This is a vent. Sorry for this, but I am frustrated with the disease and the daily stress of living with it.
People don't understand what we're going through and have limited patience with our strange condition. Family and friends who observe us at close quarters start to form their own opinions about the disease and it evolves. For instance, during the early stages when we fluctuate rapidly between on and off states, perfectly well, we can be accused of faking it. During the course of the progression, when we transition between on and off states unpredictably and slowly, we are accused of being needy. When we respond outside of established or known patterns, we are accused of sneaking some extra medication surreptitiously. It is so unfair because we often depend on others to help with the medication during absolutely off times. If none of this sounds familiar to you, then perhaps I am the odd one out.
Now, why do I feel that there is little or no possibility of a cure? Because we are dependent on Carbidopa levodopa which is actually a lot of like an addiction. Any cure depends on the ability to wean off carbidopa levodopa, which is pretty much impossible without solid cooperation from the medical community. Our own observations of episodes of positive effects of an intervention or adjustment is dismissed as a placebo effect.
For instance, I find that a 10 mg of propranolol taken together with carbidopa levodopa prevents the biphasic dyskinesia and dystonia which I suffer from predictably. But, the powers that be, insist on responding only to the onset of dyskinesia instead a preemptively. The only way a cure can be implemented is if there is titration down of the carbidopa levodopa and a titration up of the cure This can only happen under medical supervision and as long as the official direction is towards interventions like dbs or fuse, we can never win with pharmaceutical options.
Currently, I am experimenting with trying to rebuild and re-balance the gut with prebiotics and prebiotics and it is being pooh-poohed at. I am noticing improvement in my symptoms and of course I must be delusional because it is the placebo effect. It is an eternal case of hope, disbelief, being told it's delusional thinking and so on. There's got to be a massive tidal wave of overwhelmingly undeniable evidence before anything meaningful can happen.
Case in point. Diabetes was considered incurable until a few years ago. Now, there is a consensus that remission can be achieved even if it's not a cure. Even life insurance actuarial tables have been adjusted for that. If you have read this far, thank you for your time and comradeship.
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pdpatient
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A cure would be great, but is it really necessary? What if we had a way to stop progression? I would be satisfied if my PD were to get no worse than the day I was diagnosed.
Sadly, this disease gives us few choices. I try to maintain my dignity and keep my head up and put on a brave face, but it all disappears the moment I have one of those terrifying freezing episodes, especially in the bathroom.
This disease tries to take everything away from me after having taken enough and sometimes it is just overwhelming.
Thanks for reading and the support. I feel better after venting. I guess I needed it.
NO!!!!!!!!!!!! you’re not the odd one out. I’d like to share with you some of what upset me greatly at times to try and fit in with society that I felt I was now an outsider in.
Some of these things are totally outrageous, but I’ve had to at this time in my life learn that I don’t have to accept what others now do towards me.
The number of times I have been stared at, had unkind comments made as I have made my way down the street , all made when I have passed close by to those making the comment so I’d hear it. Comments like, ‘Ah the town drunks at it early today’, ‘Another one that doesn’t want to work’ and the sickest of all, ‘The likes of him should be put down’. And that’s just some that don’t have four letter words used in their comments. Yes comments that all have taken their toll on me at different times and cause me to not venture out into the public domain.
I’ve made my way along a city street some years ago heading for the Pharmacy to pick up medications for my wife. A group of four adults stood on the narrow footpath. Shops along this section of street have tables or large bins out displaying some of their wares, thus making the remainder of the footpath narrow.
Two adults faced me and two had their backs to me, one facing me nodded in my direction to the two with their backs to me. They turn and look in my direction as all stopped chatting and just stare. As I got closer no one moved, so I had to navigate the gutter to get to where I was going. Truly a wonderful world we live in isn’t it.
I and my wife recently had to travel some distance to go and see my neurologist, this means getting out of bed at 4:30am and getting to our nearby city by 6:45am to board the train. The station platform wasn’t overly crowded, as I shuffled along behind the wife who requires a wheelie walker for her mobility. The car we are to travel in is way down the platform at the rear of the Train, Car ‘G’.
This is the first time I have ever said anything to anyone or to a group of bystanders, who have all turned facing me and watch silently as I do the Parkinson’s shuffle down the platform. I don’t know why, but I guess the pain of dealing with Parkinson’s and in a rush to not miss the train, egged me to stop and say something to those who were obviously intrigued by what they saw.
I stopped in front of them all, proudly announced that yes I was a Parkinson’s Sufferer, and then asked the question, ‘And what’s your excuses’? I felt quite pleased with myself as I watched many faces of the silent turn various shades of Red. Heading off to catch up to me wife, for once I felt good, even in my stooped shuffling position, I actually felt ten foot tall and bullet proof.
Yes pdpatient, I guess there are many sufferers who feel at times they are the odd one out, be it for a number of reasons. At 72, I have now learned that I’m not the odd one out, it is they who don’t understand that for some unknown reason we have been chosen to have that which we now deal with daily. While many of us have asked, 'Why Me'? some day, heaven forbid, those who view us differently and don't understand us, could find themselves exactly like us, asking that same old question, Why Me? ☺️☺️☺️☺️
I am sometimes overwhelmed by the same feelings as yours and to some extent it is the reality. But one thing is sure that there is no disease on earth for which cure is not possible, The difference is that we the mankind have to search and find it. The research organizations and the governments are not taking parkinson's seriously as they think it a disease of old people. And since the old people have already spent their productive phase of life, it makes no difference if they live with the disease at their current stage of life. I am 100% sure that if George W Bush had not put a ban on stem cell experimental treatment for PD, things would have been different today. Secondly the current method of research is rather counter productive. The monkeys , flies and other animals experiments has greatly mislead the parkinson's research. Similarly the theories like Alpha synuclein has set the direction of all the research on wrong path and the research is thus restricted to a limited avenue.
I am still very much hopeful with the ongoing research in the stem cell field. The only thing which is frustrating me is the timeline of these experiments. Although it is not a cure but it will definitely be a life changer
I am hearing you pd - when I read your post I felt your angst and I can relate because my husband feels the same way at times. I watch him every day and pick up the changes on a daily basis - most causes are the meds and stress. Getting stressed is not good as you know BUT there are many stressors in our day that we can't control unfortunately. You are all different and this idea with some that there is a set criteria for pd sufferers in symptoms need to be educated and not to be critical of a condition they do not have, so you have your vent and I hope you feel a little better for getting it off your chest and released some of the tension. 😉
dear all, I'm only 55 yo and pd symptoms started on 2017 (49 yo) and diagnosed on 2021. I 'm so sad for that. My 2 brothers (57 and 59 yo) have atassia that there is no cure. We are alone and you can imagine how angry we are.
I try to spend every minute of my life doing the things I like. I do Contact Improvisation since many years and it works for the production of dopamine... you can find it on the web: it is everywhere, even if I always need meds.... 😏
Thanks for daring to be real and transparent. I hear ya and also felt lousy when both my GP and Neuro (oh, and Haemo) were dismissive and gaslighting/invalidating. And it says everything about them and the regressive 'system' which holds them captive and of which they are unwitting dupes - more concerned with avoiding litigation than upholding their Hippocratic oath or having a human-to-human exchange. Standing with you in spirit/solidarity!
I am 2 years younger than you, and feel like you do alot of the time. One positive post... one not so positive... a constant yoyo of the mind. Try and hold onto the positives, and keep trying. We all depend on one another for support, wisdom and hope.
Your post really speaks to me. I feel so frustrated with the lack of or slow progress toward a cure. I heard someone on the forum say they would be satisfied if they found something that stopped progression but I am at the tipping point in progression and feel I need some reversal of symptoms to be truly happy. Some days it is hard to keep your chin up and basically lie to people in your life by saying your okay. My best defence against this disease is distraction. For me, when I am golfing, I feel the most normal.
Continue to be steadfast and diligent. I am refusing levodopa/carvidopa and will continue to as long as possible.
Exercise, chiropractic (Atlas), Thai Chi, yoga, pre and probiotics, Macuna, even nicotine patches have all helped me.
One of my biggest frustrations is that certain therapies that can't be patented; B1, Amino Acids, aren't getting the attention nor the funding, they deserve, because the pharmaceutical industry can't make big money.
So we sit and wait. But I'm not passively accepting the levodopa treatment, it reads worse than the ailment.
I hear you and stand with you through this hideous disease.
This following story I wrote to explain to my family and friends what it is like for me every day…
Parkinsons is a neuro degenerative disease with no scientifically known cause or cure…..
Parkinsons is a ‘life’ imprisonment
- arrested by the ‘Fun’ police
- trialled by a biased jury
- and prosecuted by an unfair judge.
Your conviction is Murder.
You claim your innocence and plead not guilty, but it is proven beyond reasonable doubt that you were the creator of, or an accomplice to episodes of severe stress related activities and /or you were guilty of exposure to illicit chemicals and/or mould.
Your sentence is reduced to Manslaughter, as evidence is revealed that it was not premediated, but your sentence will still be 20-30 years in your prison - then in your latter years you will be transferred to solitary confinement when you succumb to Alzheimer’s and/or Dementia.
If you were related to a previous relative with the same conviction (Parkinsons), you will also bear this imprisonment.
Your actions over several years or constant exposure to stress, chemicals and mould (as far as science has discovered), has killed and mutated your Dopamine Brain cells. They cannot be replaced, healed or replenished – they are dead.
This is a life sentence with no Bail, early good behaviour bond or community service…. It Is monitored by home detention and constant supervision and revision.
There is no escape tunnel or early plea bargain.
There is no evidence as to why you have been sentenced nor any explanation as to where, when or how this crime was ever committed.
You cannot see the reason, you cannot find the reason, you cannot control it nor cut it out!
You are bound with chains for some or all of each day with restricted movement.
You must wear the brand of Parkinsons that you cannot disguise nor camouflage in private or public.
You must carry a 10kg weight with you as you attempt to exercise, shop or walk.
You will have restricted activity and diet as you will discover that if you attempt to over indulge you will suffer the consequences of cramping, shaking, shortness of breath, cannot walk or talk.
You are punished if you over dose or under dose on prescribed medication… you will suffer all the same – even if you make your own dopamine with joy, happiness or pleasure it will be all taken away when the next dose is due. (every 4 hours)
Should you be admitted to hospital you will be reprimanded for altering your medications as you have been so frustrated with your challenging symptoms and because your neurologist (who is the only one who is able to change them) will not see you for 6 months, and then treated like a druggy!!
You have access to all of the rabbit holes that previous Parkinsons convicts have made before you and you will continue to research and make your own holes looking for answers - Only to be told by the Highest Court Judge that the only way of seeing if you have any Dopamine is to initiate an Autopsy!
You don’t really want to associate or mingle with other cell mates as it is either an eye opener or a cruel reminder of what you are about to experience in the next inevitable stage or what you used to be able to do.
Either way you will be disappointed, filled with anger, heightened anxiety and frustration as no-one else can take over, tag you out or understand…. you are all treated the same with a ‘one size fits all’ approach, although each of you are quite complex and unique.
Each day will be filled with a challenge – each challenge will become a brick that you will use to build your own unique prison cell. Every Parkinsons convict’s cell will be their own creation, made with either their own reality or perception.
By around the fifth year your prison will become a familiar home. You will find new windows to install but remember they are only a window… never a door. This window will offer hope, a glimpse of sunlight or a refreshing breeze but as the seasons change so will your own experiences.
Like a band aid, each medication is only available to disguise the problem, it is never a cure or a healing.
You will not die in this prison cell called Parkinsons. You will carry your cell with you through out your normal life expectancy. You may succumb to other age-related ailments as well, however, your brain cells will continue to die whatever your diet, exercise, faith or alternative therapies, as science has not yet been able to stop this progression nor protect healthy cells from mutating or dying.
It will take bravery and courage and every ounce of energy to face each challenge, as you are going to be around for a long time!
– so be kind to yourself, nurture your abilities, do not lose yourself in self-pity and loathing and have faith that a cure will be found.
Your family and friends will be your crutch, your sanity and your safe haven - so lean on them, let them help you and don’t forget to ask for help, as you know that you would do it for them.
All in all, this is an unexpected journey, something that was initiated and imposed many years before you even noticed any symptoms – your path may be very bumpy, twisted and gruelling, or even smooth for a short time, then you will be confronted with big decisions – deep brain surgery or stomach pump!.. do you take a leap of faith or plug along in the mud?
Those prison greens will still bear the same label – its all part of Parkinsons.
1. Every disease has a cure. The pharmaceutical industry and politics aren't interested in it. PD patients take their lifelong syntetic medicines anyway. Big revenue.
2. Research and money going into the research is being spend on the wrong premise. Like farooqji said "The monkeys , flies and other animals experiments has greatly mislead the parkinson's research. Similarly the theories like Alpha synuclein has set the direction of all the research on wrong path and the research is thus restricted to a limited avenue."
3. Organisations and networks are funding the wrong researches.
4. People should unite and find a cure. I believe and i'm convinced this is possible.
5. Last but not least, pray to God and ask Him to enable mankind to find a cure or a treatment to stop the progression. Ask Him for help. Pray with all your heart. Don't let anyone distract you from God. I know there are people who mock God and religion but that's their loss.
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug, is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
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