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!

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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.

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Is Revealing My Parkinson’s Diagnosis Career Suicide?

Work is extra stressful with Parkinson's

When I was diagnosed with Young-Onset Parkinson’s Disease in 2011 at age 33, I was full-swing into my career as a media studies professor in California. Up until that point, I had been writing for journals, speaking at conferences, and applying for tenure-track positions. That all changed once the symptoms became too much for an ambitious young academic to bear.

I suddenly went from outspoken and involved to being someone who barely had the stamina to make it through an 8am lecture. I thought my career was over. I decided I would need to disclose my diagnosis since it was obvious that something was wrong. To my school’s credit, they sought to accommodate me by switching me to teaching online courses. I knew my dream of becoming a full faculty member was likely over, but at least I could still teach and write.

While I was able to continue working in a more limited capacity, many of my friends in the Parkinson’s community have not been so lucky. My support groups are filled with examples of people diagnosed in their 40s and 50s, and asked to retire or who mysteriously became the only victim of an unplanned layoff. This type of discrimination is illegal but proving it is extremely difficult and often not worth the stress to someone with serious health problems.

By 2015, I had sufficiently grieved the loss that came with learning I had an incurable chronic illness, and I thought it was time I tried to be more of my old self again. For me, this meant fighting back against the illness – staying fit and healthy and trying to live my best life. It might come as no surprise to those who know me that moving forward also meant using my experience in a meaningful way to help others; in other words, advocacy.

In order to be an advocate for people with Parkinson’s – to raise awareness of the illness, support efforts for a cure, help others with the illness, and help develop empathy in those without the illness – I knew I would need to go public with my diagnosis. I’m well aware that anything published on the internet is likely to be up for all time, so this bears the question: Am I sabotaging my own future by so publicly revealing my diagnosis and being so readily defined as someone having a serious illness? Will future employers search my name online and find out I have Parkinson’s? Actually, I certainly hope so. Here’s why.

  • I have Parkinson’s and I can’t hide it. What is the use of keeping my illness private if it is quite literally written on my face? Hiding it could make sense if I lived in a small town, on a farm, by myself, and wanted to be left alone. But I don’t live on a farm. Instead, I live a somewhat public life through my writing, my teaching, my advocacy and political work, and on social media. If we meet in person, the elephant in the room, so to speak, is out of the way, and we can move forward immediately.
  • Future employers can see how hard I work on things I’m passionate about. Everyone seems to want to curate and control their online presence these days, and for good reason. Employers are known to look at social media to see what their applicants and employees are sharing publicly. Searching my name will return results about the book I’m writing, the app I’ve written, the website and news feed I distribute, and interviews I’ve given. Wouldn’t you want someone like me on your team?
  • Instant recognition. Back when I was trying to hide my illness from the public, I had an experience that really affected me negatively and changed my thinking. In 2013, I decided to apply for the MBA program at the University of Washington. Not telling them about my illness, I was invited to their group interviews – essentially, I looked good on paper, and they wanted to know me in person. I hadn’t started taking medications at that time, and after struggling with stiffness and slow movements, I was later rejected from the program because they said I seemed “bored and disinterested.” I tried to explain my illness to the program directors and asked them to reconsider but they would not. The next year I applied again, making my illness clear in every essay and during the group interview. This time I was accepted and eventually was voted by my class as a class representative, won a social entrepreneurship competition and was well respected by my peers and by the program officials. The bottom line: without sharing my illness, I never would have even gotten my foot through the door.
  • Living an authentic life. I am very much into living an authentic life. I consider myself an honest and loyal person, someone who values fairness, and who wears his emotions on his sleeve. I’m not interested in hiding something like a major illness from the world. For better or for worse, Parkinson’s and I are connected, likely for life. Everything I do in life will be viewed in light of the fact that I have Parkinson’s. In many ways, this brings purpose to everything I do. For example, I have run for public office in the past, and if it seems appropriate, I may so again. The people who are my would-be constituents must know that having this illness, I don’t take on obligations or projects willy-nilly. Instead, I ask myself “can I make a difference,” and only commit if I know I can. If I run for public office again, it would be with the fervent desire to work with purpose, or else I would see no point. The same is true for anything I do in my life.

I believe that revealing my illness to the world will do more good than not. While I’m worried that I might be underestimated by someone who doesn’t understand Parkinson’s, I’m not afraid to be labeled as someone with an illness – having Parkinson’s has led me to help inspire thousands of people struggling with this disease, so I wear it as a badge of honor.

Now that’s something worth revealing.

Join our Parkinson’s Warrior community on Facebook!

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

Does CBD Really Work for Parkinson’s?

cod oil is sld everywhere, even gas stations

There has been a lot of excitement around the possibility of using CBD – the non-high-inducing other half of marijuana – as a natural treatment for Parkinson’s. People with Parkinson’s online have long celebrated CBD as a way to treat a variety of symptoms related to the disease. And now that CBD is legal in most of the world (read: not everywhere yet), and as more and more people come to realize that CBD is not the high-inducing substance in Reefer Madness, more people are trying it to calm symptoms.

Does it work?

The real question is, you guessed it, does it work? Well – officially – the jury is still out on it. When I say officially, I mean science – real science, backed by real experiments and using the scientific method. Why is this important? Because in my 10 years with Parkinson’s, I’ve seen this before. Someone says, “I’ve tried this and it worked for me,” and then everyone piles onto the XYZ train and all sorts of claims appear, and snake-oil salesmen are quick to sell us what we think we need. I’ve seen it with Low Dose Naltrexone (also known as LDN), supplements like Vitamin D and Fish Oil, and in the end, the effects of these on Parkinson’s were inconclusive at best.

Drugs work, though

When someone is just diagnosed with Parkinson’s, often the tendency is to not take medication at first and explore all non-pharmaceutical options first. This is a great strategy – long term use of Carbidopa/Levodopa leads to severe dyskinesia (think Michael J. Fox). So it is understandable that you would want to delay taking pharmaceuticals for as long as possible. However, it should be made clear: medications DO work. If you’re looking for instant relief from Parkinson’s, there is nothing like a dose of Carbidopa/Levodopa to alleviate symptoms. So there are tradeoffs here, just like with everything in life.

But so many fans can’t be wrong!

People who use CBD to treat everything from dyskinesia to tremor and stiffness tend to swear by it. It works for them. Again, this is one person who has had one experience. We need a lot more research before we definitively say that CBD helps with Parkinson’s. The cynical Parkinson’s patient inside of me says that if CBD really did something to our bodies and minds, we would all know about it and big pharma would be rushing to cash in. Instead, CBD is on the shelves at pharmacies with other supplements that carry the “claims not supported by the FDA” disclaimer. On the other hand, CBD’s cousin THC is outlawed in so many jurisdictions BECAUSE it is a powerful substance that alters body and brain activity.

As with everything, a bit of skepticism goes a long way

This article is not here to say “don’t waste your time and money on CBD.” Actually, quite the opposite; try CBD and see if it works for you. It may work, it may do nothing, or it may cause you to experience the Parkinson’s Placebo Effect – thinking something is working because you want it to work, hence boosting dopamine levels – until you crash back down to earth.

You can’t manage what you don’t track!

The best way to see if CBD is working for you is to track your symptoms over time while using it. I would, of course, recommend using the Parkinson’s LifeKit app to track your central nervous system, cognition, mental health, and tremors and dyskinesia over time to see if CBD is having a real effect. A week would be too little time, thanks to the placebo effect, but a month or even two is the best way to see if CBD is working for you.

The Dread of Diagnosis

a doctor tell a patient that they have parkinson's

Here’s a story you may relate to…

You have been feeling some minor shaking or a little bit of stiffness in your hand or in just a finger for a couple of months now. You initially write it off as stress, getting old, or maybe you pushed yourself too hard at yoga. However, it’s now more than just a mild nuisance; it affects your typing and your significant other has made a comment about it, adding, “maybe you should get it checked out.” You visit your doctor, and after a thorough check-up, your worst fears are confirmed: “we don’t know what it is, but it’s probably stress, or you’re getting old, or maybe you over-worked your hand in yoga. Take some ibuprofen and let’s check it again in six months.”

Sound familiar so far?

This is the experience for many of us with Parkinson’s. Parkinson’s is not a disease like Cancer or Diabetes. It cannot be definitively diagnosed with a scan or with a blood sample. Although there are clues in the blood and a scan can show some reduced activity in the areas that the disease affects, There is no magic bullet diagnosis tool (not even Parkinson’s-sniffing dogs or the so-called “Sinemet Challenge.”)

This leaves us, the soon-to-be-diagnosed person with Parkinson’s a lot of uncertainty, especially when stage one Parkinson’s mimics other illnesses that could be much worse (MS, ALS, Huntington’s). Our doctor finally sends you to a neurologist or a movement disorder specialist, and this person can usually give a likely diagnosis of Parkinson’s (or at least Parkinsonism – the symptoms themselves) within an hour. They have one job – to recognize and treat this disease.

You go home, you cry, you mourn the future you could have had and now you most certainly will not. You tell your family, you tell your friends, you do your best to hide it from people at work. But hey, you’re hip to the new therapies. People online say exercise and diet are critical… you can beat this thing! You sign up for yoga classes and boxing lessons. You adopt the Paleo diet and add fish oil and curcumin to your daily supplements. You think you’ve found something millions of others have missed. You’re going to beat Parkinson’s. You’re doing better already!

This is grief talking; denial, to be exact.

There is no cure for Parkinson’s. Even if you do everything recommended, you’ll still have good days and bad days, new symptoms that seemingly appear and disappear at will. You do not know how you will progress, and no… despite what you may have heard, there is no cure.

Sounds pretty grim, doesn’t it? Well, for most of us with this illness, this is how we started out. We all were scared. We all felt alone. We all mourned the future that would never be.

But something happens along the way…

You realize that Parkinson’s is not MS or ALS – you will not die from it. There are people who were diagnosed in their 60s who lived into their 80s and 90s. I know some of these people, at my support groups in person and online. Most of these people took some time to mourn, and then they picked themselves up and made an active decision to continue living life.

That’s the thing with Parkinson’s. You can continue living life. Travel, work, and be yourself. Yes, you will get tired more quickly, you may need voice dictation software for your computer, and you may need to slow down, but you can live a full and happy life, even with Parkinson’s. You may even find a new life purpose: advocating and raising awareness – sharing what you know with others. Many of us move on to this step in our grief cycle after we have arrived at acceptance.

Ultimately, just like Parkinson’s itself, everyone will experience those first few months of symptoms differently. But find solace in knowing that many have traversed this path before you. You are not alone. Be scared, but don’t let the fear derail your life. Allow yourself to open up to people who want to help you get past this initial jolt. One day, you will pay it forward for someone else.

If you’re in search of a group of very accepting people with Parkinson’s, join us on Facebook and come share your story.