.

By the time I got off the mountain and onto a flat road, I was shivering uncontrollably. Cars sped past me, spraying me with water. With about 4 miles still to go, I arrived in a town and the weather eased up a bit. Because I was on the home stretch, I chose not to stop at one of the town’s restaurants to get food or to warm up.

When the going gets tough, the tough get going

Suddenly, the winds picked up again and the draft from a passing bus nearly knocked me off my bike. I decided it was safer for me to walk. The winds were so strong that I had trouble holding on to my bike. My legs were shaking and I tried to alternate between biking and walking, wondering if I would ever make it to safety.

Finally, I made it to my hotel. My hands were shaking so much that I struggled to unlock the door to my room. I stood in a warm shower and started heaving and shuddering. Realizing how dangerous that ride had been, I was so thankful I had made it back without injury. That day, I found a strength in myself that would not allow me to give up.

“Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.” –Arnold Schwarzenegger

Facing the daily challenges of Parkinson’s

There are times in our lives when we go down a hole so dark that we must draw on our life experiences and the inner strength we didn’t know we had to pull ourselves back to the light. That cycling experience in Majorca was one of those times.

Once again, I feel myself going down a dark hole. I am experiencing a déjà vu of emotions (fear, terror, and loneliness) that I had more than 13 years ago. The memory of that trip plays in my mind as I fight my new battle against another formidable adversary. Just when I think I am making headway against this beast called Parkinson’s, it rears its ugly head with a renewed fury.

Extreme fatigue is making exercise more and more difficult. Almost daily, I must search for inner strength to pull myself out of my pity party.

The grit and determination I found while on that mountain in Spain are what I need to find once again to meet the challenges of Parkinson’s.

I am a survivor.

“Our greatest glory is not in never falling, but in rising every time we fall.” —Oliver Goldsmith

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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 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.

The post The Top Things I Learned in Parkinson’s Summer School appeared first on Parkinson’s News Today.

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.

The post What Not to Say to Someone with Parkinson’s Disease appeared first on Parkinson’s News Today.

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.

The post Fighting Back with Kindness and Compassion appeared first on Parkinson’s News Today.

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.

The post The Race of My Life appeared first on Parkinson’s News Today.

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.

The post Sinemet Has Left the Building appeared first on Parkinson’s News Today.