I’m new to the group. My wife was diagnosed 10 years ago at which time her neurologist stated that there would be a cure within 5 years. 10 years on cures are no longer even mentioned and PD is almost treated as a forgotten disease neither attracting attention or the funding that cancer for instance enjoys. Does anyone know of any research that is being undertaken that looks remotely promising
Research : I’m new to the group. My wife... - Cure Parkinson's
Research
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thfc1961
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This paper just came out today on bilateral PTT (I had this surgery on both sides a year and a half apart) I am doing great! frontiersin.org/articles/10...
I recommend that you look at: scienceofparkinsons.com Go to the post from Jan. 25th. It is a mile long and discusses the disease modifying (not symptom masking but actual disease modifying) research that is being done. Your neurologist was irresponsible in making such an assertion. Cures are no longer mentioned because the complexity of PD is better understood now. I believe there is not going to be a one fix all cure. But, many disease modifying therapies are being researched.
thfc1961• in reply to
He actually joked that “there was never a better time to get rage disease”. This was the first time we has met him and he seemed a r3ally nice guy but looking back I am angry because he gave us false hope.
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 2023. Testing — mice, open label, double blind — has been going on for 10 years and it has been positive every time.
scienceofparkinsons.com/201...
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 Bydureon.
There will never be a CURE for Pd, in my opinion. More money is made treating Pd for many years, whereas the cost of finding a cure, which is only sol once to each patient is far less lucrative.I have been able to reverse my symptoms, having had Pd symptoms since 1963 and being diagnosed in 1992. It is far too much information to out on this website. If you email me at johnpepper@telkomsa.net I will send you my videos and a whole lot of information about how I managed to come off my Pd medication in 2002 and have been Pd-medication-free since then.
• in reply toJohnPepper
That is your experience. And your experience is truly amazing and inspirational and it can help many people but that does not mean that seeking other means of help with PD is any less valuable.
Hikoi• in reply to
You might find his experience inspirational I just find it annoying! :)I was looking at his profile and under replies and it is clear that all JP is interested in is himself and his 'right' way.
You maybe aware that he was diagnosed with essential tremor because he has a bilateral action tremor and no resting tremor. The last neuro who examined him said he did not have idiopathic PD. There are many more things JP has written that show his condition is not what you and I experience but he is "truly amazingly" persistent.
• in reply toHikoi
Oh...I'm tired of thinking I found someone inspiring to have my hopes dashed. I wish I was surprised but I'm not. My Dad has PD. I've seen the stages manifest and JP obviously has something very different than what my Dad has. One day at a time....savor every day the best we can and hold out hope for medical help.
Hikoi• in reply to
Someone who writes it takes 6 weeks for symptoms to start returning if I stop fast walking has no idea what PD is like!! No effect from sinemet either. His PD drugs he stopped was selegiline, thats it!!
More inspiring is this young onset woman
• in reply toHikoi
Oh, this feels very fraudulent because it is impossible to not have knowledge of what PD is like when the knowledge is so readily available. I'm emotionally spent.
Hikoi• in reply to
Unfortunately people here believe the rubbish. Also unfortunately he was touted in the book by the psychiatrist Doidge, not much admired by the medical fraternity.
Anyway enough of that.
Hope your sleep is restorative and you find tomorrow a more inspiring day.
• in reply toHikoi
Against my better judgement I believed him bc he was featured in that book about neuroplasticity. I’ve gone from being a fan to being outright hostile. I do not like being duped even if the duper is holding on to a well intentioned delusion. Being a martyr holds a great deal of appeal.
• in reply toJohnPepper
What purpose is there in stating there will never be a cure? Why rob us of hope?
Your experience is inspirational. Your tenacity is inspiring. But, there are so many layers to and variations with PD. You do not have a cure either but one small piece to the puzzle. No amount of fast walking could of saved my father, absolutely none. He was as tenacious as you. What you have is different.
JohnPepper• in reply to
I accept what you say, but I have not met anybody yet, who has a walking badly, who has been unable to walk normally, immediately. If they continue to practice the walking and slowly build it up t o one hour, while always trying to go faster, they will become a lot fitter and they will probably reverse come of their symptoms.However, if they don't have a walking problem then it certainly is a different type of Pd.
Remember Mr. Pepper, when, a while back, because of arthritic degeneration, certified by a licensed orthopedic physician, where I have nearly 100% loss of knee cartilage in both knees, along with ‘bowed’ legs, I am unable to walk fast. I wrote to you, in this forum, about that. Many days I’m hardly able to walk, without use of a cane, so yes, you have heard of somebody, who walks badly, and is unable to walk, normally, immediately. Let us not digress though. I am not trying to criticize your method, rather just stating that there really are some of us, where our physician’s would not recommend fast walking. If I were able to walk better, without the impediments that I suffer from, then, perhaps, I could apply your method, and see if it would help me, with my diagnosed Parkinson’s Disease, and Cerebellar Ataxia!
Hi Alexia.I apologize for misleading you and others. I normally ad the caveat 'Providing there is nothing preventing you' or words to that effect.
There are other symptoms I am able to overcome, including speech problems, successfully bringing food and drink to the mouth without spilling it, writing, attitude and others. They have nothing to do with walking but we do need to learn how to use our conscious brain to overcome them.
I can't believe a neurologist could be so flippant and unthoughtful yes the meds have moved on greatly but I have to say we are nowhere near a cure thank god for Michael j fox
Sky news carried an article today 10/2/2021 announcing that Cambridge University have made a major breakthrough I finding a cure for Parkinson’s. There have been false dawns before but they seem very confident but no timescales are mentioned.
news.sky.com/story/parkinso...
The Sky News article was exceedingly brief and implied a bit more than the scientists will acknowledge, so the news announcement by Sky was taking a bit of hype license. It's a big start though, in "almost-basic" research. So where Sky went with it was a bit misleading.
This is from a different source, not the entire summary but seemed to be the critical bits, actually visiting with one of the authors who is not quite the author named in the Sky News article.
"The new study looked at what was going on inside healthy conditions to help pinpoint what is going wrong in the cells of people with Parkinson’s. All cells in the body have a plasma membrane that protects cells and usually transports nutrients in, and clears toxic substances out.
“α-Synuclein (αS) is a presynaptic disordered protein whose aberrant aggregation is associated with Parkinson’s disease. The functional role of αS is still debated, although it has been involved in the regulation of neurotransmitter release via the interaction with synaptic vesicles (SVs). We report here a detailed characterization of the conformational properties of αS bound to the inner and outer leaflets of the presynaptic plasma membrane (PM), using small unilamellar vesicles,” the investigators wrote.
“Our results suggest that αS preferentially binds the inner PM leaflet. On the basis of these studies we characterize in vitro a mechanism by which αS stabilizes, in a concentration-dependent manner, the docking of SVs on the PM by establishing a dynamic link between the two membranes. The study then provides evidence that changes in the lipid composition of the PM, typically associated with neurodegenerative diseases, alter the modes of binding of αS, specifically in a segment of the sequence overlapping with the non-amyloid component region.
“Taken together, these results reveal how lipid composition modulates the interaction of αS with the PM and underlie its functional and pathological behaviors in vitro.”
“One of the top questions in Parkinson’s research is: what is the function of alpha-synuclein, the protein that under pathological conditions forms clumps that affect motor and cognitive abilities? Usually you discover a protein for its function and then you explore what is going wrong when disease strikes, in the case of alpha-synuclein the protein was identified for its pathological association, but we didn’t know what it did in the neuron,” explained Fusco. “Our research suggests that the alpha-synuclein protein sticks like glue to the inner face of the plasma membrane of nerve cells but not to the outer—a crucial new piece of information.”
The scientists used synthetic models to mimic brain cell membranes during the study.
According to Alfonso De Simone, PhD, from Imperial College London, and one of the authors of the paper, “When this protein is functioning normally it plays an important part in the mechanisms by which neurons exchange signals in the brain. But it has a dark side because it malfunctions and begins to stick together in clumps which eventually spread and kill healthy brain cells. Our research showed that this protein clings onto the inner face of the plasma membrane of brain cells, so we are slowly building a picture of this very complex disorder by studying the key function of alpha-synuclein.”
There are treatments and drugs available to Parkinson’s patients and the disease isn’t fatal, but nothing is available to reverse the effects of the disease. Introducing lifestyle changes including getting more rest and exercise can also alleviate symptoms.
“We have thousands of proteins in our bodies and until the function of this mystery protein is confirmed with more research, drug therapies cannot begin to be developed to tackle the origins of Parkinson’s disease in case medication accidentally affect a crucial purpose of the alpha-synuclein protein,” added De Simone."
• in reply tothfc1961
The article contained pretty much nothingDid you read it?
thfc1961• in reply to
I watched it and it appeared positive but as I said there have been many false dawns. It’s the hope that kills you
Yes the hope that kills you. Well put.
I am afraid news media are in the business of selling stories. I dont ever follow them, they are all hype. I prefer science of parkinsons and other blogs. This woman's video I found inspiring recently.
Are you not interested in trying to do what I did?
I know of many other Pd patients who do all kinds of vigorous exercise but I have not come across one who has reversed their symptoms, as I have.Fast walking does something that no other has done. I don't say that nobody else has reversed their symptoms, But I do not know who they may be,
I don't charge anybody for giving them all the information they require, I am not trying to get you to do it so I can put some cash in my pocket. I have written a book on my experience with Pd and what I get out of it does not always cover the costs of keeping the book up-to-date and paying a person to help me answer people's emails etc.
If you emil your email address I will send you my vidaos and a lot of information.
Stress seems to make symptoms worse. Hope might relieve some of the stress. Maybe she would have felt worse earlier without that hope?
I do not believe you! Sorry!
Getting messages saying people on this thread are scammers. Can you please be clear as to who specifically is doing the scamming and can admin advise how to block them
The cure will be by 2048 (My intuition)
I am sorry but the fact is like this. Until PD is spread like covid 19, governments will be least bothered with it. The current speed of clinical trials is at snail pace. If the research work is not speeded up, the cure will never be there. 90% of the research work is done for earning accreditations and degrees. After getting the degree, the research goes in the background. Most of the so called neurologists publish their papers to improve their qualifications and getting fame. They boast about their papers published in renowned journals
You mean to say that we should live in fool's paradise? We should rather awake the world about the bleak future being faced by pwp. I am not in favour of giving people a false hope.
And btw how you know that I not having PD
Please dont be offended. I m YOPD. But should we never pop up our pressure? Please give me a single example of anything on horizon right now with respect to cure? I am the person on this forum who have posted the most recent research news within minutes of publication. I know about all the research work currently going on. I spend every second of my day on updating myself on the latest research. I have seen many trials which I follow for years and ultimately get failed. The root cause of PD is still a puzzle. However I beg apology if you have felt hurt!
• in reply toFarooqji
I am having a very hard time coping with my diagnosis. My father is in stage 5 of PD. I need hope to get me through the day. I am not as strong as you. I thought I was defending other emotionally vulnerable PWP. I still think my point is valid but since it was so poorly received I am apologizing to you. I am sorry.
In response to this exchange and the negative exchanges I have had with CaseyInsights, my intention is to not be so active on this forum or remove myself entirely.
Some people need to cling to the hope of a better future.
My Dad begs for his life to end and I can’t help him and that is a fate I can not face for myself as well.
pdpatient• in reply to
@cclemonade, I can't wait to see your blog and the content. I am myself contemplating one, but I can't get the nerve to use my real name and likeness while authoring. There is unfortunately a lot of negativity out there with most people identifying Parkinson's with Michael J Fox or Mohammed Ali and all they see is tremor and dyskynesia. They don't see the emotional and physical trauma that accompanies us every day and night on and on relentlessly. Even on my best days, I worry about what might be in store for me tomorrow! I am in the 9th year after diagnosis and I still work, but it comes with an extremely high price. People are not just used to a person they meet who seems to be in such terrible pain one day or moment and is happy and calm the next (after levodopa kicks in 😬).
We need more voices and I know that this is an older thread and I have watched you evolve in the short time that I have observed you. I was initially surprised at your rapid evolution, but then again that is the mark of a resilient individual who is experiencing a temporary setback from the shock of diagnosis. Don't give up on the blog and inspire everyone. Involve your dad. It will make a huge difference. Even some of the best informed Parkinson's laypeople are not aware of hereditary Parkinson's or proximal Parkinson's where people are exposed to the same environment or experience and develop the condition either simultaneously or serially.
Good luck and God speed.
RKM
I have no energy to debate further on this topic.
Let me barge in ... after all it is a forum.
Stats Farooqji
Joined: September 11 2017
Post: 848
Followers: 65
From my little time on the forum the majority of these post I have seen referred to research items. If any one is allowed an opinion on the state of research is this guy.
If you don’t like his intuitive feel that ‘The cure will be by 2048...’, then put on your rose colored spectacles and go tramping through life. But give him a break 🤫
I have found his post a refreshing reminder of how unrealistic it is to believe a cure is around the corner📌
• in reply toCaseyInsights
I believe you don’t have PD, correct? And you are the lovely fellow who said in a previous thread that you were rolling on the floor laughing at me in response to my sincere question.
I think taking away people’s hope is cruel.
If that is beyond your comprehension, there is nothing left to say.
CaseyInsights• in reply to
‘I think taking away people’s hope is cruel...’No one owes you a rose tinted future. It is what it is🕴
🕊
• in reply to
hi cclemonade:
IMHO you were way out of line in your exchange with Farooqji. He did nothing wrong, and is a solid contributer to this forum... I share his view of the sad situation we are in, and see no benefit in living in fantasyland...
Serenity Prayer: “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference."
• in reply to
I appreciate your opinion. Because I can not emotionally handle the negativity especially when it serves no constructive purpose, I intend on decreasing my time on this forum as I don’t have the emotional strength for it.
I thought I was defending others who are emotionally vulnerable like myself.
I will apologize to him and work on having the will power to not be on this forum since it is so hard on me.
ion_ion• in reply to
I went through the same ordeal like you until I accepted the situation and I regained my optimism and confidence. PD is not just a neurological disease (hardware) but a psychological (software) one, too. I'm in my 5th year and I do better than I did in the 1st year. HDT and my attitude helped a lot. I'm still working full time like an engineer and I'm 66.
I had my best friend whose RH started to shake in 2013. He did not have PD but brain tumor. In 2015 was gone. I was luckier than him. Our PD depends a lot of us.
Do not leave! You will find common ground with a lot of people here. Also there are a lot of people who can have different opinions but they respect everyone. Do not get impressed by the negativism!
laglag• in reply to
You have been a very inspiring addition to this forum. You're a go-getter and thorough. Please don't leave.
Kwinholt• in reply to
Cc, Unfortunately there’s negativity everywhere. Don’t go away, there are a lot of compassionate people hear. I have been diagnosed since 2013 and had a hard time believing it as well. “ I’m an athlete , marathon runner. It can’t happen to me!” Well I was wrong. Exercise is very important and I got interested in that “cure” of fast walking but I was already an intense exerciser and was politely told what I do (marathons, Spartans, 50 milers , 50k) doesn’t work only the fast walking. We are all so different, with different symptoms but have PD. What works for some, doesn’t always work for others but worth a try if it’s something that interests you. Let’s face it , there’s no cure right now but there’s promising things out there. Chin up! Karen. ❤️
Cc, listen to Karen. She a speaks the truth and is wise at that!
ConnieD• in reply to
Don’t leave cc we need positive people on this site! I’ve enjoyed your posts and we must always be hopeful, I remember when I first came on this forum someone said to me you never know what might be just around the corner. It is how you look at it that matters most. Take care, Connie
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I have noticed, many times, clinicians and hopeful researchers, and others, will tell patients, with serious, incurable diseases, that a cure is just around the corner, or maybe soon, research will have a breakthrough and a cure will be found. I realize that that may be giving hope to some patients, and then there are others, who prefer to know the unvarnished truth of a diagnosis, so that they can find a practical way, to cope, and live with the ailment. Neurodegenerative diseases are difficult to live with, and treat, many times, and taking the hope element, out of the equation, needs to be carefully evaluated, by health care providers, when discussing ailments, with patients. Giving a person false hope, can be devastating, but, by the same token, many of us need to feel there is hope for us, as we deal with difficult symptoms, and, in some cases, loss of some functions. I believe this to be an interesting topic, to discuss, in this forum. For some years, as I have been slowly declining, suffering from neurodegenerative disease, with movement, and other aspects, related to neurodegenerative disease, I have often reflected on this view of treating neurodegenerative processes. Research can bring hope, so I function better when I think of that! An example of how I like to think of this view of research, is the story of the coronavirus. For a number of years, researching and coming up with effective vaccines, for most known Corona viruses, seemed most difficult, so when COVID-19, became a world wide pandemic, many researchers shuddered, and yet, some took up the challenge, and effectively came up with workable vaccines, within a short period of time ( considering that the processes involved with trials, and proving effectiveness, can be very time-consuming, sometimes taking years to come up with a viable, effective vaccine )! Perhaps, if more efforts were put toward an awareness of the nature of many progressive neurodegenerative diseases, more aggressive research could come up with some answers, that could help with, for example, preventing disease, or stopping progression, before it gets so disabling.
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