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!

What does hope mean for People with Parkinson’s?

hope, the word, written out on a beach

Since Parkinson’s currently has no cure, there is a huge reliance on hope in the community among patients and caretakers. Everyone seems to be waiting for that moment when the front page of the New York Times reads “Parkinson’s Cure Discovered!” in huge letters. I can safely speak for the entire Parkinson’s community when I say we are anxiously waiting for that day. But until that day arrives, what is it we actually hope for? What does hope look like for someone diagnosed with Parkinson’s a decade ago, or even just a month ago? Hope could mean different things to different people. Ultimately, I think hope means hoping to have a good life without Parksinon’s interfering too much. Here are some things to hope for as People With Parkinson’s.

Hope for a cure

Of course, first and foremost, we’re looking for a cure. A cure could mean different things, however. When we think of a cure for Parkinson’s, we might think it’s a single pill we take that magically gets rid of the symptoms. A cure might also mean some kind of brain surgery where something is implanted and BOOM, you’re cured. What does it even mean to be cured? Since Parkinson’s is difficult to diagnose in the positive, to begin with, it would be extremely difficult to diagnose it in the negative. Could a drug we take daily for the rest of our lives that minimize symptoms and makes us feel like we did pre-Parkinson’s? When we in the Parkinson’s community talk about a cure, we’re talking about a long-lasting, disease-modifying solution. I think that if most people saw me now after Deep Brain Stimulation surgery, they would not suspect I have Parkinson’s. However, turn off my stimulator and BOOM, I have Parkinson’s again. DBS is not a cure.



Hope for an almost-cure

Many people in the Parkinsons’ community would be happy with an almost cure. I had particularly great results with Deep Brain Stimulation, which I would see as an almost-cure – it’s something that needs to keep working for us to feel relief from symptoms. If I turn it off, it stops working. I feel that the pharmaceutical industry might be satisfied to find a drug that people take their entire lives to minimize symptoms. This helps them have recurring revenue – each month you must refill your prescription and they get paid. There is a reason to hope for this as a potential solution. Drug companies are experimenting with already-approved drugs that can be used off label to treat Parkinson’s. These drugs might already be used for cancer or diabetes, and so they may already be approved by the FDA, meaning drug companies can skip the early-stage trials and move straight to trials that test for effectiveness.

Hope for symptom relief

If we can’t have a cure or an almost-cure, many would at least hope for something new that allows for symptom relief. New drugs are being developed all the time, and many of them offer new ways to take existing drugs, meaning more instant relief and fewer side effects. The gold standard, carbidopa/levodopa has been reformulated many times into fast-acting versions, slow-drip versions that last all day, and more. There is also new research that suggests exercise is even better for Parkinson’s than previously thought. People With Parkinson’s are often advised to increase exercise since this will likely slow down the disease, and reduce symptoms over the long run. There is also new research being done with natural remedies like CBD oil that offers some promise. This is good advice and a reason to feel hopeful!



Keeping hoping, keep learning, keep pushing

One thing is certainly true with this disease – the moment you give up hope, that’s when you’re done for. Never stop hoping that a cure could be just around the corner (it might be!), never stop learning about new therapies, and new things in the world of Parkinson’s, generally. Also never stop pushing yourself, your doctor, others with the disease. We’re all in this fight together and the more we push each other, the quicker we’ll come up with a permanent solution to Parkinson’s.

Don’t stop hoping!

Join our Parkinson’s Warrior community on Facebook!

Buy the Parkinson’s Warrior book on Amazon!

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

Bio-hacking Parkinson’s Disease

seniors biohacking parkinson's

This originally appeared on Medium.com.

Parkinson’s Disease is an incurable progressive movement disorder that leaves the body unable to move. As anyone with PD will tell you, the disease affects you differently each day, and this leads to added stress, frustration, and depression. After a while of living with the illness, it’s difficult not to think you’re at your life’s end each time a new symptom appears or an existing symptom worsens. You begin to think, “Is this a part of a temporary phase, perhaps caused by over-exercising or drinking a bit too much, or am I really at a new stage in the disease?” It’s difficult to think rationally when your body feels like s%*# and is not cooperating.

I’ll be the first to admit that Parkinson’s has made me a more irrational person. When I can’t get myself out of bed in the morning, or my morning medications don’t kick in within the usual time frame, I double-check to make sure I’ve signed my will and start thinking about how my wife will get along without me. Of course, this is the disease talking and is complete nonsense. People don’t die OF Parkinson’s, they die WITH Parkinson’s. PD won’t do me in, but don’t tell that to my irrational self.



While Parkinson’s currently has no cure, and progression is inevitable, there is one thing proven to slow the progression: exercise. Exercising at least twice each week for at least an hour can have neuroprotective effects and improve symptoms. But even when I exercise, there are days I won’t feel like getting out of bed, and my irrational brain may try to convince me that the exercise isn’t working, which could lead me to quit exercising altogether — the classic downward spiral.

Another problem with Parkinson’s is the low-information visit with the neurologist. Most people with Parkinson’s only see their movement disorder specialist once every six months or once per year. Here is how a typical 30–40-minute visit goes:

Doctor: How’s everything been going?
Me: Ok, I guess.
Doctor: Anything new since the last visit?
Me: I think my memory has gotten a little worse.

The doctor then proceeds to furiously type her notes for five minutes and then gives me a physical neurological exam — “Follow my finger with your eyes,” etc. She will sometimes recommend a medication change or give me some advice on my diet. That’s about it. For a disease with symptoms and symptom intensity that change daily, this visit is not enough to capture the whole picture. My neurologist hadn’t even seen my worst symptom, a nasty (and occasional) dyskinesia in my left leg, until three years after it started.

Something told me there had to be a better way to manage this disease. There had to be a better way to know whether my disease was getting worse, or if I was just having a bad day. I wanted to know whether exercise was really helping to keep the really bad symptoms at bay. I wanted to be able to show my doctor the data on how my brain was behaving as it related to my physical, cognitive, and emotional state on a daily basis.

I checked the Parkinson’s-related literature and found a variety of worthy bio-markers to track, but there was no book, app, or any other product that could do what I needed. I wanted to track my physical/cognitive/emotional progression over time, understand how things like exercise and medication timing affected my symptoms, and combine all of the data into a neat printout for my doctor to look at during our short visit and from which she could glean some insights.

Nothing like this existed. So I created it.

I had experience as an iOS developer, so I could make an iPhone app, but first I needed to know what I was building. I began following the Quantified Self and Biohacking movements and taking what was useful (lots of research on how to collect and use your body’s data) and left what wasn’t (lots of pseudo-science and wishful thinking about supplements and expensive gadgets). I began tracking data points in a journal — basics like when I took my medications, how long I exercised each day, and the times I felt off and on. With the help of a neurologist, a neuropsychologist, physical therapists, and others with Parkinson’s, I developed several activities (based on tests used by doctors and those in the biohacking community) to collect data on central nervous system function, memory and cognition, voice loudness, and emotional state. I then created a beta app and tested it with Parkinson’s friends in Seattle. I took their feedback and reworked the app until it was exactly the app we all agreed we needed.



The result is Parkinson’s LifeKit for iPhone. The app includes activities that you can use daily to track a variety of biomarkers, the ability to track medications, and a way to combine the data into a report for your doctor to review for a more personalized medical experience. Each data point can also be tracked within the app itself, either as a chart or as the raw numbers. Finally, if you’re a data geek, you can also export your data to an Excel-compatible file to run your own advanced analyses. The app can be as simple or as detailed and involved as you want to make it.

I began using the beta of the app in December 2016, after I had added the various tracking activities. I began recording each time I took medications (the app makes it easy to track difficult and irregular medication regimens) and tracked my central nervous system health several times per day, and my cognition and emotional state once daily.

After a month of tracking my health, I noticed some trends.

First, my central nervous system was always worst in the morning. I knew this intuitively — I’m not a morning person — but this confirmed it. Now I never take a meeting or set an appointment in the morning, and this has helped relieve a bit of stress knowing that I don’t need to be on when my body just doesn’t want to be on.

The second trend I noticed is that, on days that my overall step count was above average (I use the free app Human to track my steps, and Parkinson’s LifeKit can read that data through Apple HealthKit), the next day’s step count was always below average — always. After thinking about this for a while, it came to me that when I overdid it on the exercise one day, I would be more tired and less capable of meeting my step goal the following day. This has been an important insight. Using step count data as a proxy for stamina and the short-term effects of exercise on my body, I have rescheduled my exercise on days that I don’t need to be at full-energy the following day.

The last trend I noticed — and this was the most unexpected of all — was a general upward trend in my central nervous system health. I had recently begun a twice-weekly exercise class geared toward people with Parkinson’s, and my central nervous system (as measured with the app’s finger tap test) was actually improving. This told me, in my own personalized study, that exercise was benefiting me over time, even if in the short-term exercise made me tired the next day. This was the insight that made me realize that I had stumbled upon something incredibly useful for the Parkinson’s community.

These days when I wake up feeling out of it, and I feel like I can’t trust my own emotions to tell me how I’m doing, I look at my 3-month chart and remember that I’m not doing too badly and that today is just an off day. This has alleviated a lot of worries and has made me rethink the idea of getting Deep Brain Stimulation surgery, at least for a while. I can look at the objective results in the app and not work myself into a panic that my body is failing fast. And for someone who sometimes still thinks irrationally about the disease, this has added a new level of comfort to my life.

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!