This forum is dominated by senior citizens most of whom I assume are retired and many are grandparents.
As senior citizens, you are able to take a different approach to life and to disease than YOPD. And some with YOPD have multiple diseases adding yet another layer of complexity.
Determining one’s protocol and methodology is going to vary greatly depending on one’s stage in life and whether or not one has other diseases or syndromes.
Just taking the “standard course of treatment” for the elderly does not translate well to someone much younger. And taking meds to just “enjoying the now” at the cost of worsening or augmenting the disease does not apply so well when you likely have 3+ decades to go.
People with YOPD are far more inclined than the elderly to try and optimize as much as possible, are far more ambitious, and have to take a much more cautious approach with medications (which often worsen the long term prognosis) We are at a different stage in life. For example, in my personal situation I have been advised to take a med that is proven to increase dementia risk. If I was 70, I would “keep it simple” and take the med. It’s not so simple when you are in your 40’s.
The unsolicited life advice I receive which is only coming from senior citizens talking to me as if I too am 60+, is alienating not just to me but all the other YOPD forum members most of whom stay in the wings.
So, I’m reminding this forum of the obvious, YOPD is not only a different disease it is a different stage in life and requires a different approach.
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there are some great Facebook forums for young Onset PD. I agree that the course of action varies greatly depending on the age of onset. I think everyone here does the best they can, and often can be extremely helpful. But that said, if you’re looking for a different approach, some of those Facebook groups might be worth checking out. I particularly like the Parkinson’s alternative healing Facebook forum. And if you are into the B1 therapy, Daphne Bryan has a wonderful Facebook group that is very encouraging. And the members are wonderful. I think it’s called Parkinson’s B1 therapy.
I too was diagnosed in my 40s. I hear exactly what you’re saying about medication and starting too soon. Please know you’re not alone on this forum. I’m hoping to learn from some of the members that have more experience, and are older than us. They may have had PD for 20+ years. We shouldn’t assume that they’re all newly diagnosed.
Best of luck to you. You are in my prayers. We’re gonna fight this.
(I do talk to text so please excuse all the weird commas and punctuation errors)
Older does not necessarily mean more experience worthy of sharing, sometimes just a lot more time milling about. ☺️. But truly, it is those who have “had it” for many years, those with the experience at fighting it, who I personally find the most inspiring and love to learn from. I really look up to fellow YOPD who have been dealing with this for 20+ years. They are mentors and I wish more would share their stories of struggle and triumph.
I think my point may have been misunderstood. YOPD is very different from late onset PD and the latter giving advice to the former without taking that in to account can be dismissive (in my experience)
SOME TIME NEXT YEAR YOU SHOULD BE ABLE TO FREEZE PROGRESSION OF WHATEVER STAGE YOU HAVE REACHED.
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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. 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 getting Bydureon. cureparkinsons.org.uk/news/...
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.
Tried the same thing before with foreign stem cells from other monkeys and had some success until local immune systems attacked foreign cells.
I appreciate your intention of lifting spirits with the hope of Bydureon but that’s not the subject and I do not share your optimism about it. It is replication of what can be achieved with keto and fasting. I was prescribed it off label and am weaning off it. I will not elaborate further here as I do not want to drift further away from the intention of my post
autologous stem cell infusions are being researched and hopefully they can provide some help along with other recent research developments
Fair point, well made. I’m 60 & still working so I’ve got a foot in both camps. I tend to shrug my shoulders when problems arise but I always did. That said what you’ve written is right & duly noted.
True, we all are experiencing different stages and years of fighting our battles. I fell in the middle at age 50, but love our wonderful community and everyone sharing their ups and downs.
get your point- I’m 60 but I have teenage kids and as I’m self employed I can’t imagine being able to ever retire- there’s quite a mixture of ages and situations. I like the mix of age and experience (and years diagnosed) of this forum and the variety of responses that brings. I’m so absorbed in bringing up my kids (with complex parenting needs) that I rely on others on the forum that have a bit more time and energy maybe than I do to research.
On the other hand I go to a local PD exercise class where I’m by far the youngest and I try and get other members to try what I fear are seen as my whacky suggestions!
Your perspective needs to be heard, and, I suppose, looking at the early onset of Michael J. Fox’s PD, the way he’s had the YOPD, compared to the older onset, of PD, it is a completely different set of symptoms, and trials, and struggles! Uncontrollable limb and head movements, at times, for Mr. Fox have been extremely debilitating! Oftentimes, older onset patients don’t have that symptom, as much! So, indeed, I would agree, YOPD is a different ‘animal’, so to speak, than older onset, comparatively! However, because of the nature of PD, variable symptoms can present themselves, in different ways, during the 5 stages, of having PD! It is very unique, depending upon neurodegenerative areas of the brain affected! I like to think of PD as a snowflake Disease, where each person has PD in their own unique way! Thank you for your perspective contribution!
I’m very sorry to hear that. It would be of great value to all to learn from his experience from both a scientific and emotional perspective. I realize in hindsight that I had a list of prodromal symptoms in my 20’s.
I am a 54 years old physician-internist and I was recently diagnosed with PD. I had symptoms for the last 2 years and although I knew the possible diagnosis, I was procrastinating going to a fellow neurologist, up until I got fed up and I went. He put me on requip 2mg qd and after I got to know myself regarding the whole situation, I increased it to 4mg myself with partial improvement. We share exactly the same thoughts and feelings. I have spent the last ten months reading about PD and talking to different neurologists all over Europe and the States. I ended up spending 50k euros-I almost went bankrupt, with all of my trips, meetings, physician appointments, etc.
I am going to be cynical-most of them they do not give a f.....g s..t (pardon my language.). Just a prescription and adios. I am still trying to get into a clinical trial but most of them are a true waste of money and time-I know they are not going to work..... For example, some mAbs, BIIB094, etc When you see a change in the primary end-points in a clinical trial (and delayed reporting of the secondary end-points, be wary).
Currently I am working on a cellular rescue treatment scheme/plan on my own, trying to save what I can possibly save. Most PD "experts" they do NOT follow this approach. For us this is exactly what we need, the more cells are viable, the better the functional outcome will be..... I have spoken in person to some "authorities" who are true a......s, sorry again. All they care is to get funding for various "vanity" projects, projects that an informed scientist knows they are not going to work for the majority of PD patients, patients with the "idiopathic" form of the disease. We have to save cells that are active, cells that are in hypnosis, cells that are dysfunctional and cells that are on the verge of dying. And I do believe that in PD cells in other CNS locations also suffer, not only in SNpc, as is the current dogma. I hope that something useful will come out of my adventures in the PD land. Currently, I am looking for a PD specialist, who can help me try to put into effect a some kind of a rescue treatment plan. I will keep you posted. Stay positive and optimistic, that is the only thing that is left for us to do. Ioannis Rigas, MD, MPH
It seems you might be in a position to get FMT through your contacts in the medical field in an off label use situation. Per haps that could be one positive avenue you can pursue with good potential to actually get it for yourself.
To be honest, I am not convinced that FMT will work in, at least, my situation. I am pursuing other avenues and if anything useful transpires, I will keep you posted. IR
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