Maybe this is something that you are not ready to read.
Death is something that is difficult to deal with and even discuss, especially in North American polite society. I do not know why European society is more able to discuss it and accept it as inevitable.
I have over the years talked about "denial" , the importance of HOPE , Planning and preparing the way forward to make it easier and take advantage of the opportunities to do so . The new young Parkys who have been recently diagnosed write in with always the same statements being that they intend to conquer the PD with their exercise routine and some natural substance but not the prescribed man made medication and they are supported by others who declare that they are winning the battle with PD .
I have now completely stopped trying to help them see reality and saved my energy and concern for other things . They are convinced so why try to help someone who does not want it , but you know that someday they will wish that they had taken the medication and used the opportunity to do many things that would have made their lives much easyer and I have watched others besides me do the same. I am rambling ,sorry.
I am not a medical expert nor a sociologist nor am I super educated and I do not qualify for Mensa ( although my niece qualified as a very high rated genius and was sought after in high school as prized future employe by the military before her diagnoses of schizophrenia . I still miss her ) I am just a 76 year old man who was diagnosed with PD over 20 years ago and has experienced a life with PD . I have made mistakes, I have regrets, but most are that I underestimated the increasing speed and severity of deterioration with still so many things left undone. It is a nasty end game and you can not play it alone .
Pain is the big factor and you will say but they say there is no pain from PD. Exercise more you say but I can not take three steps with out holding on to furniture or handholds . My advice to myself was good but not acted on enough and I was blindsided by an insidious decease that caught me off guard and still not ready. But who among us is ready ? very few . There is more to Parkinsons then we understand. Keep an open mind and a healthy attitude and a healthy body and be happy but understand you will not beat it, but you may make it easyer . .
I am done here , I tried but I failed to pass the message, enjoy yourself when you can , there is so little time , it is a wonderful life , God bless you all.
Thank you
GymBag
Written by
Gymsack
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Gymsack, it may seem like a farewell, but hopefully you realize that you are also very important to the new “young” Parkys. We don't always agree, but your message, like this one, does resonate. What an inspiring contribution! We really can't do without that at HU! 🙏
Great post Gymsack. Profound and wise. Thank you so much for sharing.
You are very correct. The roads are littered with people that evangelized their successful strategies to beat PD, and when you check back years later it turns out that they eventually succumbed.
On the other hand, there are a few, a very very few, documented isolated cases that offer hope. There is also the fact that never in history have so many people had so much access to so much scientific information, AND had so much access to substances and supplements AND the ability to share and coordinate with others.
I still think there is a chance to stop progression. I would not go to extremes and ruin my quality of life on an unproven and very very unlikely protocol to stop progression, but it seems reasonable to take a flier on maybe a dozen potential solutions as long as they are not too expensive or burdensome.
Personally, I am a big fan of denial. When somebody tells me they think they might have an incurable degenerative neurological disease and ask how they could confirm it, I have to ask why they would want to find out? Those 5 years where you are worried but not quite sure what is wrong with you might be your last best 5 years.
I like the Jackson Browne line from "The Only Child": Let your illusions last until they shatter.
I deduce that the lack of perseverance in the direction of the goal leads to failure. For example in finding a cure for Parkinson's disease.
I'm very sorry for your loss,
in my opinion the difference between Europe and America is that we Europeans consider , for education, man a mostly immortal spiritual being capable of loving and helping his fellow men and death is the transition to a new life, whatever it may be .
That which we always carry with us is our judgment of ourselves, which is always the harshest and sometimes unbearable.
In your life, have you made the right decisions?
If you still ask yourself this question, you are in good spiritual condition, but do not be so severe in judgment.
Life presents us with problems that are difficult to solve, and sometimes we regret what we do in an attempt to resolve them.
However, remember that man is fundamentally good, spiritual, and immortal.
Along the way, don't lose sight of the summit, or the goal in life.
Thank you so much Gio. Your comment here is one of the best things I have ever read. I lived most of my life carelessly and recklessly and I know about regret. Your words are a soothing balm and I will keep them with me:
"The difference between Europe and America is that we Europeans consider , for education, man a mostly immortal spiritual being capable of loving and helping his fellow men and death is the transition to a new life, whatever it may be .
That which we always carry with us is our judgment of ourselves, which is always the harshest and sometimes unbearable.
In your life, have you made the right decisions?
If you still ask yourself this question, you are in good spiritual condition, but do not be so severe in judgment.
Life presents us with problems that are difficult to solve, and sometimes we regret what we do in an attempt to resolve them.
However, remember that man is fundamentally good, spiritual, and immortal.
Well, then it's time to resume the journey towards the Top of the mountain.
You can still decide to make your life beautiful and interesting.
Just like an artist creates their artwork, each one of us can deal with our own life as if it were a great canvas.
It takes skill, work, and responsibility to make a life truly beautiful and interesting like a artwork but it's worth it, Parkinson's disease or not.
”…and then we emerged to see the stars again.” (Hell XXXIV, 139), “ è l'ultimo verso dell'Inferno della Divina Commedia di Dante Alighieri. Dopo aver faticosamente attraversato la natural burella che collega l'Inferno alla spiaggia dell'Antipurgatorio, Dante e Virgilio alla fine contemplano lo stellato cielo notturno dell'altro emisfero: è un presagio del nuovo cammino di luce e di speranza dopo le tenebre precedenti, “
is the last verse of Hell from Dante Alighieri's Divine Comedy. After having laboriously crossed the natural burella that connects Hell to the Antipurgatory beach, Dante and Virgil finally contemplate the starry night sky of the other hemisphere: it is a harbinger of the new path of light and hope after the previous darkness,
You are wise, Gym. I hope you will continue to share that wisdom with us. There's no suitable substitute for experience and you have far more than almost all of us.
I am what I have always been, I can not change, I have tried. I am the guy who painted every room in this old house to my wife's chosen color and tore apart the bathroom to the studs and built a new one including walk in shower. I laid the concrete sidewalk around our new small swimming pool and dozens of other projects , I did it myself, researched it and purchased the tools necessary and did it, not so much to save money (and I did) but to expieriance it and accomplish something. I do not tell you this to brag but to share the knowledge of the personality . A psychiatrist could perhaps tell me why , what drove me, but a lot of it was just plain fun, but it is habit forming.
My health was perfect, my condition was that of an athlete. Maybe sore muscles from carrying bundles of shingles up to the roof of my friends house. (my friends were also afflicted with this do it your self mania)
The worst thing about PD is not any symptum listed in the books there fore there is no guide line how to address it . It is the total loss of capability to do anything other than call in a tradesman. I can not justify my existance , I am a burden and allowance is made for my inability to talk in a way that sounds like anything but an old man. Generally people ignore what I say now anyway, I am not senile it just takes me too long to say it so I do not bother much. My wife ties my boot laces. I am reminded of a co worker who asked me what she could do to to make her elderly father understand that the advise his 3 daughters were giving him to move off the farm was good advice. I asked her if he had run the farm by him self selected the crops, decided on which cattle to breed and planted , harvested and sold produce and did all the maintenance on the tractors and equipment and buildings and pulled out and cared for newborn calves himself with little help or guidance and at the same time raised three girls all with university degrees.
She said yes , she had not thought about that and she would talk with her sisters. I hold that old man with the highest respect possible but some how he was as foolish as me.
How does one plan for that
I do not want nor appreciate sympathy ,that's not the point. It is to help understand but all that I can do is to put it in front of you and hope you have more control and can adjust better than me and perhaps others already have but are quiet.
I don't know you, but I have read lots of your posts. And I think one thing's very clear. That despite the fact your wife now ties your laces and you need to hire tradesmen, you are still essentially you - a very tired but still actively courageous man - in extremis, but still communicating, still serving others. I'm sorry things are so awful. You don't deserve this.
Things are not awful all the time there will always be good and bad days . It is just that what makes them good or bad keeps changing . Hard to explain
Voor je vrouw moet het in ieder geval fijn zijn dat je er ondanks de fysieke beperkingen toch bent en je uitstekend kunt uiten.Mijn man heeft nog maar weinig woorden.
Ik lees je verhaal en denk dat het voor heel veel mensen zeer herkenbaar is. De constante strijd met de ziekte, bang om helemaal afhankelijk te worden, voor mij ook de constante strijd met God de Vader. Jacob (Israël) worstelde ook met God, hij hield vol en overwon, zoals een vader zijn kleine jongen laat winnen in een worstelgevecht, ja, dat dan wel, wat een heerlijk Vader, Met deze Vader, die zelfs Zijn Eigen eniggeboren Zoon, niet spaarde, maar Hem overgaf om elke ziekte en elke zonde te overwinnen door te sterven aan een kruis, gewoon omdat Hij ons zo ongekend lief heeft; Met deze God zijn wij meer dan overwinnaars! Door Jezus Christus onze Heer! Om van Hem afhankelijk te Zijn is niet erg, het is fantastisch! De toekomst is zeker als we Hem belijden en van harte lief hebben! Daarom vind ik je laatste zin de mooiste; God zegene jou ook en je familie!
God zegene allen die zijn getroffen door deze vreselijke ziekte of welke ziekte dan ook! Houd vast aan de enige en zekere Hoop, Zijn naam is Jezus!
Laten we elkaar massaal opdragen aan de Heere, Hem prijzen en danken! Wij mogen grote dingen van Hem verwachten!
Dat Zijn Koninkrijk spoedig mag komen. Maranatha, Jezus, kom haastig!
Thank you for replying. You are correct. Once again I have forgotten to rely and depend on a stronger force to help me through a time of weakness. I repeatedly try and do this alone and find that we are very weak little beings. I feel better now , not lost, not confused just a little sad at the number of people who have to go through this. I am a protestant but marvel at the strength of the late Pope John Paul who had PD and said that he thought the PD was just another test , one of many that God had put him through. If it is a test I am failing miserably.
Bedankt voor het antwoorden. Je hebt gelijk. Opnieuw ben ik vergeten te vertrouwen en afhankelijk te zijn van een sterkere kracht om mij door een tijd van zwakte heen te helpen. Ik probeer dit herhaaldelijk alleen te doen en merk dat we hele zwakke wezens zijn. Ik voel me nu beter, niet verloren, niet in de war, alleen een beetje verdrietig over het aantal mensen dat dit moet meemaken. Ik ben een protestant, maar ik verbaas me over de kracht van wijlen paus Johannes Paulus, die PD had en zei dat hij dacht dat de PD gewoon weer een test was, een van de vele die God hem had laten doorstaan. Als het een test is, faal ik jammerlijk.
u bent een wijs man, de Bijbel zegt; ‘ontzag voor God is het begin der wijsheid’. Het punt is, dat we allemaal falen voor welke test of beproeving dan ook, wanneer we het allemaal zelf willen doen. De Heer weet hoe zwak wij zijn, u weet het zelf ook en ik ook, daarom; Zijn Zoon, doet het werk voor ons door de Heilige Geest als we al onze zorgen aan Hem geven. Ga tot Hem, Hij zal u nooit teleurstellen! Zijn belofte is: wie zoekt, die zal Hem vinden! De toekomst met Hem zal geweldig zijn. Nieuwe aarde, nieuwe hemel, perfect lichaam, volmaakte ziel, geen ziekte, oorlog, jaloezie, maar rust en vrede. We zullen onze Schepper ontmoeten, God zal dan alles zijn in allen! Ik verlang sterk naar deze nieuwe wereld, eindelijk zal Gods plan werkelijkheid worden, eindelijk gerechtigheid, geen Satan meer die ons het leven zuur maakt! Volmaakte harmonie! Voor wie? Voor iedereen die Hem van harte lief heeft en wil leven zoals Hij het wil, al is dat nog niet volmaakt.
I really appreciate and understand your message. I totally believe in grabbing hold and living life in the present. Neuro degenerative speaks for itself and so although I believe in maybe what’s called a functional approach or an all around concept with exercise, diet, vitamins, meditation and etc., I also believe in conventional medicine if you can find a balance and titrate the medications for your unique self/body. I am truly living fully today and adapting as my body changes with the disease. I believe in laughter, music, literature, love and connection and I think most of these things can’t be taken away by this disease. Thanks for your thoughts.
If however you go to the other end of the spectrum and have an open mind and look at the progress in science currently on the brink of "Reversing the Age" of humans at the cellular level, then there is a glimmer of hope.
Some may scoff at this, however the science has advanced at a rapid pace since the discovery of the key factors that can reverse a cells age. The Noble prize winners in 2012 were Sir John B. Gurdon and Shinya Yamanaka for the discovery that mature cells can be reprogrammed to become pluripotent.
Since then the field of age reversal at a cellular level has exploded and now what is commonly referred to as the Yamanaka Factors has been tested and with some changes which can reverse the biological aging in animal studies over and over again with no side effects.
Without going into the dynamics of the science behind this area of studies, it has now heading towards the first Human Clinical Trials in the next 3 to 5 years.
Again many here on this forum may be skeptical, and this is understandable, however, as scientists have explained, if this is proved successful as it has in animal studies then it would reverse the majority of age related diseases.
There comes a stage , a time in the journey with Parkinson's that you are no longer making any of your own Dopamine. I appreciate your sharing of optimism and hope, but true to form I note that the first human trials are 3 to 5 years away. That would strongly indicate that it will be 15 to 20 years with luck before we see any benefit. That would make me 97 years old. and that is a lot of biological aging to reverse and any suggestion that we will re-grow any thing is not supported in the animal world in general . Very few animals can regenerate a tail .
I doubt that I can regrow my dopamine generating system. I hope you prove me wrong.
Thanks for the comments . I hope this research benefits you.
The world does not revolve around me . I am not at the centre of the universe however I can see it from here. To stand and fight the PD as best I can means that there are good days when I can do something and force my self to appear ok and days that I can not endure . I don't have to be on top of every day but I do have to make sure I am not making a problem for my wife / care giver. I actually promised her a rose garden when I tricked her into marrying me , the smartest thing I ever did and the luckiest day of my life. If she was not here , I could not continue nor would I try.
Married for over 50 years ( not sure of exact number ) high school sweet heart , we started with nothing. Many years later with a son and daughter and two sets of grandchildren in their own homes ,she is happy living in the house we bought so very long ago. When people come to visit or dinner she knows that some days I may have to leave the conversation and go lay on top of my bed for 20 minutes . My friends and family know that my departure does not signal that it is time for them to leave and that I will be back after a short nap. I have become more of an observer and much less the leader of conversation and laughter and have learned to be quiet .
My grandfather would say to me " Make people think that you are very intelligent and well educated , Don't say anything". It works . Interestingly it turns out the rest of the family can lead a rollicking conversation, cook a great steak and get their own drinks. The point in time that you realize this , is a huge tuning point. Also when you realize that you have done much for others and they can now help you a bit when you or your spouse need it. The children are over 40 and we trained them at a time when we were looking after them and our parents also.
You can tell that I feel better today. I have never received a post / letter from GIOC that did not make me feel better and take smaller bites and continue onward.
Jones 2023 made me realize what I have forgotten many times before , I forgot again.
I can be my own worst enemy sometimes
maybe I am not processing information quite as quickly as I used to . It does seem like I am humming old radio commercials and thinking of the songs a lot .
Where ever you go , trust Texaco.
Mr Clean gets rid of dirt and grime and grease in just a minute
Mr Clean will clean your whole house and every thing thats in it
The above lead is to an article on Medically Assisted Suicide as the Roman Catholic Church views it. It of course runs parallel to their views on abortion .
I agree that the tests to qualify may be too loose and that better control may be necessary because the numbers continue to expand rapidly and other actions may or could replace some of the needs but it does not work the old way either.
This should be discussed here . People here should have an interest in what their governments are doing and what is going to be available to them. I am not suggesting support or leaning to one side which may surprise some but I just dont think that the Assisted part is necessary for all people and maybe just the facility would work.
It is interesting to watch the breaking down of the priorities of human needs to that which is most necessary , humans must breath air every 3 minutes , must drink water every 3 days and must eat every 3 weeks . but in our case add must have dopamine every couple of hours, must have serenity every couple of days and a surge of faith that maintains them every once in a while. Yet many people choke to death eating food too fast and not prioritizing breathing.
I know that I am increasingly distancing myself away from the others in this world . It is just much easier to stay home unshaven and wear an old shirt and less uncomfortable for those I come in contact with to see where they may be headed . One life long friend will not take no for an answer and comes to see me and then drags me out to a coffee shop. He is probably saving my will to continue from completely dripping away.
I used to be able to wait quietly for a few minutes and make a little dopamine an then continue on for a short time. I used my wheeled walker to walk to the local do-nut shop a couple blocks for a coffee with my wife . I have done it many times but this time I forgot to take my medication with me . I realized I was missing a dose but we started walking home . Short distances followed by sitting on the walker did not work and finally I could not move .
My wife hurried on ahead to get me transportation and some meds. and I sat on my walker waiting and breathing . Priorities are difficult to manage when the rules keep changing , for example : I must not order spaghetti when I am in a restaurant or when having guests at home . ( what a mess .) Things that you never thought were important change places on the priority list with things that I worked all my life to maintain and now really do not matter at all. its a funny process. keep smiling . It could be worse and probably will be. Be happy.
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Too young for Parkinson's Disease
How much simemet are you taking once you have been diagonsed 5-6years and the honeymoon period is over 
Anticholingeric Meds via PD lead to risk of dementia
Shift in focus.....
