Hi Ana,
Welcome! I'd love to talk to you. I'm 53, diagnosed and diagnosed five years ago.
L

Oops. I didn't mean to repeat myself. I'm in a hurry because my dinner needs to come out of the oven. Talk to you soon.
L

Hey guys... my name is Rick, I was diagnosed with PD about 3 years ago and I'm 53. I was miss-diagnosed for about 7 years, so I was about 43 when I started showing symptoms. I have felt that I was the only one out there that had this stupid shaky thing. I try and show humor with it or it gets negative fast. Look forward to chatting.

Hi Rick,
I'm glad you responded. Although it's a fairly common disease overall, I have found it difficult to find others in my age group dealing with it. My mother-in-law's partner was diagnosed recently as was an uncle (through marriage), but both are in their 70s and their experience is nothing like mine. In other words, I understand your feeling of isolation.
I was diagnosed five years ago after five years of doctor visits, so that puts me at 43 also when I first started showing symptoms. The first visit to the doctor resulted in being told to do ankle circles to strengthen my muscles. The doctor's explanation for my gait disturbance was weak ankles! Even I knew better than that!
My coping mechanism is ignorance. If I pretend it isn't there, it'll go away, right? It doesn't work all the time for obvious reasons. I work with kids so the worst for me is when a 5 year-old asks why my arm is shaking and I can't offer an explanation that they can understand. Of course they've moved on to something else in 2.5 seconds, but the question brings me back to my reality. Another "bad" situation is when I am nervous or upset. My arm starts up like nobody's business and gives me away. I can't hide anything. Not that I have much to hide. :)

I recently made some big changes in my life and now trying to deal with what I have done.

I too was told some weird stuff by some well known neurologists here in Utah. I am from SoCal but found my self living just out side of Salt Lake City. It started with the classic blip in my right thumb, the neurologist ran every test that could be run, then at the end of about 6 months of testing he said there was nothing wrong with me. I asked about the now twitching and gait issues and he blamed my minor alcohol consumption. I went to a second and was told the same thing. I moved to Las Vegas and was referred by my primary to the Cleveland clinic and within the first 5 minutes I had my PD diagnosis. I knew I had it and it was a relief to finally know. 3 years later I ended my 25 year career, got married and moved back to Utah. Now dealing with the move, retirement, marriage, PD and several other issues... not sure I did the right thing... but I am a survivor and I always win in the end....

Well, Rick, PD is a life-changer itself in some ways so I'm not surprised that some other changes accompanied your diagnosis. I definitely get the feeling of relief you get when you finally know what is going on with your body. There is a validation that comes with knowing there is a reason for the twitches, tremors, and stumbles. That said, I expressed my relief to my doctor by saying, "Thank goodness! It's not all in my head!", to which he replied very seriously, "Oh, no. It's ALL in your head. Parkinson's is a brain disease." I recall the exchange sardonically to this day, while I confess to seeing some humor in it.

You probably already know that stress is a red flag for anybody, but it is especially harmful for those of us with PD. From my experience, I feel best and function best when I am well-rested, well-medicated, well-exercised, and stress free. Usually, that's three more than I can manage at one time! Moving, retirement, marriage, and a PD diagnosis are all high stressors. I hope you have some things in place for coping. Surviving is great, but do it in style.

Rick, I hope to hear from you again.

Ana, what's going on? We haven't heard from you.

L

Readerleeder, thanks for your reply, it has been crazy to say the least but A lot of good has come from it… Shortly after I was diagnosed I needed to keep my head in a good healthy direction. I have been in corporate America My entire life and I've never really worked on a vehicle, did not even change my own oil, and shortly after diagnosis I found myself building a desert race truck. My plan was to race in the mint 400 in Vegas for Cox charities. Not being a mechanic I found myself with the truck that I had pull the engine transmission out of and completely rebuilt the motor with i'll kinds of racing parts… I found it very therapeutic almost like a giant puzzle. When I would take off a piece I would Bag it and tag it, If I did not know what it was I YouTubed it .... I did not make last year's race we blew an engine the day before… I had 27 people staying in my house visiting from out of town, we ended up being spectators… Now I'm in Utah starting over with a new race truck... again I will be racing to raise money for research, primarily stem cell. I was asked when I left Vegas what I was going to do in Utah in my retirement, I said "build race trucks what else what I do" When racing through the desert at over 100 miles an hour the vibration from the suspension is very noticeable, so noticeable you can't even tell that I have a trimmer lol

Sorry I haven't replied. Things have been very hectic. But I need to do this for myself. Being able to talk with other people with parkinsons

Hi my name is Annette, I have had PD for 17 or so years , have had DBS and it is the best thing ever

Hi Anisette can you please tell me what is DBS?

I'm glad to hear from you, Ana. I'm happy to chat anytime.

hi my name is mark. I am 65 and surviving in fl. when I got here 8 years ago my first priority was health insurance and a pcp. at first I was very pleased with both. the pcp business grew so fast that he hired nurse practhicaner s to help. my pcp for 3 years kept telling me I didn't have parkinsons. after 3 years he finally prescribed carbadopa/levodopa. it helped but it was to late for my sofa. the tremor in my left arm was so violent it put a hole in my sofa arm rest the size of a bowling ball. on one of my appointments I got a nurse practi she was heaven sent. my pcp would look at my bloodwork and say see you in 3 months. Sharon my nurse practi listened to me, take her time gave me support and a hug. she immediately got me a referral for a neurologist. he diagnosed me in 5 minutes and prescribed a second med. it helped but it had a rare side effect, my ankles turned deep purple and red blotches going up my legs. he didn't recognize it, I used WebMD and found it listed as a very rare side effect. his next move was valium. which didn't help and I was scared of the addiction, my next appointment was cancelled 2 days before it was supposed to happen. he quit my insurance company. finding a new neuro is very hard to find. I got a new one and shes really good. we haven't found a new med that I can afford but we are still looking. she did highly recommend a cane because all the problems are on the left side diabetes and the neuropathy is affecting my balance big timeI also have fallen head first into walls causing lots of bruising and pain all over. anna my best advice is to talk to us and let out all the fears and worries and we can all benefit from each other. so talk to us . your friend mark

Thank you Mark for telling me about yourself. Any questions for me? I am new to this kind of website. I want to hear from mire people more about your day to day living with Parkinson's. Sometimes I feel like no one around me truly understands what the body goers through.

Hello, I am new to this site. I have looked at it in the past but it does not seem that active, and I have not taken part in it in the past, but have decided to try. I am 67 Y/O and was diagnosed with PD in 2008. I do well on meds but the doses keep having to be raised. It was yours and one other post here, Ana, that made me decide to join. Like you, and probably many of us, we go through PD mostly on our own. While I am married and have family and friends it still is a solitary journey with PD. The emotions run from "hey, I'm doing well and everything is ok," to "What is happening to me, this is out of control and there is no hope." One website that I have found to be very good is, http://katekelsall.typepad.com/ .
One thing that is rarely talked about is the expense of the medications. Even with insurance they are high priced. And having PD means that you have to pay the price, like an addict. Fortunately for me I can pay that price but I do not know where I would be if I could not. I think that PD turns you into a wind up doll. You take the meds, that winds you up so that you can walk and talk, the meds wear off, you wind down, you take the meds again and wind up, and on and on. Not too optimistic but, boy, I would hate to have had PD before dopamine was available.
If there is one thing positive in this it is that we live in a time where dopamine and other meds are available, and DBS, also.