Hi, I was diagnosed in 2018 having started with symptoms in 2012 and seeing my GP as they got considerably worse in 2015. I hope to be able to learn how others cope with aspects of PD and hopefully be able to encourage some with what I've discovered works for me so far. Although I had to finish work as a special needs teacher before I knew it was PD I don't want it to define who I am or what I do.
Hello, new to the community: Hi, I was... - Cure Parkinson's
Hello, new to the community
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powerliftingtobeat
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Powerliftingtobeat, welcome to the forum - it seems that you are on the right track with exercise (love your name!) and you'll find a lot of valuable information here, as well as peer support - just keep a notebook handy to write things down. A lot of members use Dr. Costantini's high dose thiamine (HDT) protocol which is worth looking into. Keep us posted!
Contrary to what the medical profession say we are able to reverse Pd symptoms by doing various things, including Fast Walking.If you would like to find out more about what I do then Google My Name, John Pepper, and contact me. I do not charge anybody for passing on all the information I have on the subject.I look forward to hearing from you.
I have been Pd medication-free since 2002 and have had Pd symptoms since 1963.
There is no cure, but we can live a normal life, if we are prepared to put in a little effort.
I will do that thank you for your message John.
I look forward to hearing from you!
John, does it make any difference that my tremor is caused by the Parkinsons not the medication? At first glance you write about symptoms caused by the medication. Pardon me if my questions initially are a bit thick, I'm only getting 3-4 hrs sleep at night just now due to crmps and joint pain.
Tremors are usually a Pd symptom. I have not heard of anybody getting tremors as a result of medication.Some Medications cause Dyskinesia and other symptoms. Dyskinesia is unwanted and uncontrollable movements of the limbs. It is not painful but does not look nice and makes the patient tired.
I get confused with this as I read about some people who discuss their symptoms as being tremor related to medication? To be fair I've not done a lot of reading about it,
However I have been told the pain I get is a symptom. During the period of time between first showing symptoms and diagnosis (6 years) I was treated for chronic pain while having surgeries for a arthritis in my right wrist and there was some concern as to why the tremor didn't improve and the pain got worse. In 2015 a GP told me I definitely didn't have Parkinsons. This led to an ulna nerve transposition. When this also failed the hand surgeon I was seeing referred me to UCLH, after a discussing with me his concerns. This was 2017 and the diagnosis came on Feb 2018. Typicall I wake up between 2 and 3am in pain. Muscle pain from cramps and pain in my neck, and other joints and need assistance to get out of bed. This is when my exercise routine starts. Walking around the house, gentle stretching and band work until I can move comfortably. Sometimes i get back to sleep more often not. I'm learning about it and listening to what people say, but am finding that the only thing so far I know works for me is my powerlifting and walking.
Tremors exhibit as a shaking limb or limbs. Dyskinesia affects the whole body. The head, arms, and legs, when the patient is unable to stay still. It is more violent than tremors.
Thank you for your responses I appreciate your patience. I do get an uncontrolable tremor a couple of times a day, sometimes when I stand having dozed for a while and sometimes when trying to stand still like in queue. Otherwise my tremor is mainly the right arm. How long did you have Parkinsons before you developed your programme? Did you take any meds? What stage/level was your Parkinsons? Are you completely free of it, or is it still there but well controlled?
There is a difference between a tremor and Dyskinesia. Dyskinesia is caused by too much levodopa medication. Do you take a lot of levodopa medication?
I've just been watching a You tube article about you. I take Madopar 100mg/25mg (Levadopa + Benserazide) 10 x daily. 2 at 7 am then every 2 hours with 2 at 9pm. Then 2 x 8mg Ropinerole. I am going to try your programme, I walk most mornings and concentrate on posture and allowing arms to swing. I know this has a positive my powerlifting at the moment has a greater effect, or so I feel. It could just be the high I still get from having a competitive goal.
You are talking a lot of drugs and they have side effects.Have you found that all those drugs you take, hide some of your symptoms, and do what they were purported to do?
My Pd symptoms started in 1963. I was finally diagnosed with Pd in 1992. I took Sinemet & Symmetrel for two years and because none of my symptoms had improved,I asked my neurologist to stop them and prescribe a drug that does slow down or reverse the symptoms. He then prescribed Selegiline, which is an MAO-b inhibitor that inhibits the natural breakdown of Dopamine. As we don't have enough dopamine, it does not make sense to allow the body to break down the small amount of dopamine we still do have.
I took Selegiline for the next 8 years, by which time my movement symptoms had improved so much I was able to come off the Pd drugs and have lived a normal life since 2002.
The Selegiline was not the only reason why I got better. At the same time I went onto Selegiline I stopped going to the gym for 90 minutes a day and started a fast walking program, which builds up, for most people, from ten minutes three times a week to one hour three times a week.
I also got rid of as many things that caused me stress as possible; started to do BRAIN exercises; changed my outlook to being POSITIVE; and learned how to consciously control my movements and over-ride the normal subconscious control.
I am now 86 and have been Pd-medication-free since 2002.
I hope this helps you!
It does thank you. It seems that every medication I've tried has only had a short term positive effect. The best was Apomorphine but it made me faint due to blood pressure dropping. The Madopar does have an affect bu even with the Ropinerole it doesn't last the 2 hours and takes about 20 mins to start working. My neurologist has suggested DBS, but I am hesitant. I have noticed that when I do exercise whether my lifting or walking my tremor vastly reduces and often doesn't start at the point which the meds are usually losing effectiveness. To the extent I have forgotten them on occasions. Thank you for all your time chatting i am going to try your fastwalking programme. All the best to you.
Good luck! Don't give up! Start at a level you can manage without slowing down, then build it up slowly until you get to one hour, three times a week.For full details on walking, Google my name, John Pepper, and contact me. I will send you all the information, free of charge!
Morning John, thank you for your support. I have filled in a contact form having googled you. I will make a donation to Parkinsons Research, do you have a preference. Would I need to stop my powerlifting? I amld be close to getting a British Masters Qualifying total, which was a target I'd set myself. It would be great to reduce the tablets eventually and hopefully avoid having DBS. Thank you once again. I will keep in touch and let you know how I get on if that is OK.
When I was diagnosed in 1992, I was told there would soon be a cure, but either they are not looking or they don't know what they are doing. For COVID they took less than a year, but that was because it was killing people. Pd does not kill us so they would rather find another treatment. I think Parkinson's Research has no commitment to find a CURE!
I would like to make a donation to a cause that has your support then please. I think in my heart I feel the same, there does seem an element of just increase the meds. In 2015 a GP told me "you don't have Parkinson's, and if you did would you really want to know? It's incurable." This was in response to my requesting an assessment as my symptoms were becoming more debilitating and pronounced since originally enquiring in 2012. I feel very determined to beat it as much as I can. Every day I make myself do something I find difficult or near impossible to do.
in reply to powerliftingtobeat
Please donate to the Michael J fox Foundation. They are making great strides towards better treatments. Anyone that tells you there is some disincentive to find a cure is pushing a very easily disproven conspiracy theory and should be ignored.
Will their be a 'cure' in your lifetime? Quite possibly not, but if you care about your kids, or simply those that will get PD in the future, please consider donating to the MJFF.
JohnPepper in reply to
You have some sort of purpose for doing what you do. If you were the least bit interested in the quality of life of Pd patients, he would go to the trouble to investigate what I do with real people and how I help them to overcome many of their symptoms.
Here is just one letter from someone who knows something good, when he sees it: -
Email from Simon X
2017/10/13
Hi John
I wanted to let you know about a man called George who you empowered to walk at your event in Wanstead, even though he arrived in a wheelchair. His wife was very moved when she saw him walk upright and even briskly and it reminded her of biblical scenes. He has since walked on more occasions and his children now encourage him to walk. One of the ways in which this has enriched his life is that he can enjoy his garden again and potter around happily. I understand that his walking has already led to improvements in his general symptoms as well as his self-confidence.
Best regards
Simon.
Wanstead,
London.
So, you carry on your destructive criticism and I will get on helping other people!
I didn't realise I was responding to Chris WF. So in brief I have looked around enough aand am committed to making my life better for me and my family. Because of my own positive experience with the effects of exercise I believe your programme will work and will give it 100%.
Thanks!
powerliftingtobeat in reply to
I will do that, I do subscribe to MJFF. I learned a lot already talking to you and others in this forum.
As far as I am concerned, I am quite convinced that looking for cures for chronic illnesses is a bad business decision. They make far more money treating the symptoms over many years. I understand that decision! It costs s fortune to find a cure, and it cannot be justified!If a health condition kills the patient then rather make the money on making a vaccine of an outright cure!
ChrisWF has some sort of purpose for doing what he does. If he were the least bit interested in the quality of life of Pd patients, he would go to the trouble to investigate what I do with real people and how I help them to overcome many of their symptoms.
Here is just one letter from someone who knows something good, when he sees it: -
Email from Simon Griffith
2017/10/13
Hi John
I wanted to let you know about a man called George who you empowered to walk at your event in Wanstead, even though he arrived in a wheelchair. His wife was very moved when she saw him walk upright and even briskly and it reminded her of biblical scenes. He has since walked on more occasions and his children now encourage him to walk. One of the ways in which this has enriched his life is that he can enjoy his garden again and potter around happily. I understand that his walking has already led to improvements in his general symptoms as well as his self-confidence.
Best regards
Simon.
Wanstead,
London.
So, ChrisWF, you carry on your destructive criticism and I will get on helping other people!
in reply to JohnPepper
What i am interested in is preventing the newly diagnosed from being hoodwinked. I wasted a bunch of time (that i wont get back) reading into a bunch of 'recovery' or 'reversal' protocals and i wish i would have had someone to steer me away from them, so that is what i am doing here.
Ive no interest in your wheelchair healing stories. The reason many PwP (and others with disabilities) are in wheelchairs is that walking is dangerous or tiring, not becuase they cant walk 20m across a stage at a presentation.
powerliftingtobeat in reply to
I respect your opinion but have already experienced the positive effect of exercise. When diagnosed I had poor balance, shuffled around, would freeze, fall and trip, couldn't even dress myself without help. Through introducing regular exercise including progressive resistance training which has led to powerlifting after a study my daughter had done I am now walking regularly, have balance and generally feel better. I'm not entering a philosophical battle but am willing to try anything that might work and may prevent having to have DBS because meds seem to have such a short window of benefit.
in reply to powerliftingtobeat
Whoah whoah whoah. I am NOT anti exercise. And John is only in favour of his specific brand of fast walking, which he claims has scientific benefits (the science of which he literally made up) over and above ALL other forms of exercise. There is zero evidence for this, and in fact the studies indicate that you need to get your heart rate above 80% of your max. I will leave it up you to judge whether 'fast walking' will achieve that, but it certainly doesnt for me.
If you really want to slow the progression of your PD and are willing to put in serious effort, read these articles. You can then draw your own clonclusions about the types of exercise you should do.
jamanetwork.com/journals/ja...
ncbi.nlm.nih.gov/pmc/articl...
In summary, you need to be sweating your ass off at 80 to 85% of your max heart rate for 30min 3 times a week. Its likely that the exercise you choose to get there doesnt actually matter that much.
powerliftingtobeat in reply to
I will read them,
JohnPepper in reply to
Wow! You sound exactly like the 'Eminent' Neurologist who engineered my removal from the position as President of our National Pd Association, after more than five years in that position.
She accused me of misleading patients; claiming to be cured without the use of Medication and using the Association to sell my books! All of which are lies! Nowhere in my book do I claim to be cured and I mention my medication fifty-seven times. She must have missed all that; if she read it at all. It turned out that the Director of the Association was selling the books and pocketing the 40% mark-up.
The Medical World makes a fortune out of treating the symptoms of chronic illnesses!
So - Why do I want to 'Kill the Goose that Lays The Golden Egg?'
in reply to JohnPepper
Thank you for that off-topic rant.
Most PD meds are off patent and (consequently) low-margin, by the way.
JohnPepper in reply to
You carry on about me telling people that Fast Walking and other exercise is a viable option to taking medication, and the only chance of slowing down the progression of Pd. That is a FACT, and every newly diagnosed patient has the right to know this FACT.
Every Pd patient who is on medication also has the right to know that there is a viable alternative to medication!
Every patient, either just starting or having been on medication for a long time, also have the right to know that medication has serious side effects and does nothing to slow down the progression of Pd. Nobody else tells them that!
I do not tell patients about these FACTS, so that I can sell my BOOKS, I do it to give people HOPE, where there is a reasonable possibility of getting better. They don't have to buy my books in to enable them to start getting better, they are free to get as much information from me and others. I know that fast walking gives the best results and I get nothing out of people doing fast walking, whereas others promoting Boxing, Dancing, and many other forms of exercise, all charge for making those methods available.
So, stop bad-mouthing Fast Walking, and me, because telling everybody about their rights to know, is not a selfish thing to do, it is beneficial to patients!
Whereas, I am convinced that you personally stand to gain from patients taking medication, whether you are employed to do that or you are part of the medical world who makes a living out of patients using medication.
in reply to JohnPepper
Some forms of exercise have been demonstrated as (probably) slowing progression. In this article, only high intensity (i.e HR of 80-85% of max) was considered to warrant further investigation. Moderate intensity exercise (60 to 65%) was not considered to warrant further investigation.
jamanetwork.com/journals/ja...
There are several other studies that indicate that high intensity exercise is what counts. I'm not going to find the links because I know you won't read them. If others want them, I will find them.
Whether Fast Walking results in heart rates of 80 to 85 percent of max is really up to the individual. It does not for me. It may for some. Other exercises, like cycling, may also drive the heart rate up high enough to achieve the desired outcome. They may also have their own specific progression altering aspects (and this is under investigation, for cycling at least)
The point is: fast walking is not special. Yes, it is exercise. No, it does not have a flight or fight derived special GDNF triggerer that separates it from other forms of exercise.
"Every Pd patient who is on medication also has the right to know that there is a viable alternative to medication!"
Fast walking is not an alternative to medication. If it was, you would be able to cite fast walking success stories that have ceased medication. You cannot. After 17 years, 20,000 book sales, thousands of forum posts and (according to you), numerous testimonials, that you have not heard from a single PWP that has ceased medication and stayed off it long term is, in my mind, unimpeachable evidence that fast walking is not an alternative to medication. Notably, no forum poster (that I have seen or heard about) or Facebook poster (in the PD groups) has ever mentioned that they have replaced their meds with fast walking either, and I, at least, have never seen a comment from a PD veteran (i.e closing in on a decade post dx) that suggests they are med free and fast walking instead.
Exercise is adjunctive to medication in Parkinson's Disease. It is not an alternative. (after the first handful of years, anyway).
"medication has serious side effects and does nothing to slow down the progression of Pd. Nobody else tells them that!"
99.9% (well, most of them anyway) of movement disorder specialists and neurologists would address these two issues during consultation. In any event, everyone already knows that PD meds have potential side effects and do not slow progression. What you are evidently incapable of grasping, and you demonstrate this weakness whenever you post "SO WHY TAKE THEM IF THEY DON'T SLOW PROGRESSION', is that PWP need meds to function on a daily basis. We need them because, as I pointed out above, exercise is adjunctive, is is not an alternative.
"I know that fast walking gives the best results and I get nothing out of people doing fast walking, whereas others promoting Boxing, Dancing, and many other forms of exercise, all charge for making those methods available."
Fast walking does not give the best results for anyone fit enough that walking will not bring their heart rates up high enough to enter the 80%+ zone. This has been documented in multiple studies. I appreciate that you have no interest in reading them.
As for what you get out of it, you have multiple books for sale (surely you have covered your costs by now) and literally solicit donations on your website. Perhaps look in-house before you look to tar every other exercise option as being beholden to commercial interests.
"Whereas, I am convinced that you personally stand to gain from patients taking medication, whether you are employed to do that or you are part of the medical world who makes a living out of patients using medication."
You are convinced of all sorts of stuff that isn't true. Trying to convince you of any ideas to which you are not already married is futile, and the stories of other posters on this board reflect that. It is with considerable arrogance, though, that you have the temerity to accuse others of having conflicts of interest when you literally have books for sale and solicit donations on your website.
I have no issue accepting that for some PWP:
a) fast walking puts them into the high intensity zone; and/or
b) fast walking is as high intensity as they can go.
This does not mean, however, that "fast walking" is the appropriate blanket advice for all PWPs.
powerliftingtobeat in reply to
I do think you are missing the point. I don't think John is claiming cure or a meds free future. He is suggesting a structured approach to what many find helps their symptoms. Intensity, frequency and duration of exercise remains relative to age and existing physical health. Fast walking can raise your heart rate to a beneficial level, 220-age x 40-50 or 50 -60 or 60-85% of the max working rate. Maxing out with the state a lot of us or in would most likely give a stroke. I would try anything that could help improve my symptoms and if it can reduce meds its win win, if all it does is make me feel better its still a win
in reply to powerliftingtobeat
I think you are missing the grievance that many of us have with john. It is not that he promotes exercise. Frankly, its not even that he promotes walking.
"He is suggesting a structured approach to what many find helps their symptoms"
This is hugely reductive, and strikes me as something that only someone unacquainted with years of john's forum posting would say.
Some of the issues that people have with john:
1. Stripping away your generous interpretation, what he actually claims is that fast walking is superior to all other exercise because it forces our body into 'fight or flight' becuase it is not 'natural', and consequently our body produces more GDNF that then heals our dopaminergic neurons, which then 'reverses' our PD.
There is no evidence for any of this. In terms of where fast walking stands in the exercise heirarchy when it comes to slowing PD, i can only suggest you do some more research. If you read all of the recent studies and you still think that 'fast walking' will achieve what the studies conclude that you need to achieve, then that is great. It doesn't for me.
2. He does imply that his 'patients' (yes, he does call them that) can cease medication if only they follow his protocol. So I politely suggest that you are wrong when you say that "I don't think John is claiming a meds free future ". In fact, the primary limb of his sales pitch is that he has been med free for 30 years (or something). That is why mentions it in almost every post.
If i came in here and said "i have a pill that you can take. It enabled me to stop all of my PD meds. Please contact me so you too can take the pill."
Would you conclude that i was implying that you could stop all of your PD meds if only you took the pill? I think you probably would, and that would be a reasonable conclusion.Now imagine if, in conjunction with that, i was relentlessly negative about PD meds. What would you think then?
Because that is what john has been doing on this forum for years. Hell, there's no need to take my word for it, it's all written down.
If you really want to get up to speed on exercise for slowing PD progression and reducing the severity of PD symptoms, i suggest you join the 'Parkinsons Exercise Research Group' facebook group and start by reading the links posted by Karen Raphael. She also posts here but not often.
The beautiful thing about reading a bunch of studies (at least when it comes to exercise) is that you can start to see where the trends are and this will help you form your own bespoke exercise plan, as guided by what you enjoy and are capable of. It's easy to buy the ideas of the first guy that promotes himself to you but you owe it to yourself and your family to at least make sure you are educated about it. In my view, anyway.
Gioc in reply to
Chris you will surely have a personal experience with these exercises, why don't you describe it to us, what improvements you have brought to your PD, maybe in a separate post. It would be much more useful than arguing with JP.
Welcome to the family that nobody wants to join! It’s hard to welcome people because you don’t want to say “I’m so glad you’re here.” 
however, I think you’ll like the group. I’ve learned so much since joining, and have also made good friends. It really does help to have a community like this.
You mentioned SLEEP and a lack of it. Here is a link to a recent posting by Chartist titled
"In Pursuit Of Restful Sleep And Help For Nocturia"... a 'little' reading to get you started.
I have started to use the melatonin with good results. Like you I was uncomfortable and getting 3 - 4 hrs of sleep a night, sometime almost zero sleep... hope it works for you.
Thank you I've looked at that article and am going to try it.
Thank you, Sapeye. I like melatonin but I feel not wonderful the next day after I use it even if it’s a low dosage. I’m not sure maybe it doesn’t mix well with medications for me? Or maybe I should try another brand. Anyway thank you so much for the information. I will definitely check it out. That’s great that the melatonin is working for you. Yay!
Are you also taking Mg at the same time,. My Neuro recommended 6oo mg of Mg Bisglyconate (Sp?) for cramping , constant for me so I just take one of the 200mg pills with the Melatonin, the rest are at the irregular feedings in the zoo.
Yes there are a lot of brands,, depending where you are.
I'm in Lincolnshire in the UK. I've been looking on line and found what the article about sleep suggested, and have e-mailed the Parkinsons nurse to just check their view. Thanks for your suggestions.
Nurses can't really give advice on what to take. My sleep has been much better since I have been taking 10 mg of melatonin per night. I was taking less, but found no positive impact
The nurse is brilliant, and is a practitioner, but checks anything he can't advise on with the professor. I just wanted to know if there were any complications between that and what I take? Having said that here I am at 2 45am looking through ways to help me sleep!!
I am, thank you. But it sounds like maybe I should check the type I’m taking just in case. I’ll do that thank you. And I’m sorry about your cramping. I hate that. I have it when I perform what used to be just a normal movement, ugh!
I use John Pepper's fast walking program and have been very happy with it. Google him on YouTube. What he discovered on his own is fascinating. I do other things too, but on his recommendation try to give myself a break between days of workout.
Just get as much exercise as you can without hurting yourself. Just include as much cardio that you can. Being strong is great and the easy one. Endurance is more important and harder to increase. As the pain you describe sounds more like arthritis. If it is from PD your meds should relive it.
In my 8th year of PD (14 now) i started crossfit and did it for 3 years 4 times a week. It help me get my strength back. It still helps today. I was 60 then. I worked hard all my life so i had not lost any muscle mass. When i stopped i could dead lift 415 pounds.
Thanks for that Bailey, I do have some osteo arthritis and have had a knee replacement and fused wrist. I've been told that this is a contributing factor to the pain, but also it is as a consequence of not moving when I am asleep, then my joints seem to set rigid. I often need my wife to give me a push to get out of bed, which she seems too willing to do! I did get bad cramps but the ropierole helps with that. I've set myself a target of achieving the British Masters Qualifying total for my age and weight and see where I go from there.
What meds are you taking for your PD. Some PD meds can make you stiff while you sleep. When I was taking gabapentin when i woke up from any length sleep from 5 min to 6 hours i would be unable o move any muscle i could only talk or yell at my wife for help. she would just move my leg or arm and then i could get up. One time i laid ion the bed for 30 min before i got going. Lyrica did the same thing.
Madopar 100mg/25mg (Levadopa + Benserazide) 10 x daily. 2 at 7am then 1 evry 2 hours with 2 at 9pm. I also take 2 8mg Ropinerole per day.
Wow. That’s awesome about CrossFit. It’s a good reminder to work on muscles. I had actually kind of given up on the muscular stuff, I think because it was painful and I fell arthritic, but you just reminded me that probably was lack of dopamine. You’ve inspired me to try again thank you!
I am 66 and have had Pd for 14 years.
I see you have asked about sleep aids. I tried every thing that i could find without a prescription and some worked a little but nothing i found did a good job. I have taken several prescription most made sleepy and i would fall asleep quickly but i would wake up a hour later and could not fall back asleep. The prescription sleeps aids would make me so drowsy in the morning i could not get out of bed.
So I just get what sleep i can at night and i nap a couple of hours every day.
i get up at 4 am take my meds and lay around in the bed or just go out into my shop until my meds kick in and then i find something to keep me busy till my wife calls me to eat around 6:30 am. I spend the rest of the day working on or cars or repairing what ever needs my attention that day. I live on my son's land just 22ft from his garage door. Between us we have 9 cars and trucks a four wheeler 1 motorcycle a 2 seat side side 4 wheel drive dump bed a 6ft cut zero turn lawn mover. I mow and trim the 3 acres we live on. My son helps a little when i need him but most of the time i do everything by myself.
I just finished our barndominium in January of 2019 and we moved in on my birthday 01/16/2019.
It took about 3 months from start to finish. When the contractor
finished the metal building i took over and built the living area inside.
My wife and i live in about 1100 sq ft (102 sq meters) my shop is
1900 sq ft (176.5 sq meters) and the man cave upstairs
is 1300 sq ft (121 sq meters) with 700 sq ft (65 sq meters) of
storage.
Sounds like you keep yourself busy Bailey. Funnily enough my wife and I have just been discussing doing just what you have described, having an hours rest/ sleep in the day. As well as my powerlifting I enjoy gardening and bulit a pond this last summer. I have said if I have another craving for a project though perhaps I should just make a bird table!
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