Hi friends,
i am in stage 2 of my disease and the question that keeps me up at night is..how many good years do i have?
i just had my first granddaughter and i want to see her grow and be able to do things with her.when do things start to get bad, will i be able to attend her kindergarten recital or is this not a reality
Not bad yet... 5 years and counting.
ty for the response! its a scary thing not knowing what to expect.its not like cancer where you get an end date! this group has been so helpful i love it here!
keep on truckin Royprop!
I pay very little attention to the hoopla surrounding all the things that supposedly will make us feel better. But the injection of dopaminergic stem cells into the part of our brain lacking dopamine did get my attention. I hope that pans out for all of our sakes in the not-too-distant future. Perhaps somebody more knowledgeable on the subject than me could talk about it.
Can you tell me more about the injection of dopaminergic stem cells? Thanks
The birth of grandchildren does tend to make us consider our own mortality. But none of us can see into the future, thank goodness. People can be struck down in a moment.
With PD it seems wise to look after your health, excercise, and hope for the best - while also making provision for the worst.
Enjoy your time with this little girl. She'll be pleased to dance for you at home if you can't visit her school.
What a wonderful response, M_rosew! "She'll be pleased to dance for you at home if you can't visit her school." This is so true. <3
11 years and counting
I can still run a mile and my oldest grand baby will graduate Texas A&M next year.
awesome congrats! ty for the uplifting comment
Bailey, you really are an inspiration. I think you are demonstrating the very positive effect of exercise on PD.
Worrying takes all the fun out of life NOW, as well as making my symptoms worse. I know how hard it is not to let anxiety take over, especially after seeing my Dad's decline with Parkinson's, and then being diagnosed. There's no way to predict outcomes, even if you're doing your exercise, eating healthy, etc. My commitment to myself right now is to beat the anxiety so that I can live whatever time I have left as fully as possible. And do everything I can to stay healthy, with as little desperation as possible!
My dad had PD too and when I was first diagnosed I was so anxious and depressed I was almost suicidal.All that went as soon as I started Mirapexin and I've been almost 'normal 'since.
CBD helps too.
tell me about CBD there are a ton of people selling it but i am Leary of buying because you dont know what your getting... do you use it
Check out the offerings of charlottes web in Colorado. These are non psychogenic. If you can get the cannabadiols with thc legally you can add to it. It helps with anxiety and tremoes
Excellent advice Rebtar,
Exercise regularly, take well balanced medication and take an optimistic outlook and your prospects for many good years are much improved. Love your grandchildren now, make the most of every day and dont fear the future and you will do well.
Yes, Yes.
Robyn, we are all different, and noone can predict what will happen in life! My wife and I always supposed I would die first, me having PD and being nine years her senior a large factor in that, but two years ago she died from metastatic cancer of the uterus, at only 37 years old...
I have had PD some 22 years now, but with careful planning of breakfast and meds, I train CrossFit three times a week! I use slightly lighter weights (I'm 48 after all, I leave the 250lbs deadlifts for the young ones) and always find a spot in the gym where I can catch my balance, but my neuro was quietly amazed at my physique last time we met. 
So live life while you have it! Take care of yourself and your dear ones.
/John
ty John!
I am only one person out here with Pd. M experience is very unusual, but so is what I have been doing all these years to be able to live as I do, which has been medication-free for the past 15 years.
Many doctors are now telling their patients to do exercise, but are they telling them to do the right exercise? What is the right exercise?
My Pd was first diagnosed in 1992 at which stage I had been going to the gym for one hour every day, six days of the week. I did work on the treadmill, bicycle, step-climbing, rowing and various machines. I then decided to increase the gym to 90 minutes per day, but my symptoms got worse much quicker. After two years of going every day for 90 minutes I stopped! I had been seeing the number of weights on the various machines and the settings o other machines getting smaller and smaller, at a much faster rate than they had, before diagnosis. Why do all that work, wen my Pd symptoms are getting worse much quicker?
My late wife had been doing fast walking for over 2 and a half years, at that point, and she had lost 14 kilograms in weight and had come off her blood pressure and anti-depressant pills as well and she was convinced that it would help me as well. But I was already doing walking, step climbing, biking and all sorts of other tings for 9 hours a week, so why would fast walking for only 3 hours a week help me? Being a man, the logic of that told me that it would not work but she kept on nagging me and after 3 months I joined her fast walking group, just to prove to her that it would not work.
Guess what? It did work. After 4 years of fast walking for only one hour, 3 times a week, my symptoms had got so much better and after 8 years I came right off my Pd medication and have not been back on ever since.
Look at my profile and read more about it. I don't charge anybody fr helping them, but they have to do the hard work.
I'm in my 8th year, 66 yrs young. I've noticed a decline in the last year. Every one of us with this terrible disease are fighters. Eat healthy, stay active, keep up with Drs appts and stay on your meds. If something's not working tell you Dr. There are many meds out there. It often takes several months to find the right med and dosing schedule.
There is so much research and tons of trials going on world wide. I remain very hopeful, that with all this intensity, a cure is coming soon. There's just too many really brilliant and dedicated individuals involved to think otherwise.
All I want to do is get down on the floor and wrestle with my grandchildren. I'll never give up, but I do realize some days are harder than others. Stay in touch with your support groups. Stay active and keep moving!
Very valuable advice Isthistheone.
RobynS
How do you feel, in this moment?
That's all you need to be.... in this moment
MJF said it great .... ( better than I'm able to put it)....
you can worry about something , it may happen : now you've just lived it twice
Or it may not happen & you've wasted time worrying
Trust me, I'm not a positive Pollyanna but that comment from him struck a cord.
Be well RobynS & enjoy the moments!
Exercise helps. People are right in saying one's longevity is highly variable from one individual to another. One factor is how old you were when you were diagnosed. You'll meet "young onset PwP's" (under 55) that have had Parkinsons for a couple of decades and are corking along quite well. Older onset its more like 5-8 years. Another way of asertaining is what "subtype" of PD you have. That can be discerned by the primary manifestation of symptoms. One type is "Tremor at Rest" which is as it says. The other type is PIGD or "posture instability gate disorder". The former group live longer than the latter group.
The best attitude to develop toward advance of the disease is to take care of yourself, exercise and focus on keeping as active as possible. You need to recognize that having PD is like being a pilot. People without PD throw on the "automatic pilot" switch and the body runs itself... they walk from point A to B without thinking... when they talk they don't focus on how loudly they are speaking, they never bother to look for handrails on stairs, they just are oblivious. PwP's are bush pilots. . . they need to be vigilant, keep their hands on the controls and stay on top of things. Practice their landings. Do "touch and goes" (land where their wheels touch the ground and then gun it and take off again). My flight instructor used to call them "crashes and dashes." I like the "pilot analogy" as it focuses on taking charge of the situation which is so much a factor in managing Parkinsons well.
An interesting analogy. I am often in awe of people who can move around on autopilot. But we bush pilots can fly too.
That's so true.
After reading all the responses to your post RobynS I want to thank you for raising the issue which all of us with the disease think about regularly, but don't always deal with very effectively. Every one of those posts were great supportive answers to all our issues in dealing with the long term effects of the disease. I hope it helped you in providing some comfort. I know the collective answers were very helpful and encouraging for me. Thanks to all who responded to your post.
Like you I worried about this. Recently met with neuro who described this as a decades long process for most folks. Use your energy to stay positive and do the things that work. Walk, relax, eat well. Sending good energy your way. Enjoy your family!
ty islandhappy!
My grandchildren are middle aged!!!!ha!
The best answer is; you could have 20 years.
" ... In addition, studies have shown that Parkinson's has no real impact on life expectancy and those in study groups live to the same age as those without the disease. In fact, most people can live up to twenty years after their diagnosis." Apr 23, 2015
That is encouraging. Of course the issue of concern is not so much how many years, but how many years with quality of life. At least as so many have pointed out in their responses, there is much we can do to promote our quality of life but that is largely up to us.
I'm68 diagnosed a year after aortic valve replacement 6 years ago but
I'm better now than a couple of years ago.
Spent a week at the European Parkinsons Therapy centre in Italy where I learnt that PD is living with me not me living with PD.
I try to be mindful as often as I can. I dont dwell on the past ,on what I used to do, or the future ,on what I might not be able to do.
Life is not a dress rehersal.we have to live every moment as if it's the last ,don't put off till tomorrow what you can do today. Live in the moment, enjoy living in the moment.
You won't die from PD you will die with it , but you might get cancer and die from that.Dont worry, be happy and take each day as it comes.
Lots of exercise,good company, good food and above all be positive !
CBD helps
Ps I forgot to mention the best wife I could have.!
Good question. I'd like to know what is stage 2 and what are the stages? My guess is it all depends on you. Do you exercise and are you careful with how much Levadopa you take?. Also can you decrease your stress? Do you take anything to slow progress?
i only take sinemet which i just started i take 1/2 pill 3x day by next week i am supposed to be taking 3 whole tabs a day. low stress just starting to exercise now because i just got dx. why do i need to watch my dosages? what do you take to slow progress.
If you want to be sure you'll live 20 years, learn to be a defensive driver
HOW many good years? Well, 2008 was a good year. 2009 - 2011 those were bad years. 2012 - 2013 and half of 2014 back to good years. 2014 summer to 2015 sucked. 2016 to present not to bad. So as you see it is not how many good years, it is a matter of finding something to take care of what ever is ailing you at the moment.
When I have a difficult day I am tempted to be discouraged, thinking I am on that much feared decline. But I was encouraged recently when I learned the pattern of PD symptoms is not necessarily linear, but more like being on a bumpy road. If I remind myself that I've just hit a bumpy road it relieves my anxiety which we all need to live without.
I just saw this post. I just turned 60 & was diagnosed 14 yrs ago & still doing pretty good. Exercise, nutrition, low stress, & a positive attitude help a lot & should give you many more years. You've accepted you're diagnosis so that's a big part of it also. Keep fighting!
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