Parkinson's in pennsylvania

[hollyb2]

It was at the end of 2011 after 3 different doctors one who is a tremor specialist(didn't even know there was such a dr,) The words I always thought were for other people came out of his mouth Holly you have Parkinson's . My husband and I just sat there while he filled out the forms I will be needing for work. He asked if I had any questions , I did a little chuckle and told him I had recently saw my grandmother detererate from pd until she past. Then he asked again do I want to ask him anything. I just looked at him asked him about my new medication. then told him I would start making a list once this all sinks in. For the first few weeks ,it seemed to be going well, then like a lighting bolt it all hit me . I feel like I am loosing my mind , one minute I am happy the next I am crying, one day things are quiet and calm the next I could churn butter. Then on New Years eve my Grandson leaned over and asked me "Giggi why do you wiggle so much? I explained as best I could , and told him I had medicine , He thought the meds made me wiggle I told him it is to stop it . His words came out as clear as day Tell the doctor they don't work. My grand children are helping me keep things in perspective.enjoy each day for what you have. You don't always know what tomorrow will bring!! Hang in there everyone.

[CheriH]

I'm 56 yrs old and was fighting Lupus and active Sarcoidosis when I was given the diagnosis of PD in July 2011. Sarcoidosis had damaged the left side of my heart muscle and caused an electrical problem with my heart. It had also attacked my skin. My dr. was concerned it had gotten into my central nervous system because of the symptoms I was experiencing. He sent me to a neuro to be evaluated for Neurosarcoidosis; but instead was told I have PD. Honestly, I don't know which one is worst. I refused to accept the PD diagnosis, and got a 2nd opinion on Dec 1, 2011. The 2nd opinion confirmed the PD diagnosis too. I've had a hard time accepting this, which I am sure many have; but I won't give up and I won't give in to it. I know exactly how you feel....some days, I can't stop crying; but I've decided I am going to live each day to the fullest and try to not obsess about the future and things that I have no control over. My grandgirls are the best medicine I have. When I am with them, I forget all my problems.

Best wishes to you, Holly.

Cheri from Tennessee

P.S. I just posted this same message on Anthony's blog. I hope you don't mind that I repeated myself.

[jillannf6]

hi i am in eEngland and ahve PSP (A rare type of parkinsons) no meds to take for it and i may have 2/3 years...

i am 66 and am tyrign to get something out of each day

i was in a bad state b4 diagnosis - cryign so much not knowing what was wrong iwht me and I feel so much better now (since dec 2010 diagnosed)

;love jill

[wifeofparky]

We also were in a state of shock when we heard his diagnosis. To make things worse, on our second visit, he thought Ken had Shy Drager Syndrome. He kind of just dropped the name and ordered some more tests. I did my research but said nothing to Ken because the outcome of Shy Drager is very poor. Thank God I kept my thoughts to myself because when we went back, the neuro denied mentioning Shy Drager. Where else would I have gotten the name if not from him? It took my husband nearly a year before he would talk about PD and now he tells everyone he has it so they understand that he is not stupid when he can't complete a sentence or express his thoughts. Even then, people can be cruel. I thank God for everyday he gets up in the morning or afternoon-which ever he can do. We've been married for nearly 42 years and together for nearly 45.

This is our new mantra: Cherish Yesterday, Dream for Tomorrow and Live for Today. It is inscribed on a plaque over our dining room table. I read it every day for strength and inspiration.

[GrammyC in reply to wifeofparky]

I love the mantra. It is a wonderful inspiration. Thank you for sharing.

[wifeofparky in reply to GrammyC]

that's what we are here for. To share and help each other.