The new girl ...

Hello, I was diagnosed with Parkinson's in October 2009 (after several mis-diagnoses). Responding well to treatment. Just looking for friends in the same situation .....

[wskyrvrgp]

hi new girl, i'm the new guy [just joined] i live near atlanta ga. what city do you live in or near. look forward to hearing from you.......ken

[Hidden in reply to wskyrvrgp]

we moved from NE Ohio to Hampton VA in 2009

[Susie01 in reply to wskyrvrgp]

I am in Chattanooga, TN, was diagnosed in Feb. 2011, also after searching for the answers for what the heck was going on with my body!

wskyvrgp, have you looked into treatment trials at Emory? They recently received a large sum of money from a former patient. I had an email from them yesterday, they are looking for volunteers for a study regarding orthostatic hypotension in folks with PD. I did not qualify b/c I do take meds for high blood pressure though I do have times when my BP drops dramatically and I have to adjust medications.

VLRoark, welcome to the site. I found it about a month ago and can finally feel that I am not alone!

[blackcat in reply to Susie01]

hi new girl

love the picture of your cat. beautiful baby. hello and welcome to the site i am looking forward to getting to know u. what part of n.e ohio did u live in? i live in the ne area also so i wonder how close we were. i was dx in 2009, i have some other health problems that mimics pd so it has been interesting when they were trying to decide what was going on with me it is difficult to find a nuero doc that has a speciality in pd.

what medications are u on again? I have been holding pretty steady at stage 1 , the last time i saw my neuro doc has been ll months, which i don't care for, because i think they(he) would catch some small things as they were starting if i went like every 3 mon so i keep looking for another one i do keep busy though and try not to dwell on it but it is difficult at times when u all of a sudden feel like you legs feel like 2 tons and u are so tired from combination of meds and lack of sleep. i really am looking forward to chattting with u. again welcome there are awesome people on this site and so many have great information to share. good luck , uu are in the rite place

b/c

[Hidden in reply to blackcat]

Hi Blackcat! I lived just south Cleveland OH (Brunswick in Medina County) After my husband lost his job, he retired and we moved here where 2/3 of our kids and grandkids are. I am currently taking rasagaline (azilect 1x daily), and myipex, and carbidopa/levadopa 3-4 times daily. I also supplement CoQ10 daily - I read somewhere that it helps slow the progression. I see my neuor every 6 months (it was every month in the very beginning, but I've stablilzed some since then). I find that yoga ever morning really, REALLY helps the stiffness. If I go 4-5 days without yoga, I can barely move. I have a treadmill that I can hold on to while I walk as well. Really glad to get a chance to share with others who have similiar issues. keep in touch!

[blackcat in reply to Hidden]

i live down towards steubenville ohio i am only about an hour away from pittsburgh pa

i have found the same thing with yoga but i have also found that at times if i do it everday sometimes i can't walk either. i can't do a tread mill i get really off balanceith the belt movement

i do better with a stationary bike. we take the same meds except i only take the carbidopalevadoa 3 times a day and tranzadone at h.s for my leg and foot cramps . take care of yourself and we will chat more and keep a couple steps ahead or ms parkinsons

bc

[Dennis]

I went to three doctors including Mayo Clinic in AZ. 2 of the 3 said I did not have PD. 1 agreed with Mayo that I did.

[Hidden in reply to Dennis]

I saw doctors at the Cleveland Clinic and University Hospitals in Cleveland; each one had something different to say - Reynoud's syndrom; inflammation and/or bursitis in the hip; arthritis,stress, etc.. We moved to the Hampton Roads area in 2009 and I was so relieved to finally get a definitive diagnosis. The doctors here are wonderful (not that the others weren't).

[Susie01 in reply to Hidden]

Though none of us would choose to have PD, it was also relieved to finally know what was wrong with me!

[Joealt]

Welcome to Parkinsonville!

[Hidden in reply to Joealt]

Thanks!

[Hidden]

I saw doctors at the Cleveland Clinic and University Hospitals in Cleveland; each one had something different to say - Reynoud's syndrom; inflammation and/or bursitis in the hip; arthritis,stress, etc.. We moved to the Hampton Roads area in 2009 and I was so relieved to finally get a definitive diagnosis. The doctors here are wonderful (not that the others weren't).

[Aussie]

Hi NEW GIRL,

I am an "old girl". Diagnosed in 2003. Live in Sweden but actually come from Australa. Love to hear from someone in Australia. Sweden has a very good network for PD.

[Hidden]

Welcome, I was diagnosed with Parkinson's in January 2006. It's was a rough beginning, but I believe I am better now that I was the first 4 years.

[Hidden in reply to Hidden]

It was rough for me as well until we got the meds straightened out. I find that yoga helps a whole lot!

[ram927]

another hi from our crowd wish I could say hi for different reason but we play the cards we are given I'm also new to this group and thankfull it is here

[parkey]

welcome to the group,how old is everyone im 53 found out 4 years ago i had parhinsons had symtoms 8 years before but everyone said to young for parkinsons. i go to booth gardner in everet washington st all they do is movement disorders is anyone from washington?

[Hidden]

Hi Im Maggie from uk.I was diagnosed with parkinsons in 2001 It was the biggest shock of my life and took a few years to come to terms with it.I am 63 years old anr havnt got too bad yet but am on a lot of medication.

[Hidden in reply to Hidden]

what meds are you on?

[Hidden in reply to Hidden]

requip xl stalevo

[shasha in reply to Hidden]

hi maggym

i am from selsey in west sussex but now live in france - where are you ?

[Hidden in reply to shasha]

yorkshire

[Therese]

Hi new girl. I'm Therese. I fairly new to PD - was diagnosed in July. So far I have found people on this site to be very kind and understanding. You will too. So welcome here. Therese

[Hidden in reply to Therese]

thanks, Therese!

[Aussie]

Hi again, I am the Aussie/Swede connection, My father and his sister had PD.

I think mine started around 99, but diagnosed in 2003. I lead a relative active life, take medicine 15-18 times a day and am on the waiting list for DBS in Lunds Hospital in the south of Sweden. I had never written a comment till I came into this page. I think we get very useful information and tips. Thanks everyone and a big welcome to "new girl"

[Lightning94]

Hi my is Bill, diagnosed in 2001. I've finally hit my wall on medicine and had the DBS surgery almost exactly a year ago, but unfortunately developed an infection, Then by the end of February of this year the surgeon had to remove everything. It was working incredibly great. I was on a total of 2100mg of carbadopa and was down to 675 in just those three months. I was supposed to have everything put back in a month ago but my surgeon moved and the main neurosurgeon of the practice is now going to do it but not only has his patients but the other guys as well. I am presently on 2700mg of carbadopa and do the dyskinesia disco every night. If you have any questions please feel free to ask me. I would love to share what I've been through

Bill

[Jerebet]

Hi new girl I was diagnosed 10 years ago and I am still stage 1. I have minimal left side stiffness and tremor. I credit my remaining in stage 1 to biking and yoga and taking azilect mirapex and amantidine. My 1st diagnosis was essential tremor but then I found a good neurologist in denver who gave me the correct diagnosis. I hope you will be as lucky as I have been. I am starting to see some progression in the disease. ocasionally my left foot and left hand will posture, and sometimes I have to remind myself to walk heel toe and not shuffle but beyond that I'm very lucky to remain mobile. feel free to contact me any time.

[Hidden in reply to Jerebet]

I am also on azilect, myrapex, but I take sinemet (carbo/levodopa). Once we all agreed on the med combination and frequency, I began to feel a whole lot better. I always have to remind myself to stand up straight, as i tend to slump. I do well and keep active. Yoga and walking ....I truly believe exercise is the key!

[Hidden]

I was told two years ago and am still trying to find right meds and all that. I like groups like this because I can see what others are going thru and gain support with people that are facing the same thing.

I have attended a couple local PD support groups here in Des Moines and they are good too.

Good luck.

[muttie]

I agree wIth VL ,EXERCISE is the key! I've had PD for 10 years ,but I really didn't start exercising until I joined Big And Loud. It is the brain child of some really wonderful people at the University of Arizona,and now has become Exercise 4 Brain Change.Wow,has it made a change in my motivation to get going,It's helped me with my self esteem, its a great support group and I love them all!! If any of you would like any more information about this amazing group I'd be glad to tell you all about it.

[Hidden in reply to muttie]

you are absolutely right! if I get busy and don't do my 15 minutes each morning, I am a stiff mess after about 4-5 days! it has been a lifesaver fr me.

[DeParkiePoet in reply to muttie]

Thanks Muttie: How would I get the website?

[mike0609]

Hello New Girl, I was diagnosed in 2009 as well, in June. I got into a clinical trial in Boston shortly after and the 2 year trial ends this coming spring. I am not currently on any meds for PD but am on the trial med. The trial is to hopefully slow the progression of PD.

Mike

[Hidden in reply to mike0609]

Hi Mike, do you know the name of the med you are on?

[mike0609 in reply to Hidden]

Sorry I am so late responding. The drug is Inosine which can actually be purchased OTC at GNC. Or I could be on the placebo and won't find out until after the study ends. I do go in for test regularly but now I am near the end I go in every three months.

[DeParkiePoet]

Hello NG: welcome to PDville:

There are a lot of very caring people on the pages here, stay positive, active and make the best of what you can. All will be well, ( as can be)

[muttie]

HI JOMC

The website you were asking about is....PWR!GYM TM or E xcercise 4 Brain Change

GOOD LUCK!