If you could turn back the clock to the day and time when your PD was first diagnosed, what would you do differently between then and now?

[ronn]

[janab]

I would intensify my own investigations because my doctors do not do that even though I have asked many times.

[JennyR]

Probably nothing except connect with this site more quickly. My husband found you I think only 18 months ago. The relief at having a firm dx was almost more than I could handle. I experienced more peace of mind rather than fear because for all the fumbling around the medical establishment did, when I was dx'd I was referred to a no-nonsense nero, who has walked me though every step of PD and is always there for me, as is my wonderful husband. I have made a few real friends on this site with whom I correspond directly. What more could one ask. Through all of you, I sort of know what to expect, but not when. So, I take your advice and just live one day at a time, being thankful for those especially great, non-painful days. And I keep my

Parkie family in my thoughts and prayers daily.

[Susie01]

If I could turn back the clock, my wish would have been to be diagnosed earlier. There were so many strange symptoms for several years. In a sense, it was a relief to put a name to the problem!

This site has also been a great benefit for me, aswered so many questions and allowed me talk about symptoms and know that I am not alone!

[rhougham in reply to Susie01]

ditto susie,took 3yrs to finally get the diagnosis,3yrs of guessing...went to mayo clinic...took 3 months.....also would have not waited almost 2 yrs to deceide to have dbs

[jillannf6 in reply to Susie01]

hi susie

iagree

the diagnosis was good for me (PSP in my case) and a no -nonsense neurologist to explain it a bit and advise me on wha t to do

and to join the PSP ASSOC!!1[

\LOLL jill

[Melodysam1890 in reply to Susie01]

I know what you mean about an earlier diagnosis - trying to LIVE with those crazy symptoms and having no answers was not easy!! I'm actually easier on myself (without the guilt of not doing things up to par) since the actual diagnosis of Parkinsons

[Susie01]

In retrospect, my symptoms started in 2004. I was going through a horrific divorce and my S/S were seen as anxiety, etc, etc... It was not until I could not stand without falling and gross involuntary movements that it was diagnosed. I take Azilect which keeps my tremors at a minimum unless I am under a lot of stress.

The hardest part for me are the cognitive, balance and speech issues...

[jillannf6 in reply to Susie01]

hi again

yes susie th worst aspect sare the balance and speech and commuinication issues#lol JIll

[Court]

It was a while before I was correctly diagnosed so would probably have chased for a more realistic diagnosis. I would have continued Line Dancing, which I loved but lost confidence, though probably at a lower level. I would hope that I could be less aware of other people's reactions to my Parkinsons and had fought, as I fight now, but earlier on.

Also that I had found this community earlier.

[PatV]

I would NOT have taken Requip or Mirapex, NOT had that second colonoscopy until we figured out why I couldn't complete the first one, NOT had acupuncture, and taken MORE dance classes and gone to more meetings walking everywhere I could. That's just me.

[jobby]

I would drive slower. i got a ticket for speeding on the way to hospital ! i would also like to have sat down with someone whos had the PD experiance,and talk.

[CJ49]

I wish I would have found this site sooner.....I've had PD for 7 years now, and just found this site a few months ago.....But "Better late than never!"

[Zuke]

Great question, useful answers. I feel lucky to have found this site within a month after my Dx in January..