New to having Parkinsons

My dr handed down the Parkinsons diagnoses bout two weeks ago. I went in to see him after have lots of stiffness and pain through out my body.

Especially in my shoulders and back  and legs, and my wrist and hands. I also had real bad restless sleep, with lots of jerking around, with my arms and legs. He had me hold my hands out and I had some shaking in my left hand, not too unusal for me, never thought anything of it. Then he did some other movement tests, and said I have cogwheel rigidity. I thought i just had sleeplessness, and pain.  I thought I had fibromyalgia, that would explain the pain, the good days and bad days. Well he put me on Mirapex, half mg twice a day. within 4 days I was feeling better. So 10 days later I go back to check in, after doing some research on parkinsons. This time my husband went in with me. I had a few questions and so did he. I first started off asking how he would know to think Parkinsons on someone my age. I am only 37. Still pretty young. and he told me he has several parkinsons patients and when a long time ago he failed to catch the parkinsons in a patient and yrs later had it diagnosed, he said he had an aahaa moment, and was determined never to let another patient go thru the things the other one did. So he made it a point to study up on parkinsons. Okay felt a little better then, then he sat and explained to me and my husband his reasoning on my having parkinsons. My husband felt better. I request more blood test, he wrote the order for more blood test. Then I brought up seeing a neurologist, afraid he would be a little affronted that I want to talk to someone else. He said I will write you a referrel today..Oh and he upped my meds 1mg twice a day, asked me to come back in a month, then said if you need to come back before then, get in here, thats what I am here for.

Needless to say I like my dr, have oppted to wait on the neurologist for a bit, feel even better with thisdose of meds.

But I AM SCARED TO DEATH AND REALLY MAD....My family is not being supportive at all. so kinda dealing with this with just my husband.

Any way just wanted to write this out to whoever reads it and want to give feedback...I am all about listing to advice, dont mean I will take it, but then again, I might.

I got diagnosed with PD in August 2010.

I had, originally, asked my family doctor about my twitching finger in summer 2008.
Finally in October 2009, my wife, with me, explained my symptons which now included a shaking lower left arm, which I mentally controlled from shaking most of the time (without realizing), my doc said she would set me up with a specialist appointment. Several months went by and the specialist had not received the request. Turns out the doc didn't finish sending the request. Doh! So the receptionist went ahead and booked an appointment immediately following through (though earliest possible was 7 months later in Aug 2010) Nearly a 1 year wait. . .

I'm a realist and I have my own way of dealing with PD and how far I will let it go before I get tired of it.
I remember when I was in my early 20's and a friend of my parents said he'd wished he'd done this and that. He admired my going to Europe. Well I never forgot. Live life now. In my life, I've visited 36 countries; this is what I enjoy. And I will continue to enjoy the present, just I'll accelerate the pace of enjoyment as much as I can afford to, while also ensuring my wife is taken care of. I'm very lucky in that she's loving and sweet and has not been phased by my diagnosis. Thing is, I know, unless breakthrough's happen, one day down the road, I will be a burden. At that point, I want to set her free with finances in tact so she can start over (move back to her city, find a new guy hopefully). She doesn't like that plan. As I said. . . I'm a realist.

For you, enjoyment might be the little things your kids do. Enjoy them and let your kids see your happiness now. Enjoy your husband. Hug more, private time more, etc. Be a little crazy and memorable for him.
Have no regrets.

I do continue jogging. I lift weights. I either bike or walk 2.5 miles to work. Hold something in left hand to more easily control my tremors while walking.

My specialist, one of the top ones, says I'm in stage I, early PD.
According to definition, I think it's stage II.
I think I'm due for an upgrade from 1 mg Azilect. Will see in September 2011's appointment.



There are some good things happening in research. I like the following 2 best:


ProSavin
http://www.oxfordbiomedica.co.uk/page.asp?pageid=29

http://www.dailymail.co.uk/health/article-1389864/Parkinsons-test-breakthrough-single-brain-injection-ease-symptoms.html
A single injection of genes to the brain can substantially reduce the symptoms of Parkinson’s disease, research suggests.
The treatment improved walking and dexterity by up to 61 per cent in patients, a conference heard at the weekend.
Some were able to take the bus or complete a round of golf for the first time in years.


And

CU researchers find promising drug for Parkinson's disease
Tuesday, July 05, 2011
Colorado researchers have discovered a drug that stops the progression of Parkinson's disease in mice and is now being tested on humans.

http://www.checkorphan.org/grid/news/research/cu-researchers-find-promising-drug-for-parkinson-s-disease




So I am also continuing to hope too. It's like a race between when I'll feel meds don't help enough and between breakthroughs on the horizon. Really hoping on Prosavin.
Meanwhile, I've conquered my desire to do karaoke on stage, on a cruise and in pubs. Just keep living and accelerate desires. If I want to go go-karting, horseback riding, or up in a small plane, etc, I will go (finances dependent of course). I got kinky ones too. He.

On 1 mg Azilect, I stilll have to control tremors mentally but it does help muscle rigidity and I no longer have an ache in my upper right shoulder blade. I currently hide my symptons well so others do not know.

The part you wrote:
"But I AM SCARED TO DEATH AND REALLY MAD....My family is not being supportive at all. so kinda dealing with this with just my husband."
Truth is most others would only be momentarily sympathetic. They have their own problems in life. While those problems most likely don't compare to PD, it's still theirs. Just a reallity. Sounds like you have a great husband. That's what really counts.
My brother, when he found out I have PD, wrote me a long email about everything he would do to help me. He'd go to gyms with me to keep me doing PD muscle workouts, etc. Well that and all his plans never happened, but it was a great spur of the moment email. That's the way things are. PD is my problem. My wife is standing by me. PD is your problem. Your husband is there for you. This is what counts.
I hide my PD so well and avoid talking about so far that if I see my brother, all he does is complain about his job, talk about his plans. Blah blah blah. Just like always. So I obviously hide it well. Takes concentration.

I have one other post, so far, but I think others are too worried to post a reply.
(see my 1st post https://www.healingwell.com/community/default.aspx?f=34&m=2161328).
I'm cool in the present. I'm wanting information on how long I might be able to work and people might be afraid to respond thinking I might do something in the present.. I will, down the road, unplug myself from the Matrix if meds lose effectiveness. Down the road. Years from now, hopefully many years. I'm still counting on breakthroughs and enjoying my wife, desires, fantasies (hopefully my wife will go along with. s e x things… hehe), travel, friendships, plus the game of hiding my symptons. This is progressive, so my state of mind will eventually change, barring breakthroughs. So, people, give me a clue on how fast I should accelerate a fun life. :O). I now have the have-more-fun-and-be-a-little-crazier card.

Oh and get in to see a specialist. Sounds like your doctor is trying to help, but go for the best help. Nothing yet, on the market is proven to slow PD. Not even Azilect, so you're only late to getting meds to help symptons. Azilect helps my symptons, except for tremors.

Good luck. And enjoy now.

TruthGenesis
I just read your other post.

Maybe I am a little luckier than you. I have no desire to travel to other countries or go on cruises. I live on a lake in Micigan and am happy cruising the lake. We have lots of company during the summer. Not much in the winter. We go to Florida in the winter........her idea. What ever makes her happy. I don't focus on what makes me happy, just my wife. OH, by the way, I have an ileostomy. Can't wait until I cannot control tremors, etc.

Dan