What a great surprise!

[Milly]

Hi everyone,
I didn't know BT was up and running again, so to find you this morning when i was doing a bit of surfing - (the net - not the sea) was a lovely surprise. I have missed BT and thought it was gone for good. Hope everyone is doing ok. I have just taken my second dose of Sinemet CR, started yesterday, as i was fed up of struggling with just about everything, and I dont know if it would work that quickly, but i had a great day yesterday, cleaned all the windows in the conservatory, had a silly dancing session with my daughter and had a game of squash, have to admit, i didn't sleep too well, but yesterday i felt as if i was me again - hopefully Sinemet will give me my life back. Anyway its good to be back!

Take care
Jill

[lindylanka]

Hi Milly,
Good to hear from you. We meet here and at neurotalk who stepped in and gave us a home while braintalk was down for so long. Some of us post in both places.

Yes , sinemet can kick in very quickly, and helps make things more possible.

Glad you are back
Lindy

[Shirlee Blevins]

Hello Milly and Lindy. I am new here and basically am running about in the dark. I was diagnosed with PD 5 months ago. How long have y'all been diagnosed with PD?

Shirlee in Alabama

[lindylanka]

Hi Shirlee, and welcome to braintalk.....
I've had a vague dx of PD, possible PD and various shades of neuro opinion for about 5 years now, on sinemet for getting close to 4 years. And have been coming here for a similar amount of time. I remember well feeling very much in the dark, as nobody tole me nuffin'! It's a very variable condition, you have to learn how to manage your own designer version!

The best thing anyone said to me was "have a good attitude to your PD'

Let us know what you are on, how you are coping and don't hesitate to bring your questions here. We're not medics, but do have to deal with all the practicalities of day to day coping with a long term condition.

This place has been a great help to me, there are some great people here, and over at neurotalk too. We recently suffered a rather long crash, and the board is only just starting to recover, hopefully in time more people will be here and the posts will start to reflect a wider range of info on PD. It's a shame about the old board, the collective messages of so many PWP's was a fantastic resource.........

Lindy:)

[Shirlee Blevins]

Good Evening Lindy:

It was so good hearing back from you. As you can imagine, I rather feel like a feather in a windstorm right now. You asked what I am on. I take 3 mg of Requip 3X daily. They also have me on a specially formulated wafer of CoQ10 1200 mg per day. This CoQ10 is specially formulated for PD patients as it is the only type which crosses the blood brain barrier in the brain. Soft gel CoQ10 does not cross this barrier. That is it for my meds at this point. I was dx June 22 of this year. However, I had been having subtle and vague symptoms since April of '04. Had a local horse-doctor treating me for anxiety and "mini" panic attacks !! Also treated me for Essential Tremor. Finally, I changed docs and the new one initially leaned toward the Essential Tremor thing. However, after another 5 months he began to get suspicious and sent me to a neuro. It took the neuro about an hour to make a dx. I am also seeing a Parkinson's specialist at UAB (University of Alabama Birmingham Medical School.) This specialist has just come down here from Harvard and Mass. General Hospital (Both leading PD research facilities). He is really fabulous.

You said you have been on Sinemet for about 4 years. Have you had any problems with Dyskinesia? Do you still drive? Do you have much impairment of any kind? You are right---------from what I have been able to find out, everyone is an individual situation with PD.

I wasn't thrilled about this dx----------however, I figure I will just handle it and be thankful it is not something worse..........like ALS for instance. I have a dear friend who is dying of ALS as we speak. Lost another friend last spring to a brain tumor. She was only sick for 7 weeks and then she was gone. Barely had time to say good bye. So yea, there are lots of things worse than PD.

Well, I guess I have rattled enough for now. Again, thank you for answering my posting. Stay in touch.

Shirlee in Alabama

[Milly]

Hi Lindy, and really good to hear from you too, hope all is well your end.

A big welcome to you Shirlee, you have found a great place here. I was diognosed 2 1/2 years ago, when I was 45. I stumbled across this site, when looking for some answers on the medication i had been put on, so when i found BT, i posted my first thread about Requip, and was amazed by the wonderful and caring replies i received. Here, everyone is in the same boat so to speak, and there will always be someone who has experienced what you may be going through yourself. When i first knew i had PD there were many emotional and medical questions i needed answers to, the people at BT provided the advise and suggestions which helped me through the first 12 months. Just to let you know about my meds, I am on a fairly hefty dose of Requip, plus I have just added 1/2 Sinemet cr. My main symptoms are rigidity and slowness of movement with a slight tremor on my left hand side. I am lucky at the moment as i do not have any pain.

Once again Shirlee, welcome aboard, and look forward to speaking with you soon.
Take care
Jill