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Parkinson’s, a Bike Crash, and a Hospitalization — Oh My!

hospitalization

As a Parkinson’s disease patient, dismay and anxiety are all too common in my life. One day, though, these negative feelings threatened to overwhelm me. 

The bike crash

My late husband always said there are two types of bikers: those who have crashed and those who will crash. 

I got dressed to go biking for a quick 30-minute ride. (Due to my Parkinson’s symptom of bradykinesia, it takes me almost as long to get ready as I actually spend in the saddle.) While on the road, I slowed down to a stop because a car approached from the opposite direction. My left foot froze, preventing me from unclipping from the pedal. I went down hard on my left side and heard my elbow crack as I hit the pavement. I screamed so loudly that the community security guards heard from over a block away. Aid arrived quickly and off to the hospital I went.

In the ambulance, I was upset at the EMS professional who had to cut off my biking jersey and jacket — one-of-a-kind items custom-designed for my late husband’s triathlon team. I suppose my brain needed to obsess about something superficial to avoid focusing on the severity of my situation.

The hospital

I never really gave too much thought to what hospitalizations must be like for a patient with Parkinson’s. 

After a brief ambulance ride to the hospital and some digital imaging, I was rolled into an emergency surgery that lasted over four hours. My left elbow had a compound open fracture. I learned very quickly during this hospitalization that neither my doctors nor nurses were well-versed in Parkinson’s medications.

Most people with Parkinson’s struggle trying to find their ideal medication cocktail, and in my experience, the time of day one takes medications can make a difference. Following are the medication challenges I faced during my hospital stay; keep them in mind so you can prepare for the potential of a hospitalization.

Contraindications

This article nicely summarizes which hospital medications should not be administered to a patient with Parkinson’s. Luckily, my emergency contact (my cousin) was aware of these contraindicated drugs. My neurologist made us aware of them during a past visit, and my cousin took good notes!

Generic vs. brand

In my experience, hospitals prefer to supply generic medication alternatives rather than brand names. This could be a problem if you are dependent on a specific brand name for relief. My hospital also dispensed a generic from a different manufacturer than I was used to taking.

Timing of medications

My medication schedule did not line up with the hospital’s schedule for providing meds.

Medication stock

The hospital did not have selegiline or Neupro. Thankfully, my cousin was able to pick up my medications from my house.

Lessons learned

My Parkinson’s symptoms now seem only slightly worsened. That may be the result of a disruption to my normal medication intake, or it might be due to trauma and surgery. Maybe both.

As with any adverse experience, I try to look back and see what I can learn from the situation. 

  1. I have accepted that I am not the cyclist I once was.
  2. I am thankful for what I can still do.
  3. I have great gratitude for my friends and cousin who are supporting me through my recovery.
  4. It is important to have a strong core. This has helped me physically get out of bed and also has given me better balance so I don’t fall and re-injure myself.
  5. I must remind myself that I have made great progress toward recovery. The first day after surgery, I had to use a bedpan. By the time I was discharged from the hospital two days later, I could walk unaided to use the bathroom.
  6. My fierce streak of independence needs some tempering. I am learning to accept help when offered.
  7. You don’t know what you’ve got ’til it’s gone. 

Where do I go from here?

Will I get back on the bike again? Maybe. In the meantime, there is no doubt in my mind that I will return to Rock Steady Boxing. My left jab may never pack the power it once did, but I look forward to helping my Parkinson’s symptoms and possibly slowing disease progression.

I’ll be back for round two!

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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 Parkinson’s, a Bike Crash, and a Hospitalization — Oh My! appeared first on Parkinson’s News Today.

My Pet Rabbit Helps Me Live with Parkinson’s 

“Until one has loved an animal, a part of one’s soul remains unawakened.” ― Anatole France

Dogs can help as emotional and physical support animals for humans with various disabilities and chronic illnesses, including Parkinson’s. These animals help make life easier for their humans and improve their quality of life.

Rabbits can’t be classified as support animals because they can’t be trained to help with physical tasks. However, they can provide emotional support by furnishing comfort and other therapeutic benefits to their owners through companionship.

Budgie Bunny

In 2010, my Budgie Bunny was found wandering in a park, fending for himself. Members of a local rabbit rescue organization asked me to foster him until his forever home could be found. That was 10 years ago. Needless to say, I failed at being a foster parent. As a friend once said to me, there are worse things in life to fail at.

Little did I know that five years after saving Budgie, I would be diagnosed with Parkinson’s. Now he is helping to save me.

How could a 4-pound fur ball possibly help someone with Parkinson’s? More than once when I was in the depths of despair, having a pity party for myself over my current health situation, I have crawled into a ball on the floor and started crying. Many times, Budgie would come over and give me bunny kisses. My tears would melt away, and I would be filled with gratitude to have such a great little buddy who seems to sense my emotions. I do not feel so alone having Budgie in my house.

What else has my bunny done to help me fight Parkinson’s?

Living with a rabbit has taught me some valuable lessons. Budgie has helped me to live in the moment. He taught me to be more patient. And he helped me keep laughter in my life.

Live in the moment

Budgie gets me out of bed in the morning. If I don’t feed him on his schedule, he will make a racket by pushing around his food bowl. If he wants attention, especially when I try to meditate in another room, he will create a lot of noise by working on a bunny construction project or thumping his hind leg. At times like these, I forget in that moment that I have Parkinson’s, and I become aware that Budgie needs something from me.

His life is so precious and he gives me so much comfort.

Patience is a virtue

Since rabbits are prey animals, they tend to be afraid of their own shadow and do not automatically trust humans. It takes a deliberate investment for one to build a relationship with a rabbit. Initially a bunny may be shy, afraid, independent, or hesitant to trust a human. I developed a lot of patience waiting for Budgie to be comfortable with me. It took him a long time to realize I wouldn’t eat him for lunch.

Now that I experience bradykinesia, a Parkinson’s symptom, I can become impatient with myself when I get dressed in the morning. However, the patience I developed while caring for Budgie has helped me to better cope with my slowness of movement.

Laughter is the best medicine

Budgie’s antics never fail to make me smile or laugh. Just this week, I forgot to put his litter box in his pen and he decided to use his food dish as his litter box. Much to my surprise, he didn’t even miss!

Instead of getting annoyed, I chuckled and gave my sweet bunny a few scratches behind his ears.

Laughter can alter dopamine and serotonin levels that are reduced in depression. Depression can affect up to half of all people with Parkinson’s at some point during the course of their disease. Budgie keeps me laughing, and laughter makes me feel good.

Although Budgie cannot provide physical assistance or balance and support like a guide dog, he does provide companionship and makes a great emotional support animal for me. Studies have linked pet ownership with reducing signs of depression in people with chronic illnesses and with reducing loneliness.

Having Parkinson’s can bring about many emotional and mental health problems. The calming nature of a therapy or emotional support animal (yes, even a rabbit) can help ease anxiety, release endorphins, and reduce stress.

“Rabbits will always have a special place in my heart. They are often discredited as being good pets because they don’t ‘do anything’—ask any rabbit owner and watch how they laugh!” – Shenita Etwaroo

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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 Pet Rabbit Helps Me Live with Parkinson’s  appeared first on Parkinson’s News Today.

I Am a Survivor in More Ways Than One

strength

It was the best of times, it was the worst of times …” —Charles Dickens

The worst of times

Currently, my retirement community is on lockdown and was one of the first places in my county in Long Island, New York, where COVID-19 cases were reported. Eight residents have since passed from this virus. (One was a vibrant 89-year-old with no underlying conditions).

While having a pity party for myself over my current circumstances, I lamented the fact that my late beloved life partner, Steve, was not here with me so that we could face this pandemic shoulder to shoulder and lean on each other when the going gets tough. After all, Steve helped me through my cancer diagnosis and treatment in 2007. He was there with me on 9/11. I miss his strength and strong arms around me during this turbulent time. With Steve at my side, I felt I could face anything.

Unfortunately, Steve passed in 2015, and seven months later, I was diagnosed with Parkinson’s. Now it is 2020, and we are in the midst of a pandemic and a country divided. I miss Steve more than ever.

My rock

I shared with a mutual friend how I counted on Steve for being my rock, especially during troubled times. She responded with great words of wisdom: “Steve laid the foundation for the strength and love you still have today. Stand on it and cherish what you had.” These words kept playing over and over in my mind. I realized that she was right.

For the first time since Steve passed, he visited me in my dreams the other night. In the dream, I saw him at work, but I was afraid to approach him for fear he had forgotten me. Eventually, I walked up to him, and he gave me a huge bear hug with his massive swimmer’s shoulders that enveloped me like a protective cocoon. I collapsed in his arms as he told me he would never forget me. Days later, this dream is still vivid in my mind, and tears are rolling down my face as I write this.

The best of times

Every cloud has a silver lining, and this current storm we are weathering surely will have some. I see it already. As a person with Parkinson’s, I tend to self-isolate, since it is such a struggle to appear “normal” in front of others. Now that self-isolation is a requirement to battle this virus, I find myself craving contact with other humans. Socialization with others is an important therapy for fighting Parkinson’s-induced apathy. When we get to the other side of this crisis, I will definitely plan to socialize more.

If Medicare extends the coverage for telemedicine beyond the COVID-19 public health emergency, it may become the norm for all insurance providers to provide this benefit. For my situation, it eliminates a 60-mile round-trip to see my doctors. Telemedicine can potentially provide me access to top specialists across the country. Two of my doctors just started offering telemedicine visits.

In New York state, over 40,000 healthcare professionals have stepped forward to provide their expertise and assistance during this pandemic. This restores my faith in humanity. We are all in this together, regardless of race, age, or political persuasions.

I truly believe we will come out on the other side of this healthcare crisis better than when we entered it. We will have more compassion for each other, including those species we inhabit this planet with.

How will I get through this?

I am a cancer survivor, twice a suicide loss survivor, and a Parkinson’s fighter. Having these experiences, plus the foundation Steve gave me, will serve me well as I struggle to fight and survive during this turbulent time.

Everyone has crosses they bear in their lives. I believe the strength we build while dealing with past tragedy makes us that much stronger. Sometimes it may not be readily apparent and we must dig deep to find it.

I will survive, once again.

While there’s life, there’s hope.” —Marcus Tullius Cicero

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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 I Am a Survivor in More Ways Than One appeared first on Parkinson’s News Today.

Does an Exercise Lifestyle Before Parkinson’s Onset Affect Progression?

exercise, columnist graphic, don't use

 “When it comes to eating right and exercising, there is no ‘I’ll start tomorrow.’ Tomorrow is disease.” –V.L. Allineare

In December, I asked members of the Parkinson’s News Today Forums if anyone was an athlete prior to their diagnosis. By “athlete,” I mean a recreational athlete who consistently trains and challenges themselves, not elite or Olympic-caliber athletes.

The benefits of exercise for people already diagnosed with Parkinson’s are well-known, but I’ve been wondering whether an active lifestyle before disease onset makes a difference in the rate of symptom progression. Could consistent exercise before Parkinson’s onset be an investment in an individual’s future quality of life?

Food for thought

The majority of forum respondents stated that they exercised for much of their adult life and continue to do so post-diagnosis — some of them quite vigorously. Many said their Parkinson’s progression is slow. Is that because of their current exercise regimen, their pre-diagnosis activity levels, or a combination of both?

One forum respondent theorized that his lifelong commitment to exercise may have delayed Parkinson’s onset until his early 60s.

A former soldier who’s continued training post-diagnosis said his medical team observed that his progression is slower than the roughly 2,000 Parkinson’s patients they see. He said they believe their fittest patients have the slowest rate of progression.

Noticeable pros and cons of pre-diagnosis exercise

My pre-diagnosis training regimen consisted of:

  • Dancing and training like a professional for 15 to 20 hours per week
  • Weight training two to three times per week
  • Cardio, such as cycling, spinning, heavy bag classes, or race walking three to five times per week

Unfortunately, due to aging and Parkinson’s, my current exercise routine is nowhere close to that.

For me, the only downside to my pre-diagnosis exercise lifestyle has been that I am much more aware of what I’ve lost to this disease. However, the traits developed from years of training far outweigh that downside: My past active lifestyle has aided in retaining muscle memory, the self-discipline to get myself off the couch so I can push through workouts, and the ability to go on “autopilot” when feeling unmotivated.

Exercise is medicine

The forum discussion and my own life experience have convinced me that both pre- and post-diagnosis exercise lifestyles go a long way in staving off Parkinson’s progression. As one responder noted, “In summary, based on the experience of the participants in this thread, it seems there might be a correlation between a person’s pre-PD exercise regimen and delayed onset and/or slower progression of PD.”

Unfortunately, it appears exercise as a lifestyle does not fully prevent Parkinson’s. The good news is that I don’t see any real negatives to safe exercise, pre- or post-diagnosis. Now, if only I could eliminate other symptoms like fatigue, apathy, and lack of motivation …

As if you needed another reason to exercise consistently.

What have you got to lose?

“Those who think they have no time for bodily exercise will sooner or later have to find time for illness.” –Edward Stanley

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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 Does an Exercise Lifestyle Before Parkinson’s Onset Affect Progression? appeared first on Parkinson’s News Today.

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.

The post Mission Impossible: Getting Dressed appeared first on Parkinson’s News Today.

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.

The post Parkinson’s Is My New Mountain appeared first on Parkinson’s News Today.

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.