You have Parkinson- come back to see me in 6 months

[cplusmc5255]

Oh;, and do you want medication. (With no knowledge of the disease and an aversion to taking meds unless absolutely necessary= I said no. When I called later to maybe get some meds the nurse said to just exercise. )He did tell me that mine should be the slow growing kind- whatever that means So I really appreciate all the information on this site. Thank you all.

[GymBag]

15 years ago , been there, done that hahhahahahaha. I am pretty sure they teach that one in Med school.

Upgrade any existing exercise program to the 1st class fanatic level , Start long term planning, keep that appointment, get lots of rest, loose and avoid stressful things in your life . Oh and be happy.

Welcome C+, you may ask any question you have but beware all the expensive herbs , coconut oils and magic mushrooms about to be suggested to you. Try not to dwell on "why me". A PD support group likely exists in your home town, learn about non-motor symptoms of PD: dry eyes, dry mouth , constipation, etc etc .

As I said try to be happy

[Cookie1124 in reply to GymBag]

DIAGNOSIS My neurologist told me to try sinemet . It worked so well. That, he said was a test of parkinsons. I had many "good years" with the help of meds" and although hated taking meds , they worked! If you want to take back your life this seems to be the cost. And the cost is not bad compared to other things.

[cplusmc5255 in reply to GymBag]

I appreciate your practical advice. Had not considered much about long term planning- I am an artist concentrating on printmaking- etchings, stone lithography, lino cuts...Will have to change my emphasis. Sorry- just thinking out loud. Know anyone who would like to buy a couple of presses?

[Boomercd in reply to cplusmc5255]

If it makes you happy keep the presses running!

[cplusmc5255 in reply to GymBag]

Thank you for the great advice and encouragement.

[GymBag in reply to cplusmc5255]

Most important keep those presses running.

It was not until after I was diagnosed that I took up oil painting. Very therapeutic. You will find other ways of doing things, and you will do more planning of how you are going to do it. It will take longer and you may need a bit of help on some tasks but you will find that grab bars, clamps, tables medium height shelves , walkers , those grab clamp extensions for picking up things, handrails , downsizing, goal moderating, exercise , medication, and attitude will be helpful. Tenacious , no whining, defiance will beat PD. Time to change, lots to do. No time to feel sorry for yourself or give up. You can do it. Compared to some other deceases PD is a walk in the park. Ok a slow shuffle in the park but your in the damn park , and that is the important part.

[cplusmc5255 in reply to GymBag]

THANK YOU! THANK YOU! i NEEDED YOUR PEP TALK AND WILL TAKE YOUR ADVICE.

[cplusmc5255 in reply to GymBag]

Appreciate the warnings.

[Bailey_Texas]

Hi and welcome cplusmc5255

1) Get a Good new Doctor.

2) Give me the name of that quack you went to so i can have his/her legs broke and then ask if he/her wants any casts or meds and tell Him/Her to come back in six months.

3) Take your meds as instructed and i hope they work for you and start exercising as much as you can.

4) If they don't (with your Doctor's help) try more or less or different ones

5) Don't give up till you get it right it may take a awhile It took me 9 years and well worth it.

6) Avoid stress it makes Parkinson's worse.

7) Enjoy your life do what makes you happy'

8) You are not alone reach out for help and use any resource you find.

Now for my first Dr. appointment

It was on a Friday morning. Told me i most likely had amyotrophic lateral sclerosis (LAS) and walked out no explanation no advice the nurse came in and sent us home. I went to a new Doctor on Monday and was told it was Parkinson's. Went home found a hit man and had a number 2 on the above list done. Not really but wanted to. Maybe someday i will do it myself. LOL.

It has now been 12 years and i am doing great. My symptoms are worse but well controlled with meds and exercise. I am 64.

Good luck

PS

Ask me anything about how Parkinson's and meds have affected me and i will be brutally honest and i do mean anything.

[Hidden in reply to Bailey_Texas]

Some doctors seem devoid of feelings, they give you life changing news, press a prescription in your hand and show you door. Perhaps they feel ‘powerless as they cannot cure us’ , and when they fail we do not die! We need time and an immediate appointment at diagnosis with someone well informed to explain this complex disease and treatments options and hope for the future with new treatments.

I thank ‘God’ for Michael Fox Foundation, Parkinson UK, Parkinson Life magazine. The internet is amazing when used for good, allowing us here to develop a community of support.

Informed specialists are talking of an impending pandemic of Parkinson cases in the next 20 years. This should focus governments minds to assisting (funding) those knowledgeable of the disease in finding better treatments and a cure. All in Society will benefit to do anything less is shortsighted.

[Beckey in reply to Hidden]

Amen, Lovepug!

Some people -- some, I say -- who specialize in neurology can be very aloof and above-it-all. The first neuro I saw about my tremor gave me the whole battery of tests, then told me I didn't have Parkinson's and prescribed neurontin. I asked him how he knew it wasn't Parkinson's and what is it, anyway! And the guy flew into a hissy fit, saying he has been practicing for 30 years and he knows what he's doing.

My current neuro (movement disorders specialist is very cheerful but she only works one day a week

[Hidden in reply to Beckey]

Hi Beckey

Getting a diagnosis is a real challenge! My GP adamantly told me I did not have Parkinson (her grandfather had had PD). The first neurologist I saw did an MRI, told me my brain was healthy and sent me packing. However, I knew something was wrong and I knew all along I had Parkinson weird (the first in my family/friends). The second neurologist I saw also thought I did not have Parkinson but he listened to my concerns and did a DATSCAN, which confirmed I had PD. I remember walking into his office, sitting down and he said “you are not going mad you do have PD”. Believe it or not I felt a real sense of relief.

Hopefully in the very near future they will be offered a definitive test.

Best wishes Lovepug

[GymBag in reply to Bailey_Texas]

They are not quacks. They are elite, over educated, medical doctors who were misinformed and belong to a professional society that has decided to agree on certain standards and truisms , that are wrong. For example , your neurologist will tell you that there is no pain associated with PD. No sense arguing with him/her, just go to your MD ask him for pain killers for your aching muscles and smile at the neuro. Besides they must be bored to tears.

[Hidden]

Hi

Where do you live? Here in the UK I have looked up the revised 2017 NICE guidelines for treatment Parkinson patients over 18, makes interesting reading. Many of the interventions for providers offering care, quote “you can consider”, so they can consider and do nothing.

We are meant to have medications explained to us before embarking on treatment, the benefits and pitfalls; I nearly fell off my chair and not due to my Parkinson. I was just given tablets and told to return in six months and no one explained the risks of poly pharmacy. Also if you think you might have a heart condition or skin issues speak up to your specialist as some of the drugs for PD might cause issues with other aspects of our health. It’s amazing what you discover on the internet in the wee hours when you cannot sleep. Be informed, do not be fobbed off. Lovepug

[cplusmc5255 in reply to Hidden]

So much to consider! I live in California...don't think they follow guidelines here. Thanks for the tips.

[rebtar in reply to cplusmc5255]

I'm in CA too -- northern, Bay Area. If you're around here, UCSF Movement Disorders clinic is a great place. I've had two docs there so far, and both were the kind of folks that it's a pleasure to spend time with, no arrogance, open minded, really smart.

YES on the exercise, you will feel so much better.

Check out posts on Mucuna Pruriens. My PD is early with mild symptoms and it helps enough, no side effects.

[Beckey in reply to rebtar]

How much do you take?

[cplusmc5255 in reply to rebtar]

Will check it out. Thank you.

[sunvox]

I'm one of those "coconut oil" guys mentioned above, but I urge you to take your time and do your own research. If you click on my ugly mug and look at my posts you can find links to an enormous amount of research that you may or may not find helpful.

First, though, I think everyone with PD should watch this video . . .

vimeo.com/191664871

and then this link is a post of mine which has a further link to a video that summarizes my view on what patients with diseases like PD and other neurological disorders can do to help themselves:

healthunlocked.com/ataxia-u...

and finally as a PwP you should keep your eye on this website as Simon is an outstanding source of news and scientific facts:

scienceofparkinsons.com/201...

Joe in NY

[cplusmc5255]

Can't thank you enough.. Will certainly check those sites out.

[Benidorm66]

Exactly one mine did. ,,!!

[JohnPepper]

Have you read my profile? If not, have a look at how I have been able to overcome many of my Pd symptoms.

[jt12]

Ok so I'm still a newbie here, being diagnosed in June but have had symptoms for 15 plus years. I work out at the gym at least 3 times a week, plus I run about a mile on the track, and I've been doing this since I got out of the military in 1992. I do believe that my exercising has helped to hold off the severity of this disease for me, but I truly believe that once you have damaged nerves and cells you can't get that back. I would love to just exercise and not be dependant on medication and to have the symptoms go away but I know thats not a reality.

Bless my daughter's heart because she has Type 1 Diabetes, and when I told her about my diagnosis, she said " mom, now you'll know what it's like to have a chronic illness."

[sunvox in reply to jt12]

Hi JT - I agree once neurons are damaged repair is unlikely, but I think the key is to do all you can to prevent further damage. Since PD has such a variable pathology the key lies in finding your own "best" treatment plan. If you haven't already I urge you to watch the two videos I linked above because it sounds like you are a perfect example of a patient that might be able to develop and benefit from a comprehensive treatment plan:

youtube.com/watch?time_cont...

vimeo.com/191664871

[M_rosew]

Your condition didn't change on the day it was given a name. You are probably suffering from shock, but there's no immediate rush to start medicating.

You now have six months to find out more about PD, prepare your questions and makes notes of your own particular problems (but don't research too far into the future for now). Find out about local PD groups, exercise facilities etc. Look at previous info on this site, and various on-line PD exercise programmes with tasters on YouTube.

Good luck.