I KEEP SEEING WHAT STAGE OF PARKINSON'S ARE AT ?

[export]

I NEVER BEEN TOLD AND WOULD LIKE TO KNOW ?

I HAVE ADVANCE PARKINSON'S , I WAS TOLD AT AGE OF 32 I WOULD BE IN A WHEELCHAIR WITH IN 5 YEARS. I AM NOW 51 AND STILL WALKING.I GO OFF ABOUT 5 TIMES A DAY.

WHAT STAGE AM I ?

yours EXPORT.

[alllowercase]

I think that, like me, you are at the Rebellious stage. And don't we enjoy proving the statistics wrong?

[Jocee in reply to alllowercase]

GREAT answer!

[Bitbit in reply to alllowercase]

Yes!

[debbie66]

It is advanced Parkinsons,you have the DBS so that has helped hold back some of the symptoms.My husband was curious a while ago and we switched the DBS off ,after a few hours he couldn't do most things,so he would be in a wheelchair if he had not had the DBS.He is also advanced Parkinsons.

It;s true ,rebellion helps,my husband still manages to go for a walk and he cycles in the house on his exercise bike,he just tries to keep fit as best he can.

Debra

[export]

THANK YOU BUT THAT,S ANOTHER NEW ONE ON ME "THE REBELLIOUS- STAGE"

I HAVE ALWAYS BEEN A REBEL .ITS WHAT KEEP ME ALIVE ..........

yours EXPORT

[Hidden]

I'd find another doctor! That's unacceptable treatment! So negative! Find a Neuro that will encourage you and fill you with hope and positive thinking!

Blessings,

Carol

[Pete-1 in reply to Hidden]

But with a degree of reality. Otherwise when reality fails to live up to your over optimistic expectations, you will be even more disheartened than you would otherwise have been.

A happy medium is required.

I prefer a large degree of enthusiastic interest in some project / objective / cause that can move you focus away from self pity and motivate activity rather than a depressed torpor.

[judam9 in reply to Hidden]

i agree with you Racing Chaplain,

keeping a positive note on parkinsons, is the best prescription you can have.

thanks,

[judam9 in reply to judam9]

my doctor told me i have a very light case of it. instead of sounding like doomsday.

[larry33b]

Was that doctor licensed?

[judam9 in reply to larry33b]

yes he is licensed. kind of like being a little bit pregnant. a light case.

guess they just don't want to tell you what;s really going on. or maybe he doesn't understand parkinson's either. i'm not sure my neurologist knows a lot about it either. somebody should know something. until i got onto this site , i didn't know a heck of a lot. either.

[export]

NICE ONE .

[Hidden]

I rarely take much notice of what Doctors say.

I do as I feel best, and what is comfortable to me.

If a doctor said to me I'd be in a Wheelchair in five years I tell him he may very well be in one much earlier.

And who would be to know. illness is quite unpredictable, don't care how good a Doctor is.

[Jocee in reply to Hidden]

You are so right!

[judam9 in reply to Hidden]

i like that answer. thanks oldtyke.

[export]

oldtyke I keep smiling to my self as I think about your very witty remake . if you were working you would need to have been dead a week to get a sick note out of him. if you are paying for a private sick note not a problem......

yours EXPORT.

[grammieof3]

I looked at the stages and I'm in several so to hell with it i say

[Yogibear]

The stages are a load of rubbish anyways if you look at how they are rated. Everyone is different! I too am a mishmash of different stages. I am all for Rebellion! I am in Warrior Mode!

[bawford]

I was just at a PD conference in Cincinnati, OH in Nov and this was a discussion of one of the presenters. Basically he said, we are all different. If a doctor has you in stages, he is not treating the 'person'. No two people are alike with PD. My PD doctor told me at one of our first visits. 'You may never get any worse than you are today." I say this everyday to myself. Stages are for chicken pox. YOU ARE UNIQUE, and we love ya that way.

I agee with Racing Champlin.

[export]

AM I RITE IN THINKING THAT THE STAGES HAVE NAME AS WELL AS NUMBERS ?

I THINK I WILL PUT THE STAGES TO BED ......

I WOULD LIKE TO THANK-YOU ONE AND ALL..

yours EXPORT.

[Sandra65]

Hi export we both go to Walton Neuro, who is your dr?. Mine is Dr Stieger i think he is wonderful. He is always very honest with me and also listens to everything that i say to him. xxx

[export]

Sandra65

I was seeing Dr N Fletcher for years .He was good to me until out of the blue he stop all my Madopar 125mg and gave me four 62.5 .I fall out with him .when he said I had Dopamine Dysregulation syndrome

Now i see Dr Sundus Alusi she is lovely but no fool plus she is interested in me...

Sandra if you want to know more message me ......

yours EXPORT/JOHN=XXX

[Sandra65]

Thanks Export i know of youre old dr ive been told by some people that he can be a little to much abrupt. Im glad that you like youure new dr because that is half the battle. Take care Export sincerely Sandra xxx

[export]

Ssndra if you already made up your mined ?

[export]

Sandra what do you mean ?

[pdmcc]

I have advanced parkinsons, and my neuro said that i will most loikely end up in a wheel chair, I have problems walking, legs shake bad, no feeling in my feet anymore, But I'll tell you what, I will not go in a wheel chair, no matter what it takes. I'll keep using the cane to keep from falling. I exercise my legs to try and keep the muscles toned daily, 5-10 miles on the stationary bike, stretching exercises. Some days are good, some days just plain suck, but wheel chair is not in my vocabulary.

[Jash in reply to pdmcc]

That's the spirit! Keep going-- no matter what!

[FifteenyearsPD]

the stage you are in is very dependent on your state of mind - some days are good and some days are not so good... only kind I have

[export]

Hi well in that case the stages are pointless . I thank you all .EXPORT.

[Tink52]

My Parkinson's has advanced quickly. I was diagnosed July 2008.age 55. Stress has been a big reason for this. I must use a walker to get around and no longer drive. Loss of independance is hard to accept. I live alone but probably shouldnt

[Erniediaz1018 in reply to Tink52]

I hope you're looking into B1

[1rocketman]

Congratulations on beating the odds! My husband was diagnosed 2 years ago. In the beginning, it was an awful bumpy road, but the more I educated myself (he didn't want to know anything because he thought his life was over), the more I realized that attitude was just as important as exercise and medicine.

The turning point for him was after I rebelled after hearing his daily complaints one too many times. Besides his medication, we'd gone to all kinds of physical therapies, did yoga, we'd exercise together so I could keep him motivated, etc., but he would never follow through with any of it unless I pushed him. I was getting discouraged reading up on the stages of Parkinson's and what we had to look forward to, plus I just retired, so I felt like the retired life we envisioned was going away and I saw my life as care taker to someone with little motivation to help himself. Psychologically, he already felt defeated, he couldn't sleep, he shuffled around the house with that sad Parkinson's masked face.

Fortunately for him, I am much more determined and assertive in my approach to things (though for a year, I tried being the understanding supportive wife). Finally in a moment of exasperation after he complained about his symptoms, still ignoring all his therapies, I told him, "I know you didn't ask for this, but I didn't ask for this either. If you give up, I give up too because I'm not going to sit around and watch you feel sorry for yourself and deteriorate. When you get serious about following through on your therapies, let me know because I'm going back to work..." That was one year into his diagnosis, and boy did that little speech turn him around.

Fast forward to today, he boxes, golfs, runs, goes on daily walks and reads countless websites to stay educated. Though PD has slowed him down a bit, we've traveled frequently and have been able to enjoy our lives and not worry about what stage he is in and what Parkinson's has in store for us. I have my husband on the high dose thiamine (B1) regiment and daily mannitol in his beverages once or twice a day (in addition to his C/L meds.). He started the B1 about a month ago, and I honestly think it has helped him. He is having less off times, and when he does, he exercises. I feel like I have my husband back, he no longer shuffles and I haven't seen the PD mask in months.

Sorry for the long post, but all that to say, staying positive, besides the therapies have helped us get through PD tremendously. We stopped looking too far into what stage he is in and what the future holds for us -- it isn't promised to anyone anyway.

[Erniediaz1018]

B1 everyone!!!