Private Tremors of the Frozen Man

“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”
-Eckhart Tolle.

It’s been some time since I’ve written about Parkinson’s disease. Not that it stocksnap_xdc3h2ph0y-1_optdoesn’t want to be heard as it does make itself known but I tend not to give it a voice and I really should give it it’s due for awareness is the best medicine. This post also comes as a special request. So to my benefactors, here goes.

As with many other disorders, especially cognitive, outside appearances can take on an air of normalcy, like nothing is wrong. But as in the adage, don’t judge a book by its cover, don’t judge a Parkie just by Tremor. There’s more that goes on than one wants to admit, hidden in the depths of a brain running low on dopamine.

The most telling outward sign that someone might have Parkinson’s is a hand shaking uncontrollably, called ‘tremor’, it can affect either the left or right hand or both. Another sign may or may not present itself as difficult is walking which is prevalent in my situation.

I walk in short steps, my shoes wanting to drag or skip the floor or pavement, arms not moving. I look very mechanical with my back and head slouched forward. In a way, I look like I’m frozen. I’m currently going through rehabilitation to actually learn how to walk properly.

From here on out the symptoms are mostly hidden…

Anxiety and depression come to me in the early hours of the morning. I can’t sleep from fretting over all I need to do and getting more and more overwhelmed. And I’m anxious over things I’ve done a thousand times. The next morning I have to laugh at the fear that was coating my mind. I take medication for this and it does help.

Difficulty sleeping affects me. I can go to bed at any time and I will wake up after 5 hours of sleep, like clockwork.  In addition to a lack of sleep, I get restless and can fatigue easily;  but neither of these seems to cause or aid in the difficulties of the others as you might think fatigue can help me to sleep a bit more than I do but that is not the case. On some nights, I can get up 4 or 5 times to use the bathroom. Drinking less hasn’t an effect on it.

At times when I’m usually relaxed at night-time, my arms or legs move involuntarily for no reason it seems. Just a movement out of thin air. This is dyskinesia.

Lack of cognition has been the most unsettling symptom of Parkinson for me from forgetting what’s being said in a conversation to not understanding simple words or phrases. You feel lost from this unsettling notion of your daily life as they become embedded in a quagmire of hopelessness. Thank goodness for Parkinson’s old standby medication, Carbidopa-Levodopa for I can think and remember. As a dotted line from cognition issues points to changes in my speech patterns.

I frequently get muscle spasms especially when trying to get out of bed. And along those same lines, my sciatic nerve will act up without notice sending a sharp pain down my leg. Stiff muscles and slow moments are the norm in Parkinson’s but especially during muscle and nerve contentions.

Last of all, for now, is I’ve lost most of my sense of smell which makes tasting food quite difficult as they go hand in hand. In fact, I’ve noticed a craving in me for sweets like chocolate and for spicy foods. Now I’ve always liked sweets but it’s taken a drastic turn. The cause of this, I’ve learned is a loss of smell and taste. Your body craves in excess what it can’t taste anymore.

So it is as of this day. I’ve always advocated not complaining and this is probably the most I’ve said about my ongoing symptoms to anyone except my neurologist. There are other symptoms not local to me as of yet. The ones I’ve listed are my day in a life.



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I was officially diagnosed with Parkinson’s disease on October 29, 2012. These are my thoughts on Parkinson's and a variety of subjects.

61 thoughts on “Private Tremors of the Frozen Man”

  1. I don’t see this as complaining. I have an uncle in his miss 70’s who has been suffering from this for enough years I don’t remember. My mother’s brother. He lives quite far away so I don’t see him but my mother recently flew there and is afraid it will be the last time. They are very close. Your helped me understand better what he is going through. It seems like a very uncomfortable affliction having uncontrollable body motions. It has also affected his speech and can hardly talk above a whisper. We all have burdens to live with that take a lot of determination to overcome? No, not overcome. Live with and still find happiness and value. That’s not always easy. I liked the James Taylor song. I thought I’d heard everything he did, but I don’t remember this one. Thanks and keep on truckin’

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    1. Yes, to live with an affliction and still find happiness. In a way, it better enables one to dive deeper into joy than what was known before as simple things grant you new meaning in your life. All enabled by an affliction. The universe does have a weird sense of humor. I wish your uncle many more pleasant days. jc

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      1. None of us make it through life in good health although for some it can be sudden. I think one of the wonderful things that happens as we age is acquiring wisdom. The youth have, well, youth. Even if it isn’t a beautiful body it’s young. The bones are health and the skin is supple. You think getting old is so far away – until one day we wake up and 40-50 years slipped by. I live in a retirement community. See many that live alone and those that seem depressed just making it from one day to the next. Many get negative and gossip about others. My own mother age 84 lives here, too. It’s why I moved here and she had a stroke last April. Through losing so much she has a zest for living as best she can, with help. One has to decide what kind of life they want. The last years of life are important. It doesn’t have to be depressing with only the thought of what you’ve lost. Reach out to people with what you’ve learned about life and the trials you’ve had. Sometimes you need someone to pick you up, but sometimes you are the one to pick up someone else. That creates happiness.

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  2. Dear JC, thanks for sharing. I honestly forgot that you have Parkinson’s, which on the one hand could be considered good (you are more than the disease) but on the other hand leaves out a big part of your daily struggles. It is helpful to learn that tremors are “only” part of the symptoms, and I’m glad to read there is medicine to ameliorate most of the woes. Hope this is a good day for you!

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    1. I think that’s what keeps it all in perspective, I am more than just a disease even on the bad days but they still are all good days in the final analysisi. It’s all in how you look at it. thanks for stopping by… jc

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  3. Damn, JC. Thanks for the deep insight into your suffering. I have CFS, a debilitating illness that also affects my central nervous system and cognitive functions. To me, SonniQ’s previous comment says it best: “No. Not overcome. Live with it and still find happiness and value.” It’s what I do everyday. And though it’s not a degenerative condition like Parkinsons, it is incurable and I will carry to the end.

    For those long sleepless hours and the few hour sleep intervals with rude awakenings in the much too early mornings, I practice Buddhist meditation. It’s the best medicine. I go through the levels until I find that restful place. It doesn’t put me to sleep, but inside my element I find contentment. I took a Zen Meditation course at night college, learned the chakras and have continued for almost twenty years on my own.

    Recently, I found a piece by an American Buddhist monk on WordPress, Dan Scharpenburg, that expressed the Ch’an Buddhist principle of ‘already Enlightened’. We are capable of attaining Enlightenment, even spontaneously, without the monastic discipline. Much like the meditations you describe in your writings, I came across this understanding instinctively, through the many travels and introspections of my life. I, too, strive to reflect this in my work. But hearing it as part of the Buddhist school from a man who practiced for years in Tibet, is worth a thousand times any validation I can give myself. Check it out.

    In the meantime, keep well, keep happy, and most of all, keep sharing your journey.

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    1. Thanks, Pablo, I really appreciate your comments. it is something that an affliction can be a positive influence on your own life if you allow it.

      I have studied Buddhism for years but haven’t come across any practice that I held onto very long. So I will definitely check out your link for Dan Scharpenburg.

      I do plan on writing for years to come, I guess it’s in the blood now. I enjoy your post and look forward to the next one. Thanks, JC

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    2. When we see and talk to people we can’t know the sufferings they have. People can look well yet be so far from well. I suffered with the effects of hep c for decades until I was finally sick enough to get a liver transplant 4 years. Every day since then has been life I would not have had. I went through the new hero C Treatment and am now cured of the disease, which is an odd feeling after carrying it with me for so long. But most people don’t realize hep c destroys more than the liver and fixing that part doesn’t fix the damage done that plagues me every day. But I say to myself,”I am alive”. Without my Buddhist practice, although different from yours because they come from different sutras, I don’t know if I would have had the mental strength and confident determination to not let my illness take over and lose hope. Fortunately there is a very strong community of people that practice Nichiren Buddhism so when I need help or if someone else needs help we have each other to keep us strong. It is hard to continue a practice on your own that also deepens your understanding of your life and why it is what it is. Are you aware of Shakamuni’s sutras and why he preached what he did? Because it was like being young and going to school with one sutra preparing you to understand the next until you got to the end. Would you continue to study 1+1 when you were capable of learning physics? I’m glad your meditations work for you, but maybe there is more to learn that would help? This is just a question to think about. Be well.

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      1. Thanks, SonniQ for the encouragement. My meditations were more intuitive than guided until I studied Zen, so they are lacking. I wish I had followed a discipline earlier, but I can’t reclaim the past lost. I tried Mindfulness Training and found it too cultish with the new age guru personalities, though I learned the discipline of letting my thoughts be, not craving the good ones, as the Buddha taught, or fleeing from that which brings suffering, but to be in the Now. I am going deeper, by the most obvious route, researching the Life of the Buddha and his teachings. 

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      2. There may be aspects of what Shakamuni taught that you haven’t learned. I find that sometimes with people who studies different aspects of Buddhism. I’m going to give you the 90 version without going into his early life. When he started traveling and teaching he taught what is referred to as sutras. Like going through school it took people through a process of being able to understand. As he traveled and taught different areas clung to different teachings as though that one was the truth so today in different countries there are many types of Buddhism taught that don’t often relate to each other. In the end he said -and I’m paraphrasing “Forget everything I taught up until now They were to prepare you to understand what I’m going to teach you now” The last sutra was the Lotus sutra. The title of it was nam myoho renge kyyo – which is the meaning of the law of cause and effect.How to understand your nature. What it is and why it is what it is and how that effects everything in your existence. The monks didn’t understand what he was saying and brushed it aside. They continued on what they thought was right and those teachings, although they sound good and mystical and come with a feeling it must change things, but if you can’t change your karma you will repeat it. There is much more. It is more in tune with daily life. It is pointless to try to not want things. To not have desires. If you know the history of shakamunie – he tried that and said that want the way. The eight fold path – that is early Buddhism – mediation, thought only, doesn’t create the causes that have the greatest effects, the most powerful effects. You are cause and effect. Every single thing that every happens in your environment is the effect of a cause. How do change an effect? How do you change something before it becomes an effect. Without sounding too harsh, because all types of Buddhism sound and feel good, but it doesn’t mean it has the power to change the essence of who you are. If your faith can’t change you and show it to you then what is the point? It is like people who are positively sure that Jesus lives and he loves them and they believe whole heartedly that it is true. People get caught up in the beautiful rituals of their faith. But all sects of religion can not be true no master how much you want then to. And all sects of Buddhism can’t be right. They aren’t incorrect. They aren’t complete. No master how often you do simple math you will not learn physics. All you do is learn simple math. I have studied for 30 years. I have seen the proof in my life of the correct teaching. Go to the last sutra and study, not one in the middle. Some are so close and most have been very corrupted, like every faith man has ever had. You say – the discipline of letting my thoughts be?? Not craving good ones or fleeing suffering? Bein the now? I am sorry. Don’t be angry. I’m not trying to put down what your to do – which is impossible, but if you are serious about practicing Buddhism you should be running toward what you are trying to flee. You and I should talk. I try very hard to not appear like I’m saying I’m right and wrong. Much of what you’ve learned, to a degree is right bus it’s gone off on a path that missed the point. Can you tell me what you are trying to achieve? What are you trying to change? I don’t mean to offend you in any way. All of the buddhas teachings are not to be practiced today. The time for those teachings past just like teaching abc to someone who can read is pointless. The mind is more powerful than most people know. Don’t settle for “now”. You want to move mountains and create your future, based on your causes. When you learn how much control you actually have it will blow you away. Until later. We could move this conversation of the blog if you want. I couldn’t check for spell check errors in this tiny window so beware!

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      3. Yes, I have two, but aside from a post from my two blogs sent there I don’t have anything dedicated to Shakamuni’s teachings. It usually takes a longer dialogue I have with someone. Most of my writings are on our prison system and I have a newsletter as well on prison issues and I write to a fair amount of inmates. If you go to you will see the links to other social media. I enjoy talking about Buddhism. It is a very active faith that is applied to every day at all times, not just something we do on a Sunday. it gives us the blueprint to be able to change the things in our life that cause us unhappiness instead of asking something else to do it for us. Sorry it took so long to get back to you. I’ve been caring for my mother.

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      4. I understand. I was away for a week visiting with my 3 month old granddaughter, so I couldn’t respond to you, except for the quick request. Your bluntness led me to do some soul searching. I realize I’m not really Buddhist. I practice Zen. It is something I do everyday, all day, but it is not devotional. I base it on personal growth and experience, coupled with self discipline. I value the Buddha as the teacher, but I don’t revere anyone. I also use Mantras that I’ve developed on my own, unaware that I was creating something sacred without having had training. But they are the most effective and strongest tool I’ve found, to as you say, “change the things in our life that cause us unhappiness.”

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      5. We are not to worship the Buddha. We are to devote ourselves to the law he taught. You would no Buddha statutes in my house. Not even a picture in a book. The title of his last sutra -nam myoho renge kyo – means –
        nam = devotion to
        myoho = mystic law
        renge= cause and effect
        kyo = sound and vibration

        Devotion to the mystic law of cause and effect through sound and vibration

        I would be interested to hear what your mantras are. I wouldn’t be so quick to say you aren’t a Buddhist. If you are doing something you feel has been effective in your life and you have been disciplined in your desire to become a better person isn’t that a good thing? What is it you study to grow in understanding?

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      6. I’ve checked out your blog. I’m unsure if you are Jamie or if he’s your grandson’s father who is in jail. Your topics are very well put. But I find it hard to dwell on things that cause me so much pain and anger. I know there is a need for what you’re expressing and you do it well. The prison system in America is a monstrosity. I’ve posted some news about the injustice, the imbalanced ratio of black to white prison population, but have recently stopped following the news because it makes me sick, literally.

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      7. My name is Sonni Quick. Yes, he is the father of one grandson. If it hasn’t been for that fact my life would be very different today because I knew nothing about our prison system at all. I’ve now spent 11 years learning as much as possible and educating others. I always enjoyed writing but it took it to a different level. But you are right. It is very emotionally painful. What happened in Jamie’s life as a black child from a small eat tx town is the life of many black children. He never had a chance. His mother worked hard to raise 4 children but they also didn’t have the parental guidance at home. Black mother’s are good at discipline and making sure they respect their elders but they themselves never learned to teach self worth, value of education. Black and white, without two parents things are lacking. My own children’s early years ji raised them alone until they were 8 and 12. But the plight of black children is much worse because more go through juvenile detention – not because their behavior is worse but because the punishments dealt out by the schools is heavier for blacks. Now that one state has made it legal to give children as young as five a felony conviction for any kind of fighting what do you think will happen? If has been a long range plan to fill the prisons with black people. Hispanics too are more than whites but much much less than blacks. But now that there is already 40 prisons constructed and auctioned off to corporations for immigrants there will be many more built. Trump lied when he said crime rats had risen. It is lower than it was 27 years ago and dropping. But prisons HAVE to be kept full because prison corporations have contracts with our government promising them to be full or tax payers have to pay them for every empty bed. So new crimes have to be designed. No one will be safe.

        I have 3half black grandchildren and 2 are boys and that scares me. White people can not understand racism unless it becomes past of their life. Will they find a way to incarcerate my grandsons?

        But one very interesting facet of this, while teaching Jamie about Buddhism is when the eyes and mind opens up and you begin to understand your nature – who you are – why things happen to you – striving to understand exactly how the law of cause and effect apples to your life. Do you accept your life the way it is our do you begin the arduous journey of overcoming the obstacles in your life and creating value with it. It is not about mediation. It is not about being in the “now” or being aware of what is here at this moment. This moment only shows you the causes you made in the past. That is how you know what you did so you can try to correct it. The most important thing is having the wisdom to make the causes that will create the future you want. And when you make a determination of any kind, because there are two sides to every coin that has action and reaction colliding in chaos to stop you. How do you win? How does your determination to change your life become stronger than the karma already set by causes you made past. To actually apply what the Buddha taught before he died is hard. That is why monks choose to use lesser sutras to base their teachings. They all sounded like the right thing. They typhus you how live. They taught things like giving up your desires. Some gave away all they owned and begged for sustenance. None of these things change karma. It can make you feel good and it has an aura of peace and relation. These very different sutras in different countries didn’t have the key to make it work. They did not have the last sutra. You can’t know what you were never taught and if you don’t have the right teacher it will break your study. Without this teaching Jamie would have no idea who he is and no way to change. He and I talk a lot about why this happened to him and the need to create value with what he has learned. There is something about this situation and about him that the karma in our lives brought us together, not just for him but for me. I have lived longer than I was meant to. The only legacy we can really leave behind when we go is the effect we had on other people. How we affect their lives that they in turn affect others. You live on through them. Birth, aging, sickness and death- over and over. Cause and effect. Nam myoho renge kyo – the title of the last sutra. “Disregard everything I have taught you up until now. It was to prepare you to understand what I’m going to teach you now”. But they couldn’t understand it. All these different teachings of Buddhism there is now split men’s heads apart in ten ten directions with confusion. Still people are trying to implement the 8th fold path and teachings of Buddhism from the former day of the law which is Hinayana, which is pointless, so are teachings from the middle day of the law because we are actually in the latter day of the law for the next 10,000 years. It is the period of Mahayana Buddhism. But most people where the seed was never planted yet they yearn to see the Buddha don’t have the fortune to hear even one daimoku. But yearning gets them clouds but not close enough and they think all of the buddhas teachings are equal in importance simply because it was spoken by him. But if the now practice Zen or Shinto or any other or even mix it all into one trying to pick out the best of each will never understand what he was saying. They will probably lead better and even happier lives but fundamentally they are unable to change the negative karma and repeat their lives. You might think I sound pompous our come across as I am right and you are wrong in what you are doing, but wouldn’t it be better to find out what it is you don’t know. Because I can make a promise with confidence. Learn what I know and apply it diligently for one year. If your life is not significantly changed than what I know must be false and you should quit and i’d quit with you. Life is so damned interesting. Those people who float along being slapped around by life thinking a god in the heavens planned your life and you just go along with it is a fool. Thinking he loves you is even more absurd.

        I said a lot here. I hope it makes sense. I can’t go back and proofread on my Nook because it only shows 4 lines of text. I’m sure spell check made soup out of some things. If you’d like to talk about what you think to be truth I’m very open to that. There is always to ugt

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      8. You lost me on the last line, Sonni. I know the drawbacks of using a tablet, or in my case a phone, to write comments. I fill in and replace as much as I can as I read, but I don’t think you finished the last thought.

        At the least, I’m not open to offers of teachings that will change my life. I’ve found, as you say, there are too many teachers. The things I’ve learned don’t have a name. It is a work in progress. One day I may become a Bodhisattva, like yourself, able to teach others, but it is a personal journey.

        There are realities in life we don’t like. Exploitation by the prison system is one of them. A society that devalues the poor is another. To make my life a bed of needles fighting causes is the opposite of what Buddhism has taught me.

        It’s true of every religion, that the versions we practice today are corruptions of the original. Each branch offers a different fruit. I find this in Buddhism as much as in Christianity and obviously Islam, with its insistence that it is a religion of peace while radical Islamist declare war on humanity. It’s a ball of yarn with many threads and I don’t intend to unravel it.

        I take the Buddhist monks violently protesting in Myanmar in recent years as an example. Allowing anger to overtake us, even in the desire for justice, brings suffering. Finding peace is an eternal quest. Offering to remedy it by protesting the present Maya is futile. I don’t understand what they’re thinking. It’s not genuine and it speaks to what I think you mentioned as a breaking down of Buddhist teaching.

        Thanks for the reply.

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      9. Yes, I think my tablet crashed mid sentence and when I brought it up it wouldn’t co operate. It’s almost 4years old and I’ve pushed the heck out of it and I think it’s tired.

        Yes you are right, all religions get corrupted at some point, often for greed or power, just like most everything. In Nichiren buddhism got corrupted. It nearly went into extinction extinction and a handful of monks barely kept it alive.This is quite interesting. I won’t get into that today. But it was the people, the lay organization – Nichiren shosu that breathed in new life. And raised the money to build a new temples. But the priests were corrupt and in the end excommunicated all the people who wouldn’t recognize the high priest as having special powers. Oops that smacks of another religion that had a pope who is a direct conduit to the almighty. So we left. We don’t worship a man. We want only to understand the teaching and apply it to our life. As we live we understand life more. If there is no proof in your life of what you believe then you should question that. If you are happy with your progress then you should continue. But never stop seeking knowledge or the truth. So often people only practice their faith when they are sick our someone dies and they are asking to be saved in some way, but on an average day they don’t apply the change they need to something they need to do. They would rather have a super being who can do anything do it for them.But whatever you do, that choice is always yours. If you should ever want to talk please write

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      10. I hope both of you see this reply. Years ago I study Nichiren Buddism and was and am very interested in its teachings. So this is like an old friend coming home. I didn’t dwell too deeply at the time as other issues were taking me elsewhere. But I definitely feel the time is right to look into it more deeply for I do remember the peace it brought to me while my world was spinning off it’s top at the time.

        Thank you, both for this uplifting reply to my post. If you take this conversation elsewhere, please let me know… Thanks JC

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      11. My apologies for taking so long to get back with you. My mother was visiting for awhile and she takes a lot of care. She too practices Nichiren Buddhism and it is nice to have that kind of connection with a parent. She has been failing this year after a stroke. She is almost 84. it took chunks of her memory and vocal cords and chanting and doing gongyo has been difficult for her. I would love to continue talking with you. I find it always lifts me up. Shakabuku is like a wonderful drug. When my day gets overwhelming it helps me put things into perspective. I would love to hear about your previous experience. Sometimes things don’t happen at the right time, or the people we are around weren’t taught by people who had a good understanding. If you are taught by the right person, even if something happens and you leave it, you will always come back. Why not write to me at my email. This website is where I write about inmates and prisons. Teaching them how to have hope and how to view imprisonment differently, and look at their lives a different way can make a big difference for them. So, I hope to hear from you – Sonni


  4. Thank you Jeff for this strong and calm post with its evocative title and picture. I must admit to tears of empathy and yet also to joy that this same person every week gives us so much beauty in his posts.
    Yes, you do. I have looked through some back copies and am astounded. You write so beautiful and with deep passion on many subjects so the brain must be very warm☺️ and same for the heart. No freezing there.
    I really have fallen for the song and will download it. I share the liking of Eckhardt Tolle with you.
    Wishing you continued courage and joy in life

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    1. Thank you Mirja, your kind words are always welcomed. The Tolle quote is one of my favorites and so true.

      Your thoughts on my writing humble me. I hope I can continue for years to come… yes the song is one of my favorites and the words always inspire me. I’m glad you like it. JC


  5. Jeff, this is a wonderfully courageous post and I am so moved to read about your daily life with Parkinsons – it’s hard to admit the truth to oneself and even tougher to put that in writing and sharing. However, it is only through your brave step to share that gives me and no doubt so many other an inkling of this insidious disease. I had no idea of all the ramifications and the hidden invisible difficulties you face. Your determination, stamina and positive spirit is a beacon for us all – whatever private battles we face. A truly inspiring post. With warmest wishes. BTW I love the song and just had to look up the story behind it!

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    1. Thank you, Annika, for the lovely words. I think each of us is called by different drums to face up to our mortality and either change for the better or ignore it and fall asunder. I’m a better person for having Parkinson. And it reminds me every day.

      I knew you’d want to go and find the story behind the song. I’m glad I could find a video with the words.

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  6. bowing to your revealing details
    of this personal struggle, my friend.
    may you continue finding the inspiration
    and loving support of others, art & nature
    to accept, transform & blossom
    one gentle breath at a time 🙂

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    1. It would be hard not to with all the kindness and encouragement coming from you and so many others in the blogging community. Special thanks to you and your comforting words… JC

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  7. I’m sure it’s difficult not letting yourself be defined by your illness. Thank you for being so honest in your descriptions – it definitely didn’t come across as complaining.
    Also, got a chuckle out of the term ‘Parkie’. 😊

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    1. Thank you! I know when I first heard the term ‘Parkie’, I wanted to laugh but held it in as I wasn’ sure if it was a derogatory phrase or not. But I was assured that it was fine to use. 🙂

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  8. A brave post, and one that other Parkinson’s sufferers will relate to. I learnt something today, I didn’t realise about the taste issue, that must really suck. Craving sweets, and spicy food. Hope you are having a better day today than usual. Take care.

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  9. It must have taken a great deal of courage to write this post and it has certainly opened my eyes to what having Parkinsons means I was not aware of the physical, mental and emotional journey involved. A brave and humbling post. Take care. Mike

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  10. Thank you for letting have a glimpse of what life is like for you and for our other friends with Parkinson’s. It helps us to understand a bit better. At no point have I heard a whisper of complaint from you and your posts are full of interesting and joyful thoughts.

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    1. From my experience, most people with Parkinson’s don’t like to talk about it. So when I come along and will talk, it’s like the prison doors have opened. A good attitude is everything. Thank you… jc

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    1. And it is light and love that keeps me going along with a whole bunch of exercise, patience, and mindfulness. Life is too good not live it to the fullest whatever issue you might have…

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  11. You have an innate ability to comfort others by your words as I have witnessed through WordPress. I had no idea you suffered greatly, for you write with such light. All my best thoughts and wishes are sent to you. ❤

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    1. Thank you for your kind words. When I was first diagnosed, I witnessed the reactions of two people who were diagnosed about a year before I was. They were angry and miserable. I told myself I would never let Parkinson’s control me like that. I might be limited physically but my mind would never bow down to an affliction. For even in the darkness, there is always a light.


  12. Thank you JC for sharing and for providing us with an insight into your daily life. At the end of the day we are all human(s) and it is in our imperfections that we are united – your post is a great reminder of that. Yet, it is also a reminder that those who complain the least are often the ones who live with much bigger challenges in their lives than the majority (who often tend to complain or exaggerate everything).

    Liked by 1 person

    1. Thank you for your kind words. Yes, we all have imperfections and my inflections seem small compared to what I see others going through. But it does connect us on a deep level. I decided with my diagnosis that I would not be amongst the population that complains about everything. It does save the heart and head.

      Liked by 1 person

  13. JC. Sorry for the late reply. I was visiting with my daughter and my beautiful granddaughter. As you can see, Sonni and I had a pretty extensive conversation here. I’m not sure if you got any notifications. I wanted to keep you up to date.

    Liked by 1 person

  14. I am so impressed that you are writing. Do you use assistive technology? My husband has had Parkinson’s for 8 years now, with a very strong hand tremor, and while he used to write often and well, can no longer manage the computer, even with voice-activated writing, as it’s too hard for o correct any errors.


    1. Hello,

      I’m glad you sent this note as I hopefully will be able to help. I too have trouble writing because of tremor. Forget about writing with a pen, that’s long gone. So I use a laptop along with a lot of patience. I take about three times longer to write something than the average person. I can’t write at night as my hands are tired. So mornings are good and the middle of the day. And I take frequent breaks. Also, I use a mouse with my laptop and alternate between my touchpad and mouse. It keeps my hands from getting tired.

      I’m not sure of your husband’s medications but i take levodopa which helped me in every way except for my tremor. So, in addition, my neurologist put me on pramipexole which controls my tremors enough so that I can press the keyboard and write.

      I hope this helps, it’s not perfect but I love writing and will keep on until I can’t.

      All the best, Jeff


      1. Good point. We should probably re-introduce the mouse, as we only have the touchpad attached to the computer at this point. Dave is also on pramipexole, and will be having Deep Brain Surgery in a few months.
        I applaud you for your writing! It is good and you are very determined, if you are getting all this done at all! It may take you three times longer, but you must be very determined to stick to it!

        Liked by 1 person

  15. Thank you for the kind words, I am determined. I’m currently writing a book on my struggle with Parkinson’s… I’ll send you a copy.

    Please give Dave my good wishes. I’ve heard a lot of good things about DBS.
    All the best… Jeff


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