Anyone be diagnosed with Parkinson Plus?h... - Cure Parkinson's
Anyone be diagnosed with Parkinson Plus?how long after the original diagnosis?is the prognosis always that grim? Any comments please.
hi a
SONIA
I Hav ebeen dxd iwhg PSP A PAKINSONS PLUS TYPE OF OLLNESS AND AM ISTILL HERE
+2 yrs on since diagnosed
so it it anot al l bad news and there are gREAT poeple on thsi site and tHE PSP SITE
LOL jiLL
What is this person talking about? It is easier to translaete arabic than what Jill has written.
Please don't be rude; remember there are a lot of people on this sight with tremors or problems with fine motor movements in there fingers, etc.
This is what Jill wrote. "Hi Sonia I have been diagnosed with PSP a Parkinson's Plus type of illness and I am still here. + 2 yrs since diagnosed so it is not all bad news and there are great people on this site and the PSP site". Her signature has always been...LOL Jill
Don't be rude about Jill's writting. I have Parkinson's and have noticed a deterioration in my writting and typeing. I tend to misspell words or leave letters out of words alltogether. It has taken me ages just to write this post. People can't help the way they type or write. So put up with it!
I have been. I do not say that is my diagnosis to most people because it takes too long to tell them about it so I just say I have a form of Parkinson's. That has been my original diagnosis and am told by my movement disorder specialist that he feels that I am one of the lucky ones because I am responding to meds well and seems I have the slow kind as to the aggressive type. Time will tell as symptoms change. I may be in denial but I do not feel I have what they say, just aggressive Parkinson's. I just try to put a silver lining on it. Must stay positive and never give up hope. You know, they say in neurology that your diagnosis can change because of complexities of the brain and for all doctors know, they still know so little.
Wayne
HI WAYNE ,
YOU SOUND VERY POSITIVE AND I DONT SEE HOW YOU CAN HAVE PSP AS YOU ARE RESPONDING TO YOUR MEDS ..
That's what I say but my doctor at the Mayo Clinic tells me that they have learned over the last couple of years that there are variants that do responds to meds and are of a slow acting type. My age being another factor as I am 47. In some ways I come across as PD but I have the falls, however I have learned to carry my body in a way to avoid most and use a walker all the time but have eye issues that say PSP. They tell me as time goes on symptoms will tell the tale. Fact is, I feel as if most times they are just guessing with the complicated cases. But they LOVE to play with us, I can't tell you how many times I have gone to see my doctor to have several more doctors walk with him to use me as a teaching aid. Very weird experience.
Wow! Never heard of PDP! Now I know what that stands for! Why not ask your Neuro? Or search the Internet! How can PD have a Plus, when we know its a progressive Disease? Will have to do some searching of my own! Thank you for sharing!
Blessings,
Carol <><
Well not plus as in an advantage but different variants. So that includes MSA, PSP, CBD, (PSP has 3 variants) Huntingtons, (MS has some similarities) familial PD, vascular PD, drug induced PD.
I wonder if there's any more?
Hi I have been diagnosed with pd since 2001 and am just starting to feel worse. I am starting to get lots of problems eg weight gain,swollen limbs just had to have my wedding ring cut off after 45 years,poor sleep,itchy legs,problems with bowels,constant cough and so the list goes on but im still here Maggy
I am taking 1/2 25/100 sinement and neupro patch 6mg, I was just put on Apokyn and it is a miracle I can inject it and with in 10-15 miutes I get up and go. I work full time and Apopkyn gave me my life back!
I WASDX WITH pd IN JAN 2010 BUT AFTER A DRUGS HOLIDAY ( AS NOTHING I TOOK DID ANY GOOD) i WAS DX WITH PSP IN NOVEMBER LAST YEAR - I FEEL THE SAME AS I DID BUT ALITTLE LESS DRUGGED UP - AND I CAN GAVE A DRINK NOW !!
Sharon,
Please think of me next time you raise a glass (of alcohol)!! I do have the odd snifter but as a special treat due mainly to the meds. You were so brave taking your 'drugs holiday'. What a lovely expression. I expect the reality was somewhat different. It's lovely to see you back on-line you are always so positive. Many hugs, Angela.
I was dzed at J Hopkins w/psp and then dzed with "a rare no name" form of PD by a neuro-radiologist. I'm still hopeful.
My PD symptoms started on May 5, 2003. Meds control the symptoms, and my PD started to advance in January of 2012. The main changes are the start of a slight tremor about twice a week for about 20 minutes at a time, and stronger leg muscle pain.
Visit the site FightingParkinsonsDrugFree.com and learn how to cure your PD in about one year thru proper diet and doing Qigong exercises. I have talked to over 40 people doing this and they all say this is working. I am just starting this and it does seem to help.
Good Luck to All,
Wayne B
I WILL DEAR ANGIE - HOW ARE YOU ANYWAY - I SEE YOU ON SKYPE OCCASIONALY BUT DONT DO THE VIDEO THING AS MY VOICE IS SO PATHETIC !
