During his first inaugural address in 1933, American president Franklin D. Roosevelt famously said, "All we have to fear is fear itself." I wish it were that simple when it comes to Parkinson's Disease, but as I approach the three year anniversary of my diagnosis, I have come to believe, at least at this relatively early stage, that much of what I have to fear is fear itself. I do not for one moment mean to minimize the horrific experiences which many of us deal with on a daily basis. I do not for one moment expect my "honeymoon" to continue indefinitely. However, if I could go back and talk to myself three years ago when I worried about Parkinson's every single minute of every single day, I would tell myself not to be so fearful. I would tell myself that three years later I would still feel totally normal 99% of the time. I would tell myself that fear and anxiety make my symptoms much worse. I would tell myself to live in the present moment and not to live in fear.
When I voted in the presidential election in November of 2020, I was terrified at the thought of having to sign my name in front of someone at the voting station. Although my handwriting was absolutely atrocious, it was at least legible if I was alone in a room, calm, and able to take my time. But as I approached the election judge and tried to sign my name, my hands literally dripped from perspiration as I muttered something to the election judge about having Parkinson's Disease and not being able to write very well. Sure enough, I couldn't even make the "J" at the beginning of my first name. It was a scribble one might expect from a three year old with not a single legible letter. Even though I live in a small town where the election judges actually know me, my fear was fueled by anger that my vote might be discarded because my signature did not match the signature on file and/or that I appeared utterly incompetent based upon my signature.
Another annoying symptom I deal with is that at approximately 1:00 p.m. every day, my right shoulder blade "tightens up" to the point that I need to lie in bed or in a recliner for awhile just to relax and let it loosen up. But guess what? It mostly happens when I'm sitting around thinking, "Crap. It's getting close to 1:00. My back is going to tighten up soon." When I am busy (whether having fun on vacation or occupied with an activity of some type), the one o'clock hour passes completely pain free. I'm convinced that my anxiety regarding pain actually contributes to the pain itself.
I'm still not sure if it's the coronet red light hat I wear twice a day or just dumb luck, but my signature and handwriting have returned to normal, even more than a dozen hours after my last dose of sinemet has completely worn off. As of now, I absolutely know that I can just write just fine and, sure enough, I can write just fine. In contrast, when I was fearful and absolutely knew that I could not write....I could not write.
I know that PD is a horrible disease, it gets progressively worse and is incurable, at least as of now. I also know that fear and anxiety make my symptoms worse and I think fear and anxiety may very well contribute to faster progression of worsening symptoms.
It isn't all we have to fear, but at least for many of us relative "newbies," MUCH of what we have to fear is fear itself. Let's try not to be afraid.
Written by
jimcaster
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Being a compulsive worrier I can relate to your experiences. The fear is a killer even though it serves to protect us in life threatening situations. I try to deal with it by deep breathing (supposedly to release oxytocin) and worry hates deep breathing
I don’t buy into the fear based “honeymoon” theory one iota. My neuro at Stanford told me I could go 20 years or more. I’m 4 years in and in better shape than when I was diagnosed. Many of my early symptoms have reversed. Keep the faith- JG
I just take Sinemet and Mucuna. Regularly at night to help me sleep, and during the day as needed. Every 6 hours and away from food. My goal is exercise and/or physical training 2-3 hours per day and keep meds minimal.
Thank you and same here. Six years in and also better than when I was diagnosed.
I do not think that Parkinson's is a horrible disease. I think it is an interesting impairment. It forces me to pay close attention to how I move. It makes moving slowly, carefully and mindfully a necessity. Making a virtue of necessity.
“Could go 20 years or more” I believe that to be true. I often tell myself, “I have 20 years” likely 10 years meds then 10 years more with DBS or FUS. It is hard, very hard to take solace in that when diagnosed young as that will put me at 65. I pray that within that 20 years treatments and meds can protect my brain enough to add an additional 10 years of my having reasonable cognitive and physical functioning. I sure hope so.
It would be interesting and potentially helpful to know how you reversed your early symptoms.
Yeah Stanford is ok. In late 2017 my primary doc referred me to their Movement Disorder Clinic. It’s 1.5 hour drive from my house but I only go there once a year so what the heck. The neuro I see is pretty great: knowledgeable, super smart, and a nice guy. Once a year he gives me a 15 minute exam and I get to ask him questions for 20 minutes. Last time my wife accompanied me and they let her into the treatment room. So she got to ask questions too. She really enjoyed it. That was January 2020, just before the Shut Down. In 2021 I haven’t gone due to Covid restrictions.
He likely has no genetic explanation for PD or has the Parkin gene which progresses especially slowly. Not trying to be a total downer just realistic. But, by 20 years from now there will be improved treatments so that can add more time. Going from fear and anger about limited time to gratitude for the time I have is hard but I’m determined to make the shift and am doing it. The future is not promised to anyone. Every new day is a gift to be savored.
Wisdom in what you say. Your observations are correct. To the newly diagnosed I say
Do not be afraid, but face it head on and never quit. It does not have to be the visible center of your universe, especially not for others, but make time for things you need like rest and exercise etc.
There is a way around every problem , solutions that at one time would have been unacceptable or you would not admit become viable.
Here is a silly example but it is a bunch of things like this all piled on top that are the problem.
Problem: You can't cut the lawn , you are exhausted and there are too many tasks just to prepare for the job and other jobs need to be done. Obviously there are a hundred solutions to this but you keep making the same one (starting the lawn mower) .
( buying smaller light battery driven , to getting someone else to do it ,to selling the estate never considered )
You will need support, are you worth supporting, are you a source of generosity , love and joy to others, or are you demanding and in charge because you feel vulnerable.
Be happy, (sounds ludicrist doesn't it) Happyness is a state of mind. You can be happy if you have a mind to. This year in August will be the 20 th year since my diagnoses. "Its not easy being green " Kermit the Frog / Jim Hanson
What meds are you on? I'm not on anything yet and I'm afraid of things getting worse from side effects of meds. I take alot of supplements and was diagnosed in 2017 with Parkinsonism. Thanks
Hemp oil CBD/THC & solid rub CBD as required every day sometimes twice
I use them so that I can function. Started taking very small amounts and increased the amount when my Neuro suggested. I took it to stop the PD from interfearing too much with exercise and function. With out the meds I would be already dead from Phumonia. I would have been a frozen , shaking source of wimpers in a dark corner. It would have been wonderful to avoid the side effects, falling asleep instantly, deep rashes and dry skin , and a host of other things but it was not possible. There is a reason they do not call this Parkinsons Inconvience . Push it with out meds if you want but there are studies that all have same results that show that all the years that you went without taking meds. account for nothing. Abstention does not increase the amount of time you can take meds, nor do they do damage to the degree that it is unjustified to take them. Old wives tails, still found in cheap text books.
I have watched how your posts have changed over time with wisdom coming on strong this year! I am very impressed in your growth as time passes and you are sounding like you are getting comfier and comfier in your own skin in the face of adversity! You are adapting to what is in front of you like it is now second nature for you and I can see that I can learn a lot from you! You are showing me my limitations and I can only hope to adapt as well as you as time passes!
Gym Bag, as someone with 20 years experience, hearing your perspective and experience is especially helpful and greatly appreciated. I am learning from you. Thank you
When my husband’s depression and anxiety was at an all time low, his Parkinson’s symptoms went through the roof!
Having the reassurance from our Parkinson’s nurse, plus starting on an antidepressant and Madopar has brought him back from being unable to shower and dress himself to exercising 5 days per week and playing tennis twice weekly, although he has been having a few balance issues lately while running backwards on the court, but we’re working on that.
I just say to him to not worry about anything and let me do the worrying 🙂
He also uses the coronet red light hat and we’ve just bought the Apolloneuro device to help with the anxiety.
It’s a wearable device worn on the wrist (or ankle, but could be mistaken for ‘out on day-leave’ 😆) that uses gentle vibrations to help retrain your nervous system over time and therefore reduce stress and anxiety. It has seven different modes to help with various conditions like insomnia, anxiety, meditation etc.
But as I say, we’ve only just bought it so if it’s half as good as they say, we’ll take it!
Just google ‘Apolloneuro’ to read the science behind it.
Well said Jim.I also see it as truely accepting the disease then you are able to let it go and live in peace. And be calm. A calm mind is still and from the stillness comes acceptance.
You are so right Jim. I am thirteen years since diagnosis (probably a lot longer with the disease) and am doing fine as long as I don’t allow myself to get too tired or stress about things. I have learnt that I need to give myself a purpose in life and keep busy. I acknowledge that I am one of the lucky ones and give thanks for that. It is important to respect the illness but not to let it ‘own’ you. I live alone since I lost my husband and I have realised how important it is to plan for my own future. I call the shots not Parkinson’s.
I have never been fearful! I am truly thankful that I was not diagnosed with motor neuron disease, which would, for sure, make me terribly anxious, and terror-stricken! This is not stated to minimize the trials that PD has put me through, already, five years after diagnosis! The way I handle losses, like small handwriting, is to NOT dwell on what I’ve lost, but rather, focus on adapting, and making the best of what I can do.
Great post Jim, anxiety or fear of something that may happen or you think is going to happen can be relentless. I m glad you’re getting some relief from your coronet, my husband still uses his although now he seems so busy sometimes finds remembering to do it a problem.My husband worries just the same about the anticipation of doing something he is unfamiliar with, seems to bring out all those insecurities. Once he goes ahead and does it he’s usually fine although he gets annoyed by the things he can’t do as well as he used to like gardening or woodwork but it doesn’t stop him, just goes more slowly!
Brilliant post and thank you, more conversations like this could be as helpful than all the threads about supplements, clinical trials, etc.
I have just recently discovered that I CAN choose to be happy, positive, and put fear aside. Diagnosed for 6 years now, I’ve lived most of that time with worry and fear. Even those things I’ve been doing to slow progression — exercise, diet, supplements— have been fear driven, thus obsessive, thus stressful...
But I’m learning...
I have had a worry mind for as far back as I can remember, and depression for around 20 years. Now when I notice my mind getting into future (always catastrophic) imagined scenarios, I start saying “yada yada yada” to my mind until it lets the story go. Or if I’m listening to music, I imagine my thoughts are musical notes floating away.
Everything positive I do during the day, I congratulate myself. If I’m feeling sad or lonely I talk gently and lovingly to myself as if I were a child or a dear friend. I practice being grateful, even for the disease that is teaching me to be kinder to me self and others, and stronger in the face of adversity. Grateful for the parks and trees when I go for hikes, for the friendships and family relationships that have deepened, for just being alive.
Jim, That is so eloquently put. I am a “cart before the horse” girl , worrying about things that may or may not happen . I had a panic attack at the grocery store when I realized there’s no more checkers , that you scan and bag your own. I made it worse then it needed to be. I’m always thinking someone is looking at my shaking hands or my stiff smile but half the time they don’t notice what I’m worrying about. I wish at 9-10 years in I could say I feel like myself 99% of the time but I think I can say 75% 😊. The anxiety is so new for me and I don’t like it. My dr offered to prescribe me something and I said no , that I don’t want to add another pill. I am learning some strategies. I am starting the testing process for DBS. We will see. Take care my friend and enjoy today . ❤️ Karen
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