We are in our late 60s and my husband was diagnosed with pd on one side only, after a Datscan in Augaust 2011. prior to that he had seen several Drs who could not agree on the diagnosis.He has complications in that in Nov 2009 he had a major cardiac op during which he had massive blood loss and suffered some damage to his brain, slowing him down.
He was started on Madopar but couldnt tolerate a stronger dose. he saw a different consultant in March who says he has Pd with Lewy Bodies. I dont understand why this didnt show up on the scan. But anyway Hubby is now on Sinemet instead, now up to 6 tablets a day but no better.
He likes walking but gets breathless soon. He will hoover the house for britain but has little interest in doing much else these days, when he used to be a good help. The most frustrating thing I find is that often when I speak to him he doesnt answer, nor does he want to use his left arm and hand, which were affected by the op and now have the tremors. Does anyone know if this is the dementia from the Lewy bodies or is it normal with pd.
I am trying to cope on citalapram, GP is great, but sometimes you just feel so alone.

Hi Withy, just a quick response to welcome you on to the forum. Lots of other replies wil no doubt follow with support and advice but in the meanwhile please note the number of the excellent helpline at the top of this page and slso the "Local to you" button through you should be able to track down a local support group which can help you and/or your husband.

Welcome to the forum Withy,it'sagood cure for alone.

hi welcome to the forum ,im ali im 43 years old and been dx for 11 years now,there is good freinds to be made on here and good surport too.i have tremors,it started for long time on my rite hand side,arm and hand manley then went over to my left legs spazerm and that makes my walkin say your hubby dont seem to have much intreste in things,i can relate to that,some days i wont to stay in bed alday,and dont wont no one near me,wont to be left alone,and become depressed and very sorry for myself,then on ohter days ,people push me along and i get movin and start doin not sure why ur hubby not talkin ,may be he feels he needs that push ,just a guess? as for lifting his hand and arm ,agin im not to certain if it to do with his can can say is my muscles are very weak in me arms,to put me arms out in front of me,they dont stay up long at all,fall back down agin ,like heavey weights.i think it would be best to speak to his neuro about his conditon,cus he has things goin on.or we could be doin guessing,and come up with rong answer for him.i wish him well and you also,sorry i not much help.but also u could give the surport line a call on puk ,number is top left hand side of this page,its worth a try .good luck xand please keep in touch how he and ur self get on please x:smile:

Thanks Eileen patricia, Mosie, and ali j, will make a note of the phoneline, things a bit brighter this morning, a bit of sunshine helps and the reminder that I am not alone.

good lass,well done,ur not alone,we are here to help one another if we can ,keep ur chin up x:wink:

Hello Withy,

Welcome to the forum, I do hope you can get things sorted out for you and your husband, do you think that perhaps your husband's hearing was affected by the operation as some people with a very slight stroke have a hearing loss on the side affected and no other lasting effects, perhaps its worth checking into.
You will always find plenty of friends on here so don't be afraid to have a good chat or moan as everyone will understand. If you have a pd nurse in your area it may be very helpfull to get in touch with them and ask them to explain and answer all your questions.
Good luck and see you on here again soon
best wishes vivian

Welcome Withy,

I was dx'd 5 years ago! For the past two years I have experienced a dull stabbing chest pain when I first start to walk. The pain manifests itself as breathlessness. I have had extensive tests and all anyone can say is it is probably something caused by PD. The good news is I can walk through the pain and reach some kind of normality. It happens every day and is worse in Winter.There is some information available on other websites about this and other PWP's have reported similar symptoms.


Thanks Vivian and Bogman. No pd nurse in Chorley, one in Preston but she only deals with patients under their neurologists. Hubby dicharged from there over 12 months ago with a "brain damage but not pd diagnosis" - baised on neuropsychological assessment. Only help has been from the pd information and support worker who the nurse put us in touch with. We have joined the local group but, as we are finding out everyone is different.
Its good to know about the breathlessness. Hubby panics at the least thing these days, making it difficult to know what to worry about.