My tremor was misdiagnosed as essential tremor in ’09 and was correctly diagnosed 7/17/2011, so I consider this July to be my 15th anniversary and therefore feel entitled to blow off some steam.
A couple things that irk me. One, people who have been diagnosed within the past 6 or 7 years, often less, who are in a honeymoon period, who think they have figured out a magic formula for controlling progression for the rest of us. My message to them. Have a little humility. First, know that you don’t know if your formula will last over time. You don’t see any credible old timers (except John Pepper & John Coleman) saying they have a formula. Second, recognize that the vast majority of pwp are not able to perform like you do. Third, B1 is the only supplement that has a large following who have experienced some relief. I’ve tried them all and while they may be keeping me healthier than I would otherwise be, not one has reduced a symptom.
I, for one, hereby declare I am not buying any Inulin and a Probiotic, Urolithin A, and Spermidine. I’ll wait for to see if there becomes a large following on the forum, first.
Over the past few months I have posted comments saying I no longer pay attention to studies that are in vivo, in vitro, about mice, fruit flies, or any animal or to any articles for that matter. Mind you, I have read hundreds of articles if they offered even a glimmer of hope. Now, I find myself squishing whatever hope might spring from such articles. I consider the headlines to be false hope, and quite frankly, don’t care to be jerked around anymore.
I have come to the realization that at this point in my journey and at 78 y.o. and considering how long it takes for a new drug to get FDA approval, I am on my own. I will die before there is a drug that will slow the progression or much less cure the illness. It’s time I face this as a fact of my life.
If you are in your 60s and/or keeping healthy, you still have reason to hope.
The very end game of PD is gruesome, (but so is the end game of everyone’s life. Small consolation.) I don’t intend to go thru stage 5. I am hoping I maintain the presence of mind to know when to pull the plug.
So, where does this leave me. In short, where I have always been – striving for acceptance of my situation, and the never ending experimenting and tweaking of my diet, exercise, and life style choices, adding my 2 cents worth on this forum, but spending far less $ on supplements.
Maybe I got out on the wrong side of the bed this morning and will snap out of it. Who knows?
Written by
MBAnderson
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🤣👍🏻👍🏻Hear-Hear! Great post. I agree with everything you said. I’m 71 and have the same thoughts. Just curious, have you given any thought on how to pull the plug? My biggest concern is that life will hit me with something out of my control before that and render me helpless to do my thing.
The very end game of PD is gruesome, (but so is the end game of everyone’s life. Small consolation.) I don’t intend to go thru stage 5. I am hoping I maintain the presence of mind to know when to pull the plug.
MBA - I too hope to maintain the presence of mind to know the right time to pull the plug.
Can you share your thoughts on how to know when and how?
My wife isn't strong enough to lift me out of a chair, much less off the floor, off the toilet, out of bed, in and out of the shower and having gotten an intimate understanding of what life is like in a nursing home, I have decided I don't want to finish out my days in one, so that is where I will draw a clear red line.
Thank you Marc, on the spot as always. Recently I had to go to hospital as the result of a fall. I saw the Trailer - with the best will in the world (thankyou NHS) I want to be in charge of the Story!
What do I need for the end? (And may it be a long time coming)
Hello Marc, I think you need to borrow my name for a day or two bcos it seems to me that you sound like it 😅
But seriously, you're doing very well 15 years in. You, along with Art, Park_bear, bolt have contributed immensely positively to this forum and you deserve a lot of kudos. Thank you Marc.
Having said that, you're also totally right in your post. Yours is a very realistic view of our situation. The end game going to be gruesome, is brutally honest, but its also very scary. And we need to face it and decide wether we want to go through with it or not. I, for one have decided to reinforce my plans to go through with the assisted dying route (controversial I know). Because there's absolutely no point going through impossible pains just to satisfy those who want to paint a smile on the pains to pretend they don't exist.
With that being said, realism shouldn't completely kill optimism (I know you didn't say it should, but I just think this point also needs eed to be emphasised)
I totally agree with you. I was diagnosed in 2013 at age 49, and I was one of those people that thought I had all the answers but know now how wrong I was. The progression is frightening. Take care. Karen
Great message! I value your insight, experience, and friendship and feel very fortunate to have met with you in person at least once a year since my diagnosis six years ago. I share your views about research in mice, fruit flies, and other animals, but I don't believe all of us with PD are destined to suffer horrible deaths. Some of us will die quickly and relatively painlessly from other ailments. As for studies or procedures performed on actual humans, I have big hopes for stem cell therapy, but for now the PTT Focused Ultrasound undergone by you, Lena, and others has been my biggest source of hope and inspiration. You may not be fully able to recognize how you have improved, but I have been amazed by how much better you appear now compared to when we first met in 2018. You are a living, breathing inspiration and one of the least grouchy guys I have ever met.
Completely agree with Jim - and would like to add that, from a standing start when my husband was diagnosed (7 yrs ago at 63) and with no information from the medics, yours and others' contributors on this site have helped me/us enormously. so thank you!
at the age of 78 and 15 years in I would say that you have gone some way to find a system that has helped reduce symptoms for you if you are still able to write posts like this. The majority of people at 78 are struggling with something or another, many are dead.
Maybe you just can’t see it. Perhaps the difference is whether people are glass half full or empty.
I really can’t see a day when people will take a pill and be cured. You can’t cure age.
IMHO It's time to consider that we are all spiritual beings that go beyond the single life of a body.
There is a whole parallel universe made of products of spirituality to operate with, such as friendship, love, help, beauty, creativity, just to give some examples.
Where do these things , that everyone experiences and therefore are real, come from?
Certainly not from a chemical laboratory, but they are products of the spirit, a somewhat neglected part in human beings lately.
That being said, it's always a great pleasure to read your posts, and I agree with everything the colleagues have already written above. MBA.⭐️.
Nothing beats a good well worded rant and this is one of your better ones. What you said is true and and of course not exactly correct in this age of euphemisms and woke politically correct BS. I know that there are many types of PD and many types of people and that the permutations and combinations of this interaction is a very large set of different circumstance that is impossible to affect everyone with one cure . I am amazed that there are so many of us that simply can not tolerate so many medications and get no relief from any of the miracle substances or activities.
I also used to get a bit weary of the new people with newly diagnosed Parkinson's that come on to tell us that they will not be taking any of that man-made medication and instead will concur PD with a bit of exercise and some natural organic spice or animal droppings as if they had any idea what this disease is all about. They treat it as if the name Parkinson's Inconvenience would be more suitable and that their Neurologists prescription to take CD/LD was wrong because they believe he is either out of touch or in the pay of Big Pharma or some other conspiracy that supports their unfounded paranoia (that is proven incorrect ) that using CD/LD some how leads to a negative outcome and should be avoided. Now I can no longer take the stress of reacting to it all and I leave it to time to show them the reality of the small word "chronic ".
I have also watched the medical profession change their understanding of the disease and the public's and governments understanding. The battle there is not over however. It should be allowed for sake of funding research that death certificates be allowed to list PD as a cause of death and for the sake of medical financial support that pain be listed as a common symptom of PD.
Finally , everyone dies, it is part of life and mortality . You do not have to go softly into that dark night but eventually you do have to go. I do not fear the last phase , it is very short and not worth dwelling on . Read what Gioc has written above, again . He truly understands that while no one can show scientific evidence, belief and religions can be personally confirmed and do satisfy and answer many questions. May God help us all understand.
Be Happy,
happiness is a frame of mind and you can be happy if you have a mind to.
Uh oh…… did I start something!? 🙄🧐 I’m rewriting history. Im not playing anyone’s game at life regardless of this disease. I will love my body and continue to take as best care as I can with however much time I have. I choose to focus on celebrating what I have before me instead of stressing about things I dont know.
Positive and upbeat - we know and love. We all have the other sort of day sometimes.
I share your conclusion that messing with supplements mostly helps the wealth of the alternative health industry and is not doing anything to fix PD. And , having watched my Dad, I am aware PD progresses. My Dad and others who choked to death alone behind plastic sheets from Covid before stage 5 arrived, didn't have it easy. Remember - Life is a sexually transmitted terminal illness, so death is inevitable. Too many don't get to age 78 before it arrives (I'm thinking particularly of 2 French prison officers, their children, including one who has another 5 months to wait to be born)
PD has not been a barrel of laughs for me, but at 7 years post diagnosis , I have been lucky so far, and manage better than my wife and I feared on diagnosis.
It is reported that Gary Player, one of the all-time greats of world golf, was challenged during a practice round by a spectator about playing a “lucky” shot out of a bunker and close to the pin. He replied that “The more I work and practice the luckier I seem to get!”.
There is no doubt that my experience of PD will be better than yours because I was born 15 years later. So in 10 years time, when I am 73 and you will be 88, I can get a stem cell transplant like this guy euronews.com/health/2024/05...
Or I can use a sub-Q levadopa delivery system, or the emerging spinal stimulation for freezing
Or one of dozens of promising remedies that make PD less hard for those born, and so diagnosed with PD later rather than earlier (including hopefully, custom engineered molecules in development like ikt148009)
As an 13 year old boy, in the school holidays , I joined my Dad when he presented to groups of neurologists about Sinemet,at it's launch, and got to watch films of late stage PD patients experiencing the benefits for the first time.
Yes - I'd like more. yes 50 years is frustrating. But PD for you and I is less-bad than it was for the generations before those in the films
And so, because I dont believe effective therapies will just emerge, finished and ready to use, but need pre-clinical evaluations including fruit flies and mice, and because I want my children and their childrens experience of PD to be less bad than mine
as well as because I am young enough to benefit from any developments which become clinically available in 10 years time or less
I remain interested in and grateful for research into this disease.
Try a pair of Tass gloves (like the ones i am wearing as I type this).
To you we pass the torch, it has not burned continuously . I dropped it half a dozen times and had to relight it twice and lost the matches as did the others also . Good luck , carry it high but watch your footing.
No, you didn't wake up on the wrong side of bed. Just tired of reading about the latest trials and science or lack of science and new inventions. I hear you.
We (it's a team effort - me the Caregiver and my husband with PD) stopped B1 regiment after being on this supplement for a few years. Seemed to stop working. Supplements now taken are minimal.
News on slowing the progression of PD stopped looking hopeful to us. Seems a waste of time to read or even listen to it. Things continue to look promising with developments and research in the field yet we no longer are eager to read each article and hope something is found that will Cure or at least stop the progression of PD for all. Our hope hasn't dwindled, we simply cannot read about this daily and hope that tomorrow will be the day a Cure has been found.
Instead, our focus is the Journey with Parkinson's, creating a pathway that fits our needs, by setting daily, weekly, quarterly goals, by adding joy and laughter, setting up routines. If one hobby or exercise has gone down the tubes because of inabilities, then we find another hobby or exercise that we can do. Making our own road map. Taking the RX for PD, exercising our bodies and our minds. Retraining our brains then relaxing the brain and body with meditation, breathing exercises to refresh and refocus.
Our pathway, the roadmap often changes and we take an alternative path. If Plan A doesn't work then onto Plan B. We do have plans and back up plans. This is what keeps us going. We continue to move forward. And, yes with HOPE that perhaps during our journey, a cure is found to end PD and stop it in its tracks.
Marc, my husband is 85 1/2yo and I am 72yo. We continue to do the best we can daily. We've secured a scooter, rollator, motorized wheelchair, transport wheelchair, canes, chair glide for hubby to get down basement, a car lift to carry the scooter, and are awaiting to get an outside chair glide so hubby can get up the stairs without my body being pressed on the back of his body to get him up the stairs! It's a sight to see.
I’m am 64 years old and was diagnosed in 2017. Your rant is mine. I have not given up, but getting discouraged at times. False hope is draining too. Trying to currently to live in the moment with all of my senses. I appreciate all of your research and analysis in helping everyone better understand PD.
Well said all , well written, well lived LIVE Feedback from the coalface of staring PD in the face. I had a terminal face slap in 2017 when my RCA closed over, occluded, 100% blocked...no surgery needed because my hearts collateral system had fired up and has kept me upright since. Because of the unique diagnosis I would dive down the Google rabbit hole x 2 per year to see what thread was popular in the cardiac world.
2022 the tremors started, formal diagnosis March/April 2024.
So I have now 2 lines of enquiry to stay up to date on so I do not peg out tomorrow. Marc you are spot on with the "vested interest, wheelbarrow pushing, drum beating snake oil floggers" They are in the Cardiac solar system as they are in the PD solar system. IMO the sharing on this page is the best because of the balance between lived experience, short fuses, deep hard won wisdom and a sharing, articulate, accepting environment. Marc you epitomise all that is valuable to us newbies...maintain the rage buddy,
Well said, MBAnderson . You are the elder statesman of this forum. Everything you said is true. May you live to 100 as Dr. Laura says we should all strive for.
I had 5-6 years where my only problems where right hand tremors and sometimes a weak voice. Unfortunately Pramipexole was a disaster. Madopar completely useless. B1 made my tremors worse. Nothing worked. The closest to amelioration of my symptoms was using mucuna powder. Unfortunately it only lasted for a couple of weeks. Nausea and messy way of taking mucuna powder where other disadvantages.
MyNHS consultant is utterly hopeless. I prefer seeing the nurses.
Also my PD started with a bang. My right hand going into a severe spasm. Some weeks later the tremors started.i
After 9 months I saw a Parkinson nutritionist. I did blood tests and was found to have very low level of certain vitamins . So I disagree with you and i believe they might be helping a bit. But you might be right and they may be a waste of money. Other results were very high levels of aluminium. For nine years I have been drinking Volvic water and my aluminium levels have shot dowm
I am seeing a private neurologist in London. He put me on rasagiline. It did not seem to alter things so I stopped it. I saw him a month ago and did an MRI of my brain . Have not heard anything from him yet though the radiologist said there were Parkinson changes. He put me on ROTIGOTINE neuro patches. The first month was fantastic . It had no effect on my tremors but my fatigue disappeared. I was actually jogging on the treadmill. Unfortunately we are back normal
The doctor has now increased from 2 mg to 4 mg. The first time I payed privately but the N HS is paying now A course for 6 weeks was over £200!
Today I went for my usual walk. I had a bad bout of “ festination”!” and fell 5 times. Bloodied and bruised. I just could not control myself. A very kind couple in a car stopped and the man helped to get home. There is some goodness in this world.
The London neurologist told me nobody would touch me to do DBS as nothing works. I am a bit suspicious about this statement . Anyway the mucuna and rotigotine worked for a while.
I used to be a joker but am very quiet and I know I don’t have much to go . I am 71.
I still play scrabble. Luckily a couple of players come to my house . But I am finding it difficult to concentrate because of my tremors.
I play online scrabble. I can just about text. If the tremors get worse I will have to give up and that would be a very sad day.
Sorry for the length but it feels good to express myself with fellow members and maybe some have gone through what I have experienced and give me advice.
I totally hear you. I am at the 10 year point and there has been no miracles in that time. Just like you said just me tweaking my diet and my expectations.
I'm with your Marc! I was one of those young "I'm going to cure myself" people. I tried everything. I have to hold my tongue when people hear I have PD and are like have you tried "fill in the blank". I am young enough(51) I am hopefully that I will be able to get stem cell transplant (not injection but transplant where they actually inject them into your brain). As you know I am extremely greatful for PTT - so far it has gotten my 5 + years I would not have had. But I've learned I am lucky with my outcome and yes I still have PD and I am pretty convinced that a magic drug isn't going to come along in my life either. Just over 5 years ago I got to see what bad PD is and believe me being housebound and in constant discomfort and pain was no way to live. At the same time, I don't want to take away hope from those who are newly diagnosed.
I owe you a huge thank you for inspirIng me to get PTT, 4 years ago. You are a brave pioneer.
THANK YOU.
I do believe you are wrong about there not being a drug in your life time.
At 51 y.o., you will surely be eligible for stem cells or whatever and I am quite sure there will be something in 10 years that will save you, along with many others.
If I even make to 88 (which is highly doubtful) no doctor is going to do a stem cell procedure, or DBS, or whatever on an 88 y.o. when they will have plenty of 60 somehtings, such as yourself and the newly diagnosed to choose from - hince my rant.
There is one advantage I have over those brats, the newly diagnosed, being my age. I was in my 20s during the 1960s & 70s and that makes up for it. The good ole days!
You are most welcome! And I hope you are right - I hope we cure this out side of in mice LOL! I at least got to live in a no screen world for my first 30 some years!
Marc said : "There is one advantage I have over those brats, the newly diagnosed, being my age. I was in my 20s during the 1960s & 70s and that makes up for it. The good ole days! "
You are absolutely correct . I have never thought about my life like that . I was alive in the 40's and 50' s when my parents were still young and fun. I would not trade one year of those times for 5 future years. Good times
Failed your strive to be an old curmudgeon. What's annoying you does not preclude you from arriving at a positive stance and conclusion. You've aged and matured well, accepted your mortality, and prepared.
71, dx 2018, Looking back I’d say symptoms started in 2005. I enjoy this site and all I can say from my experiences with the monster 👿 is /*#@%-“,!#$$&’£<~§{^…?🥴
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Ginkgo Biloba And Drug Induced Parkinsonism
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Has anyone tried John Gray's approach to PD?
