I am new to this PD thing....would help m... - Cure Parkinson's
I am new to this PD thing....would help me to hear success at living stories, specific examples.....please how u enjoy life, contribute
PD is not a death notice Change and adapt! accept this and do not go quietly into the night, Exercise is a big thing.
PD will try to tell your body to react one way but YOU tell it how you want it to go. Live life to it's fullest and enjoy every moment of it
I agree with the previous statement - for me exercise is critical. I run and race walk and still compete in 5 and 10k races. It isn't easy to get started, but once I get going I feel pretty good (for me) while running and they tell me that aerobic exercise is the best thing for PD. I have had trouble accepting what a friend calls for him 'the new normal', but that is actually a good way to look at it. A sense of humor about it helps as well. It can be difficult accepting that I cannot do certain things (like using sharp pointed objects), but it does help me
to look at what I can do and go with those thing.
I agree with the previous statement - for me exercise is critical. I run and race walk and still compete in 5 and 10k races. It isn't easy to get started, but once I get going I feel pretty good (for me) while running and they tell me that aerobic exercise is the best thing for PD. I have had trouble accepting what a friend calls for him 'the new normal', but that is actually a good way to look at it. A sense of humor about it helps as well. It can be difficult accepting that I cannot do certain things (like using sharp pointed objects), but it does help me
to look at what I can do and go with those thing.
Hi powerfemale
At the start I found it useful to read everything I could get my hands on, just to begin to understand the condition. There are a huge range of motor/non-motor symptoms but we don't all get all or even most of them... its a curious disease in that respect. So from "Parkinson's for Dummies" to Michael Fox's first book through a wide range of books in between, topped up with internet browsing, I got stuck in to enlightening myself!
I would suggest that, unless you are already battling with severe symptoms, right now just continue on with your life as if you hadn't been given any disease label BUT at the same time, read, enlighten yourself and become your own expert - don't be down-hearted if you discover that most medical people know little more than the basics about PD/parkinsonism, it is one among so many complex conditions they see. Make sure your neurologist is a parkinson's expert, if possible, but even if they aren't, make sure you can work with whoever you see.
Your job, as I see it, is to keep yourself as fit, as energetic, as rested, as entertained as possible and as symptoms encroach, adapt and modify how you do things and, if medication is prescribed, then take it and monitor how it helps. These days, thanks to amazing advances in medication and the understanding of the condition, with the right drugs, physio, speech therapy and your own motivation, life expectancy is pretty much as it would have been without the diagnosis. Obviously there are some odd variants of the condition and the disease does progress differently in each of us, but you are still the "you" that you were before the neuro pronounced the diagnosis... what's changed? If he'd said "we're not sure and would like to see you again in 3m" how would you be living differently.
I just think it is important to regard PD/parkinson's as just one of those things that can/may interfere with how we live our lives but it isn't our life! Unfortunately, at the beginning it really does seem as if everyone casts a long shadow over you and it really is only as you reach the annual milestones that you look back and realise that such gloom was a load of hogwash! If the diagnosis is correct, then yes you will see changes in the way you are but that's true with just living and getting older anyway.
It is also important NOT to let that sector of society who seem to delight in other's illnesses to bug you - you know the people I mean, the head-tilting "how ARE you" fake sympathy voiced ones, and those who can't wait to tell you about their aunt or grandfather or whoever who just "died of parkinson's". In the early days of my diagnosis I still had a dog and walked regularly in a local park - one particular dog-walker fell into this category (her dog happened to like mine a lot and always made a beeline for him) and after about the third chapter of dire consequences, I simply asked her why she thought that I, with a recent diagnosis, would want to hear of the demise(s) of her relatives. She hadn't been a friend, as such, so when she reacted crossly and stopped talking to me (her dog still loved mine, though!) it was no great loss. My point with this is, I suppose, don't let other folks bring you down. If you find among your group of friends/acquaintances those who are, for whatever motive, making you feel fed-up ... just gently spend less time with them. Surround yourself by all that is positive, upbeat and energetic and good for you.
The Cure Parkinson's Trust is a great charity with its research focus but I would also recommend joining Parkinson's UK (or visiting their website at least) as they focus on day to day living and have downloadable leaflets and really useful information for daily living if/as/when things begin to change for you. The two charities, in my life, complement each other in a synergistic way, it seems.
Does any of this that help or make sense?
Great Advice!
Thank u very helpful. R u glad to have started meds. Some days I feel I don't needs and think I should delay starting other days think I shouldn't delay starting. Your experience? Appreciation thanks.
I'm no expert, but I write a blog about my life,and how it has effected me. I try to be upbeat. Come by and see, I'm at:
Exercise, especially anything challenging, Journaling, PD is no picnic., you probably know that already. but I manage the tough times as best as I can, skating through them. Nobody can help you really, the people here are great for info and support. Love yourself, coddle yourself, get a pet, dogs love you unconditionally. good luck here is my brand new blog!
Well, Powerfemale,
What a fantastic response from Brockie.
I am in my early seventies, was diagnosed 4 years ago and I do agree with most of what he said. He is obviously a very strong alpha person with a wonderfully independent nature. Sadly all Parkies are not cast in that enviable mould. Some of us are softer, less robust, perhaps more vulnerable and not quite so in charge [ but rather cute, none the less.] If he allowed himself to admit to it, I fancy Brockie would confess to having times when he is a bit crumbly, too.
Brockie makes some good points, but they can be questioned, a little.
Firstly, I personally I would be wary of extensive reading about your recently recognized condition. As he says, there seem to be a huge variety of symptoms to be suffered and having just been diagnosed, PowerFemale, going mad and reading everything to hand will not put you in the most optimistic frame of mind. Again, as Brockie says, thank God, we do not get all of them. Our sweet Lord gives us all just a generous sprinkling; so as to play with us, as if saying, “Get on with that then. We’ll see what you are made of !” As the sausage said of the fork, “These things come to try us!”
Unless you really are a circumspect sort of person, it is best I feel, not to go reading the worst scenarios when none of them may ever be in your bag. Opt for optimism, I say. Getting old with any chronic condition is difficult enough without imagining the Sword of Damocles swinging overhead, when it really isn’t there.
If asked for advice, I would say to you, dear PowerWoman, be very selective who you tell about your new diagnosis. I was foolish and stupidly and personally told almost everyone. What was my motive for THAT, I wonder? In honesty; probably looking for the sympathy I felt I deserved. Mistake!
I had some reactions that floored me; some people when told, physically stepped back. For the first time in my life I imagine I knew how it felt to be a severely disabled or disfigured person; “ Don’t get too close, I don’t want to catch THAT.”
Then the other side of the coin, the bit that got up Brockie’s nose; the equally unwelcome patronizing ‘Dogwoman from Hell,’ approach. They are doing their best, and although inept are hoping that what they have to say will be interpreted as genuine sympathy. These offerings are best received as intended and smiled off.
Unhappily, there were the people who didn’t know what to say; nice people and my diagnosis caused them embarrassment it seems. I got a really odd, mix of reactions, serves me right, I just should not have been telling people; it was my families business and NOT theirs; why dump it on them.
I bumped into one of these people, for the first time in ages in a supermarket recently He said, in a matter of fact way, “ How’s the Multiple Sclerosis going?” I answered, “Fine! Hardly know I have it!” [You asked for living stories, PowerWoman]
Within days of diagnosis, I wished that I had told only my family and closest friends then sworn them to secrecy. There is no reason mere acquaintances should know or have access to my health file.
Although I don’t doubt that the matter is discussed by acquaintances, behind my back, I have not mentioned it people outside of my sweet and loving family for a long, long time. WE are blessed, the drug régimes available these days, although not without fault are amazingly therapeutic. I imagine myself with PD fifty or one hundred years ago and shudder.
PowerWoman, in the whole history of Mankind you, Brockie and I have chosen the best possible time to be diagnosed with Parkinson’s Disease. Here is to the future and indeed, God bless us all!
Thank u very helpful. I am sort not to take any pills and now have prospect of starting 'mild' med. Some days r good and I think I don't need it, some not..and think I do. I know we r all different r u glad u started meds?
I am currently not taking medication, diagnosed 3yrs ago, possibly had symptoms for 7/8 yrs.
How come no medication.? Can u tell me more? Thanks
I do take supplements, such as vitamin B, evening primrose, CoQ10, fish oil, all of which I but over the counter, I also use a treadmill & try to do 2miles daily in 32 mins, don't always do it daily, down to laziness. At the moment I am managing to have a normal life with the above so I have chosen not to go onto medication.
What information sources led you to take these supplements? What's your view on Pd meds 'holding the progression'? Thanks
I met a random nurse who said be careful taking the prescribed medication, so I started to ask consultants if there is confirmed evidence that the meds slow the progression of PD & each one of 4 said no there wasn't, however they do manage people's symptoms to make it easier to enjoy their life. I guess if I couldn't manage my symptoms I would consider taking the meds. Who knows what the future holds?
I had an almost instant response to the meds. I remember sitting down looking at that first Sinemet table and with a sense of "here we go" taking it and.. wondering if I would notice a difference. It was brilliant... within 45mins or so the pain in my arm and leg muscles just leached away... it was as if a huge almost-physical weight had been lifted from me and for the first time in the six months since my condition was triggered (by general anaesthetic.. a v rare situation apparently)... I felt like the "before me" again. I can remember my dog looking at me as if I were an idiot as I went from shuffling to normal and war-whooped around my sitting room. For me this amazing effect began to wear off after about 10 days but...we are all different. Yesterday I also posted in answer to a question about why folks don't take their meds (non-compliance) and I think part of it is because parkinson's drugs can make you feel horribly nauseous. My neuro dude prescribed me a suitable-for-people-with-parkinson's anti-emetic at the same time as my first Sinemet (and has done the same each time I have switched drugs) and told me to take them, irrespective of how I felt, for six weeks. By the time I stopped this anti-sickness pill my system had acclimatised to Sinemet.
So yes.. for me, I am glad I started.
REMEMBER it is not a one-way street, you can change drugs if you find one(s) don't suit you and your neurologist may be OK for you to try completely coming off them but this MUST only be done under medical/appropriate supervision as you will have undoubtedly read of the dangers of stopping parkinson's drugs once on them.
It is your choice and you have to be happy about taking the drugs otherwise you won't benefit. They work like topping up a tank so you do need to be consistent about taking them to ensure your brain is getting the dopamine it needs!
I am at the point where I am on a three-drugs-in-one tablet and have permission to take them pretty much as suits me (subject to the maximum daily dosage of course) but this is something that has come as a result of my being, like you, someone who instinctively prefers not to be taking drugs and hadn't routinely taken any prior to parkinson's rocking on up.
Another long reply ... hope it helps anyway. Guess I am in a wordy mood at the mo! 
Thanks again very helpful.
Sorry for not coming in sooner but glad I didn' as when I read through the replies what a fantastic bunch pwp's are there is not much I can add except to say do something you enjoy doing I play guitar and sing a nd last weeked I was out with friends in the town square busking to raise cash for a childrns hospice - sunday I paid for the fun but I knew I would - change and adapt manage yourtime so if there is something you really want to do plan for a couple of easy days beforehand and don't be suprised if there are off days to follow - PD is a sneaky condition but we can also be sneaky
If you are still working becareful who you tell at least initially Don' apologise for it you didn't ask for it but if asked don't be afraid to explain I feel part of our response to PD Iis to raise awareness of people - and you will be surprised how few peope have any idea othere than pwp's shake and tremble but 15% of pwps never do - I don't at present ' this can have some advatages when dealing with patronising dog owners and others
And don' forget that through this website you have contact with a lot of peopl wprldwide who really do understand -because they are all on the same journey -somethibg I have only just learned
excellent question. My best answer would be to ignore it the best you can. Treat it as an inconvenience and not an illness. Understand that there's no upside to PD, but you will have better days. When in a store and you must ask a clerk a question and you feel intimidated, say to yourself "Eff him, I have a life to live, and what he thinks has nothing to do with me, besides I do need that toilet paper."
I have deliberately not read any replies you have recieved so far. So the following is my view only. I think that pd can be all consuming, if you let it. I had information all over the house. Where ever I went there it was again. Top tip number 1.. put everything in a drawer. Open the draw and you let it out. Close the door and pd is contained. Top tip number 2... when I go in my workshop, pd is not allowed in. Shut the door and leave it out in the cold and rain.you are the same person now as you were before diagnosis. Don't worry if you have to make adjustment. I had to learn how to bushmy teeth with my left hand... at the time this was tbe end of the world. Now I think, who cares. Need to get off this train im on. Mkre to follow
I' have ahabit of refering to "my friend" inverted commas are important - "Mr Parkinson" excep he's no friend at all in fact he's not nice at all - as we all well know - a bit like the invisible friend some of us had as children - it helps me when I am planning something I like or want to doit may seem odd but it works for me
Laugh..have fun, do chi kung, only hang around with positive people, concentrate on getting better naturally,do something caring, see friends and family.plan treats...smile in the mirror everyday and thank God for everything.
Thanks lovely. What natural treatments have u used?
Howard shifkes recipe for recovery from parkinsons im followinggoogle fighting parkinsons drug free. There are otherss who have reecovered who offer help...bianca mollle, and john coleman.. Theres several books written on natural recovery..
All the answers are fine. I have Parkinson ism, I think.. I have no tremors except my teeth. But, I can't walk any great distance. It's all balance and getting frozen in one place when standing. I cannot write. I can't drive anymore, not for physical reasons, but I can't remember how to get places. Every thing is new every time I go out. I think my mind is going too, especially my short term memory. It's hard to concentrate. But I sleep well most of the time. Have a little problem with bowels and bladder. Just have to go when I feel the urge, twice a day, usually. I wear Depends at night as I have had a few accidents. I don't know what more to say. I'm 82 years old, and have had PD for, maybe 5 years. I wish some of you have the same problems that I have. I take only 3 sinemet a day. Doctor says there's nothing to take for balance. I go to exercise cl ass twice a week - a class ed for Parkinson's patients.Seems to help
Never think or say WHY ME? get out and about every day
Take medication ON TIME that is a must!!
Take NO notice of any false hearsays such as Oh I know someone who has that
No PD patients has it the same so there are no comparisons to listen to
Give parkinsons UK They will give the very best advice
God bless you
