Hi, I've just signed up here as I was diagnosed with PD just before Christmas. I'm 54 and fit & well. At least I thought I was...
I'd had an odd 'heavy' left leg and a slight facial tick when concentrating which began around January 2015. In the summer I started to develop a tremor in my left hand/arm which has worsened and I can no longer do repeated rapid movements with my left hand - such as drumming in time with my right hand!
I asked my consultant if there was anything I should be doing - reducing alcohol, changing diet etc and he said "Well, you look pretty fit and well so I'd just continue as you are".
I'm not yet on any medication although the consultant mentioned starting me on Rasagiline soon because he thinks it 'might' slow the progression. He said "there is a theoretical benefit that it may have some neuro-protective properties"
I've read some stuff online about detoxing but I don't know if that's just hokum and without any real substance.
Should I avoid vitamin B and carbs?
Should I take up smoking?!!
Start running miles every day?
Eat coconuts?
Anti-fungals?
Vast quantities of garlic?
3 hours of Qigong a day??
I'm aware that the medical establishment dismisses everything they haven't tested (yet)- and I understand why, but conversely their scepticism might preclude useful tips...
So what I'm wondering is: is their a consensus here about dietary steps (or other things) that I should embark upon? Maybe I can't reverse it but I'd love to slow it down.
This is all very new (and frightening) to me so I'd greatly appreciate the refined wisdom of the Hive!
Many thanks,
Marc
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Marcomando
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In short, nothing you can do. No cure, no stopping the progression. Meds only for treating symptoms. Do not start meds until you have studied the subject thoroughly,
Hello Marcomando and welcome to the club.
I am 62 and 10 years with PD. I have taken a variety of meds. If you do start meds please research them for possible side affects so you will be aware of what they are when and if you have any. They vary a lot.
On the subject of meds take what the DR. RX for you and pay great attention to how the help. Keep in touch with your DR. and keep a journal of how you react to them.
I am better today than 10 years ago.
I take meds and do CrossFit 5 or 6 times aweek.
The meds and CrossFit (i believe) have slowed are maybe stopped my PD from progressing. I live a life with no limits. You have plenty of good years ahead.
maybe you would be interested in this link above. It was my second post a while ago.
Most important, try not to worry, be happy but understand denial, start planning, you will need to retire early start planning now, Find the local PD support group and attend meetings. Read all the PD associations web sites. Take the medication prescribed but do not push the neurologist for larger doses. Exercise, EXERCISE, E X E R C I S E develop daily weekly strenuous push yourself exercise programs do not believe that you know your limits because you don't. Look after the non motor PD symptoms described in my post (see link) before they get to be a big deal.
The thing that i have learnt from pwp (people with parkinsons) is a positive attitude. There are so many encouraging, educational and inspirational posts on this site, i find it uplifting. I have become more at peace with my dx . I decided to do three things-
Attitude
Diet (nutritious/healthy)
Exercise
Give yourself permission to grieve if you need to. Being told you have pd is not easy.
Two things iI would recommend you do immediately are (1) LSVT BIG, this special PhysicalTherapy will likely provide very significant benefit down the road. And (2) get involved with ongoing Tai chi,, where you also would learn and practice Mindfulness.
Welcome! Yes exercise. Push yourself type exercise. Yes coconut oil, supplements like Bioactive Q10, probiotics, vit B, magnesium and zinc. But also include Inosine. This is currently on stage III trials to test whether it slows the progress of PD by raising urate levels. They have found the lower your urate levels the faster you degenerate. My level was 2.5mg/dL. Really low! I'm aiming for 6-8mg/dL. Results from research expected in about five years. Do I want to wait?! No!
Not that I was aware of, though it's really hard to tell which of everything I do is making things easier! I'm back on Inosine having rested it. If it only helps 2% then let it be one of the 50 things I do!! B2 is good too!
UUMMM you see it is going to get more difficult , a lot more actually. Not right away, but faster than you may be prepared for. Be optimistic but no rose colored glasses, and beware of denial, look ahead, start planning, You will probably need to retire at 60 . You will need accommodating living quarters in a location you will be happy in. What would be the situation if you had to stop driving. Can you start to simplify your life , minimize expenses and maximize savings.
The expectations of what your life will be like has changed and you need to understand how. No one can tell you what the rate of change will be except that the rate of change, changes. There is nothing wrong with your muscles, the problem is in your brain. Your state of mind effects the decease, stress makes it much much worse. You have been given the opportunity to prepare.
My opinion: I would continue to exercise to keep your limbs limber. It really helps me. If you do develop balance problems, try Tai Chi. You can see free sites on you- tube for tai chi, parkinson's exercises and more. Be yourself.
We have Parkinson's, but what works for me, may not work for you. I can honestly say, Exercise has really helped me. If the Tick gets worse, it may be a form of Dystonia ( talk with your neurologist movement specialist) I have dystonia of the feet and I receive Botox, and I can walk without a problem. Contact National Parkinson's Foundation- They have all kinds of reading materials for you to get free to read or read it on line.
It was quite scary when I was diagnosed and I have learned over the years, there are many caring people that have PD (parkinson's disease) try to think positive thoughts and fight off the negative. This is not the end of your life it is the beginning of a new journey. You will meet more friends, get involved in things and value life a little more.
God Bless.
I will never give in to Parkinson's, I will fight it through exercise, positive thinking to
chase those Parkinson's blues away. I had symptoms of Parkinson's in 1987 and I am a 66 year old wife, mother and grandmother that also meditates. Life is good!
Hi Marc, it looks like you've done some studying already.. Do what makes sense to you and what works for you. Only time will tell. My strategy was to change everything I ingested from the air to the water to food. Try ubiquinol for starters.. It helped me a lot in the early going five years ago. Keep drumming as I keep playing the guitar. We must keep on.
Ubiquinol - a form of CoQ10 - has been found to improve symptoms for some Parkinson's patients. Regarding ubiquinol, here is an article I found interesting and look for your feedback on ubiquinol vs ubiquinone:
"The importance of oxidized or reduced relates to CoQ10's contribution to the electron transport chain – part of the ATP cycle that our cells use to create energy. During the electron transport chain, the oxidized form of CoQ10 (ubiquinone) gathers electrons in the process and the reduced form of CoQ10 (ubiquinol) provides electrons." It looks like ubiquinol is preferred for PD
According to the Mayo website, In the neuroprotective category, two medications have reached Phase III, the "make or break" phase of drug testing. The two medications were both sponsored by the National Institutes of Health. One is Coenzyme Q10 (CoQ10), and the other is creatine. Both are substances that occur naturally in the body.
Not many neuro protectives make it to phase III so any info we can share on Coenzyme Q10 (CoQ10), and creatine would seem smart.
Marc, you are not alone. The initial fear of not knowing is experienced by almost everyone upon diagnosis. Here in Orange County, California, I teach a class to educate the newly diagnosed. Part of the class is a form that I developed of the PD Symptoms. It is the most complete and has many features to help both you, your care partner and your doctor. Send me an e-mail with 'Symptoms' in the subject area at the top and I will send back two different formats of the 'Symptoms List'. The back portion tells 'How to Use' the form to receive the best benefits.
My e-mail is: macbunch@Hotmail.com Note: This offer is open to anyone reading this reply.
I am truly sorry to hear that at 54 u have been diagnosed with PD. It truly does suck does it not? I to was diagnosed at a very young age, and have just joined this site. I'm certain that if you speak with the right people you will be happy to know that you need not walk alone! Just know that their are people out there that have NO idea what they are talking about! GOOD LUCK and GODSPEED!!
Marc, like you, I am new to this and I am wading through a plethora of complex info and appreciated your straightforward question. . . and some of the answers. The one area of agreement seems to be exercise and I have revised my notion of exercise which formerly centered on yoga and walking my dog, Honey Bunny. Now those are nice fluffy things I do after I work out hard for an hour first thing every morning with my husband (run / walk). I am contemplating now something we have in the states called "Orange Theory" which is some insanity workout that I am dreading that includes loud music, flashing lights, and a guy screaming something unintelligible into a microphone that always ends with "1, 2, 3". I don't know what it means when he screams this but my brother and husband made me promise to try Orange Theory for a month. Do you have this gym? It seems to stem around an interval training approach which includes cardio, resistance and strength training. Following some research in general and on PD exercise, interval training seems like a very good path and that's why I am going to brace myself and try it. I don't know if all the exercise is helping my PD but I definitely feel better and I am physically stronger. I now also wear a fitbit HR which is a tool I am addicted to as it breaks down good info and I highly recommend a fitbit for you that measures heart rate. Maybe you have one already by now. As I reflect on it, the number one change for me in the last few months (dxd about 6 mos ago) is exercise.
I wish I had real insight to share. It seems difficult to understand all the meds and supplements. I am always curious to hear how meds are affecting others. People have been generous with their time and insight.
Check out this website page:
pdf.org/en/parkinson_pipeline. Mayo seems to be doing some solid work but they do advocate beginning levadopa right away or C/L. I am starting with azilect and looking with interest at CoQ10, creatine or isradipine. I am also curious about Nilotinib if I can get into a trial for early stage. Of course, I am pretty confidant that I am overlooking critically important developments.
Glad to join the group and please keep posting! You are making me laugh!
Exercise, exercise, exercise. There are specific programmes for PD (e.g. PD Warrior from Australia, Rock Steady Boxing from USA), but I'd go with anything that suits you that maintains/increases your flexibility.
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LIVING INSIDE OUT
It's my health, my body...why is it that my opinion does not count? I am angry, frustrated and feeling helpless!
Does any know what I should do?
What part of I've got Parkinsons do you not understand????
