Parkinson’s in a Pandemic

parkinson's in a pandemic

Due to the COVID-19 pandemic, nearly a million of us with Parkinson’s in the United States have had to switch to telemedicine for our neurological checkups; checkups that are usually a very touch-based process. This new disconnect can leave a lot to be desired of these semi-annual appointments. Our doctors rely on a thorough neurological examination to determine changes in symptoms since the last visit, and while they are doing their best to adapt with the tools at hand, the resulting treatment isn’t optimal.

Three years ago, when I created my Parkinson’s Lifekit app for those of us who wanted to track our symptoms over time, I could never have imagined that it would come particularly in handy during a pandemic. But it has done so brilliantly! Parkinson’s LifeKit tracks a range of physical, cognitive, and psychological symptoms and makes it easy to report these to our neurologists. Armed with multiple tangible data points, our doctors can better understand changes in symptoms and make recommendations around optimizing medications, increasing fitness, and other life improvements. Even from miles away.

Virtual visit with my neurologist

When the time came to visit my neurologist via the MyChart app, I presented him with all of the data the app had collected in an easy-to-read format, allowing for a more personalized experience. The app let me print out a one-sheet of all my ups and downs for the past six months. This gave my neurologist a clear view of how my body has been treating me in response to medicine, exercise, stress, and more.

app hero image

An all-in-one control center

I’ve been sharing personal medical data with all of my doctors for a long time. One of the biggest reasons I created this app was that I used to use a dozen apps to do what Parkinson’s LifeKit does in a single app. Plus, I’m always adding new features, like tracking dyskinesia and tremor, so I’m always adding value.

I wanted to make things simple and economical for fellow Parkies, so once you buy the app, you get updates for life for free. Yes, it costs money – $20 – but everyone I’ve spoken to has said that’s a bargain for everything you get. Most developers out there give you their app for free but they take your data and use it in ways you may disagree with. Parkinson’s LifeKit is all about privacy, security, and you owning your own patient data.

I’d like to hear from you!

I’m always excited to hear from fellow Parkies, especially now during this pandemic. Please drop me an e-mail if you have any questions, concerns, ideas, or just want to say hi! I reply to all of my e-mails. nick@parkinsonswarrior.com.

Check out the app below:

Fighting Through the Isolation

isolation

As we all know, times have recently gotten tough… for everyone. No matter if you’re a person with Parkinson’s living in the UK, the US, or anywhere else in the world, or if you know or love someone with PD, care has just become more difficult thanks to COVID-19. We’ve had to self-isolate to ensure we are safe from the virus. After all, having Parkinson’s is considered an underlying condition – it’s something that will keep us from fighting the coronavirus as effectively as someone without PD, even for the muscle-builders among us.

So you’ve made the right choice and decided against going outside. If you’re lucky, you face isolation with a partner who may or may not be your caretaker. Either way, you’re isolating and hunkering down for the long run – your front door will remain closed for the time being. So how do you get through this time? After all, the governor of New York said this isolation period could last 3 to 9 more months! I’ll share some of the ways I’m fighting isolation, and how you might as well.

Your body is still your temple

Isolation and self-quarantine are no reason to let your body go. Your number one priority is making sure you get the exercise you need, the nutrition you require, and you take your meds as prescribed. As I mention in my book, every little bit of exercise helps. Use 500ml bottles of water as one-pound weights, walk the perimeter of your room, apartment, or house. If you can, open the window and draw the blinds for a few minutes each day. The sunshine and air will do you good.

Your mind must also stay fit

As important as it is for your body to stay healthy, your mental health is as important. We’ve all heard the terms – going stir crazy, having cabin fever – these do a good job of describing our new indoor reality. The worst part is not having human interaction. So while you try to stay cognitively well, playing board games, doing crossword puzzles, yes, even binge-watching your favorite shows on TV, pick up the phone and call a friend or other loved one. If you are able to, schedule a video chat with the people you miss in your life. And do it with greater frequency than you normally would. Don’t forget, loved ones are going stir crazy too! And if you’re feeling like no one understands what you’re going through, join the discussion with other Parkies on Facebook.

Services, services, services

While you’re not willing to risk your health for a bottle of milk, there are young healthy people out there doing us all a great service by delivering food (raw and already cooked), medications, and more. I personally use a service called Instacart, which allows you to send a personal shopper into your favorite market. and deliver the items to your door. You can even do so-called contact-less delivery, which means you don’t even interact with the delivery person. I’ve been in lockdown for two weeks but my fridge is full of fresh food.

Wipe, wipe, wash

Wash your hands with soap. I can’t stress this enough. Even if you don’t go outside and decide to have food delivered, wipe down the boxes and the handles you touch daily. I have a neighbor who buys all her needs on Amazon. That’s great, but do you know how many people touched your box and what’s inside before it reaches you? Yeah… wipe everything down with Lysol wipes (or generic). And before you put anything into your mouth… make sure you’ve washed your hands.

We’ll make it through, have hope

Turning on the news has become scary lately. Every channel is eager to tell us the “worst-case scenario” for the coronavirus. It doesn’t mean that’s how it will turn out. Headlines like “40-70% of Americans will get the virus” are opinions and don’t need to come true. Don’t lose hope. This is only temporary. If you practice social distancing (staying inside in your own personal bubble), and wash your hands and wipe down anything coming into your bubble, there’s no way the virus can catch you.

Don’t forget, this too shall pass. You’ll make it out the other side. Just have hope and practice some safe hygiene and social distancing.

Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.

My Parkinson’s Story: Steve Fyffe

seniors exercising on a bike

Ed. Note: This article is a part of an ongoing series of stories from Parkinson’s Warriors from the community.

How it all began

February 2012, I had my 39th birthday a few days before I had been summoned to see a Consultant Neurologist as a result of a problem with my left elbow. The problem was that for about 4 months I’d had the feeling that my left elbow was dragging a heavy weight. It became more troublesome every day, so much so that even the simplest of tasks was becoming difficult.

I never thought a great deal of it at first because I was a Police Officer who practiced martial arts, so I thought I’d hit the elbow whilst arresting someone or training somehow. So to say it was a shock to receive a Parkinson’s diagnosis would be the understatement of the year.

However, because there was little or no physical change within the first few years we, (my family and I) coped quite well. Despite the diagnosis, I kept on working for 4 years (Finally succumbing to the fatigue and lack of focus). Albeit in an administrative role in the Family Protection Unit.

This was when the reality of the situation hit me.

Reality bites

I really began to suffer in 2018. I’ve no idea why but my anxiety levels soared to such a degree that I was having off periods of more than 4 hours! Within months I was badly depressed. So much so that I thought about doing something stupid.

A spell in a mental health unit allowed me to evaluate what was important in life.  Things had to change, I knew that. I came home after a few weeks, and the hard work was about to begin.

I had become so dependent upon family helping me, get dressed, go to the bathroom, and assist me with basic tasks that my wife and two sons, (then 16 and 12) were struggling.

So I sought help. I attended a care group every Thursday, which allowed me to interact with people again because I had become a recluse. I spoke to someone from Penumbra every week (Mental Health charity), I underwent hypnosis and began meditating.

A new mindset

Instead of convincing myself I couldn’t do something, I began looking at what I could do. Within weeks I could calm myself down and look at things with a positive outlook (This was hard for me because I’d always been negatively minded).

I’ve created a positive routine. I control my breathing if I wake up anxious, if not, then I skip to the second task of telling myself I’m going to have a good day. I clap my hands once and say C’mon. Then when I successfully get up and get dressed within a few minutes I say F*** you Parkinson’s.

If at any time I feel anxious or tense, I sit down close my eyes and control my breathing. If I’m outside I sit down and think of a bird flying which always calms me down.

I have even achieved a dream and published my first book something I never thought possible before.

POSITIVE MINDSET IS EVERYTHING.

Steve is the author of the novel, The Trophy Killer.

My Parkinson’s Story: Charles Chastain

flower hopefully growing out of the ground

Ed. Note: This article is a part of an ongoing series of stories from Parkinson’s Warriors from the community.

Parkinson’s made me a better person.

That’s a strange thing to say and believe me it is, but I wholeheartedly believe it to be true. I am in what I still consider my honeymoon phase of my diagnosis, in that, I was just diagnosed on December 19, 2018, at the age of 42. That was the day I heard those three words that change any PWP’s life…”You have Parkinson’s.”. At that point, my brain turned into static as I could see my doctor’s lips moving but all I could really hear after that point was static. My only response was “cool”, yeah only one word that made no sense to what I was being told. In a way it was a relief, the prior seven years had me in and out of doctors’ offices seeing everyone from general doctors, ER room visits, cardiologists, neurologists and even a neurosurgeon for good measure.

During that time going through all the blood tests, MRIs, along with all those specialists coming up with no idea with what was going on. I heard a lot of statements like “I can tell you what you don’t have but not what you do have” as one by one they eliminated potential diagnosis. I would tell my wife that I don’t care what I have, I just want to know what is going on so that we can focus on that and move on to working on getting better. So when the latest neurologist ran her tests and came back with those words I was relieved and yet not prepared in any way to hear it. I walked out of the office that day in a daze with a prescription for carbidopa/levodopa and now an unclear future.

During this period I devoured everything about Parkinson’s I could find online to now figure out what this now exactly means for me. I quickly learned that there is a lot of information out there and it can all be overwhelming. Even though it’s only been a year for me since my diagnosis I have found a few things that have led me to now being in a much better place mentally which helps dealing with the physicality of this disease with a smile. If there are tips or advice that I could provide for anyone who was just diagnosed it would be these things.

It’s Ok to have a bad day(s)

After diagnosis and finally getting treatment with medication, there were days where the medicine made it feel like I was as close to being normal as I had felt in years. This alone was a victory in and of itself. It also had a slight negative effect in that when I would then have an off day or off moment from the meds not working or my body reminding me who was in charge it felt like being put back to square one. As some of us have learned depression being a symptom of this disease would take over and it would begin my stages of grief all over again.

Over the next few months, I had to learn to take a step back and realize that symptoms could roll in like the tides and not stay long. It became easier little by little to let myself be ok with that bad days are going to happen and sometimes they’re just bad hours and they go away with another dose of medication or a nap. By allowing myself to be ok with these moments I am able to laugh it off and say you won this round, but ill be back made it easier and not add to what I was fighting at the moment. Be resilient, be strong, we’ve all fought this disease in our own ways and have only come back stronger so don’t let the bad day ruin your week or even that day.

Exercise Exercise Exercise

This piece of advice given to me by everyone and everything I read has been vital. Exercise is a secret gift when it comes to fighting Parkinson’s. While it won’t cure all the ailments it does slow the progression and who wouldn’t like to do that…and for free no less! Exercise for me and particularly running has helped me stay active which in turn helps keep my mood up, reduced stiffness I experience usually later in the afternoon and improve my mobility overall.

Prior to my diagnosis and even before the kickoff of symptoms I was not one who enjoyed running, it was something that seemed foreign and let’s be honest, painful. However, after being told that exercise could help I turned to running at first as part of my stages of grief. I ran with a lot of anger, mind you I never got that far at first. It didn’t matter, I was determined to get out there and slow this thing down in any way possible. Quickly I realized that after each run my mood was changed and I felt better overall, outside of running aches but those are good aches.

Running became my therapy and medication to be a healthier person and tackle this disease head-on. Five months after I was diagnosed I signed up for a ten-mile race just to prove I could do it. My wife was running a marathon at the same race and we’d run together for 5 of those miles and then id turn off and head back by myself. In the end, I pulled it off and even finished 3rd in my age group. That felt like such an accomplishment that I a few weeks later signed up for a half marathon. I am happy to say that I also finished that race.

Both of those were huge milestones in me wanting to show those around me that I am more than what this disease is and we are not defined by its symptoms. While I am hopeful that I will see a cure in my lifetime, there is not one now but I will gladly fight it on my own terms and hopefully show others that they can as well. This year I have two 20 mile races and another half marathon that I will hopefully complete as well and continue to show other PWPs that we always have so much more to give.

The present is a gift

At the beginning of my story, I made the statement that Parkinson’s made me a better person, which is true for me. I would have never started running and had such huge accomplishments there. I had a feeling that my future was taken away from me but only to a degree, my future has only been changed from what I had thought it was going to be for many years after retirement. Only now instead of just thinking about the future and what that would bring, I enjoy each day for what it is, a gift.

I don’t take days for granted anymore and try and get as much out of them. Yup even those bad days where nothing is going right with medication or my body, I’ll use that as time to catch up on sleep or watch a movie I haven’t seen before. On days I feel good that means I can get in a run or take the dog for a walk, read a book, etc. Most of these things prior I would put off or just let the days go by almost being a spectator in my own life instead of a participant. These types of things have made me appreciate things so much more than I would have in the past which I am thankful for Parkinson’s giving me that one gem.

One other final piece of advice I could pass on is to thank your caregivers and not afraid to ask for help. A lot of them being your doctors are there to help you and succeed, the same for your loved ones. Just letting them know how much you appreciate them for all they do to help you goes a long way. If anyone would like to reach out and talk more about what works for me or just have another ear to listen please feel free to reach out to me. My email is below.

Thanks for reading,

Charles Chastain

bigtyrez@gmail.com

Happiness even with Parkinson’s

happiness - girl holding balloons

As the founder of Parkinson’s Warrior (the book, the Facebook group, the website), I’m often asked how to find happiness in life while living with Parkinson’s. I believe happiness is possible, and that your life could be much more than just struggling with a disease. Here are 5 steps to happiness that I’ve found while living with Parkinson’s.

Step 1: Find your why

The first step in finding happiness that is long-lasting is to find out why you want to be happy. Finding your “why” has been a concept for a very long time – why do you want to live? why do you want to feel well? why do you hope for a cure? – these are very old philosophical questions. Recently, asking “why” came back into vogue thanks to a book by speaker, Simon Sinek.

Ask yourself why you want to be happy. Is it to be at peace with your life? Is it because you hope for a cure with optimism that can’t be beaten? Or maybe it’s a selfless act to ease the burden on a loved one. Why do you want to be happy? Keep that in mind…

Step 2: Check your attitude

Attitude is everything. Approaching Parkinson’s with a positive attitude is the most important thing you can do when seeking happiness. Yes, it’s true that you are afflicted with an incurable illness. Yes, it’s true that you have your good days and bad days. But guess what? Despite all of this, you can still choose to have a positive attitude. That’s right, you can CHOOSE to be positive instead of expressing yourself negatively.

An infamous example is when I had DBS surgery in 2018. I call this infamous because I’ve told this story many times to many different groups of people, and many have recounted this story to others. When I went in for my deep brain stimulation surgery, I was prepped and rolled into the operating room. It was a scary and sterile place, with a dozen people standing around ready to do their thing. I certainly had to draw up some courage for that situation. After all, this was brain surgery. The surgeon looked at me as I laid on the gurney, and asked, for verification purposes I suppose, what I was here for. My response: “You’re going to put a couple of holes into my head!” In the scariest moment of my life, I chose to say something funny. I CHOSE it. The surgery went well, and I was glad I had chosen positivity in that moment as it helped set the stage for my recovery.

Step 3: Start self-healing

Since Parkinson’s currently has no cure, self-healing means being at your best, physically, cognitively, and emotionally. Eating well (no fad diets for us, we have particular needs that require certain levels of proteins and carbs), exercising (again, no fad fitness machines – walking, weights, yoga, and specialty boxing are best), playing games (crosswords, sudoku), reading and writing (help ease anxiety and depression), and reducing as much stress as possible, will all help with being at your best.

These activities will not only make you feel better in body and spirit, but they’ll also give you a rush of dopamine, serotonin, and endorphins, which will make you feel happier.

Step 4: Find your community

Whether you’re an introvert or an extrovert, being out among people is essential to your health. At the most basic level, going to your local Parkinson’s support group could improve your mood and make you happier. From there, the sky’s the limit. Depending on how you feel, you can join meet-ups with people practicing your favorite hobby, you can go to family events (an important link to your past), and perhaps other Parkinson’s events. Even sitting alone in a crowded cafe can make you feel happier and more connected to the world.

Be sure you don’t let the disease stop you from doing what you love. Perhaps you need to do things a little differently, but you can still find some aspect to be engaged in. Find people who will support you and lift you up. Finding and maintaining a strong community is important for your long-term health, as well as for your long-term happiness.

Step 5: Prepare for setbacks

Always remember that happiness is not a moment in time, it’s a long-term feeling that keeps you optimistic in hard times, hopeful when things look hopeless, and open when all you really want to do is curl up in bed and shut out the world. You have Parkinson’s – life won’t be a series of upbeat moments, puppy dogs, and ice cream. You will have setbacks. There will be days you don’t want to get out of bed. That’s ok – you should expect these things. But staying upbeat will help you get through trying times.

There are so many variables to finding happiness, and it’s tough enough for people without Parkinson’s. For us Parkies it is a little bit tougher, but it can be done! Go out there and be a Parkinson’s Warrior. Figure out why you want happiness, be positive, exercise and eat well, go out and find people to share your life with, and don’t be discouraged by setbacks. You can do it, I believe in you! Keep fighting and never give up!

 

Parkinson’s LifeKit is available now on the App Store.

Join our Parkinson’s Warrior community on Facebook!

Buy the Parkinson’s Warrior book on Amazon!