i am 77 years old and unil recentlr was digustingly healthy.
I only retired a year ago but in that time, I fell, hit my head and have been robbed of everything--Pd is awful!!!
Without overdoing it,I worked hard all my life to NOT end up like I am.
I live with my sister now and my son is selling my Condo where I lived until October, 2022 with my Chinese Sharpei, Charlotte. Luckily, my sister and her family are long-time Dog lovers and took her in wiht me.
my Doctor suggested he'd heard about B-1 therapy im December but it's taken me this long to find anything on this adjunct treatment.
jo
i
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jhaney3579
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Your doctor is a keeper - unsually open-minded about treatment.
Regarding High-dose thiamine/B1. Dosing instructions and other information at the links. Many people with Parkinson's have benefited from this treatment. Allow four months for full effect:
PD is a many headed beast,and needs to be kept at bay on multiple fronts.Exercises specifically designed to help are on the web,PD warrior classes are brilliant,and even if you can only do them in a limited way they are a life line.It’s exercise to use your brain in a different way,not just to work out your muscles.Start today!!
High dose B 1 therapy works, So does low dose Lithium. Probably probiotic strain 128 and red light therapy as well, plus antioxidant regimens. It's suggested to try one thing at a time and stick with it for a few months before adding or moving on - to correctly evaluate it. Good luck
I tried B1 but it didn't help. Then I tried Ceylon Cinnamon and that also didn't help. I've tried several different treatments but nothing other than Rytary worked.
Hi Jo, I found the first year the trickiest to navigate. How to deal with my new reality was so hard. The upside is that I have managed to figure out my medications with a lot of trial and error. These medications at least take the edge off of some of the nagging symptoms that I was dealing with: tremor, orthostatic hypertension (fainting), stiffness, pain, fuzzy head, sleepiness, insomnia at night, and etc. As you know, the disease is so different from person to person (snowflake disease). I have found the Zoom call on Saturday and Sunday to be a great way to network and the people understand exactly how we feel. Hope you feel better in time! You are not alone. Cheers
Although it is good to get started immediately with exercises and medication. Yet it may be even more important to try to find a different mindset first. You are in a kind of split; without a positive attitude, the medication has probably little impact, making you feel even worse. I understand your anger disappointment at losing your "old" life. That painful experience is something all of us have had to deal with. I don't want to come across as pedantic, but believe it or not, new challenges and new opportunities await. It doesn't always have to be less. I almost dare not express it to you (and myself), but I am (sometimes) even glad that this has happened to me. Experiencing the intensity and essence of life, the new priorities, the more conscious lifestyle, your family and friends, what is it really all about, and above all, enjoying it! That realization is almost like an epiphany. According to the recently released publication of neurologist Dr. Maldonado only two treatments could halt the progression: exercise and pleasure by increasing the body's own dopamine. Of course, as he indicates and provides valuable information, it is important that you benefit from sensory diet, food, sleep, microbiota, etc. and at some stage also natural or/and pharmaceutical levodopa is needed. But don’t forget to live fully while you can hopefully do so for a long time to come, and above all, keep smiling Jo. Try to read his recently published book (also on Kindl). Really it gives hope and helps raise your dopamine levels! 🍀🍀🍀
"Ecological therapy for Parkinson's disease: Medication, late and little" (English Edition), Rafael Maldonado (Auteur)
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.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
So there is even realistic hope for stopping progression and eventually a cure.
It's wonderful that there are hopeful studies underway, but you can't wait for that. Start right now with what is good for you and what makes you happy. Living in the present, not the past or the future, is certainly important for you and all of us. 🍀
you are in the right place. You will find very many kind, educated, and forward thinking people on this website. Hang in there, it’s not as bad as you think.
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