Hi, guys - room for another one?


#1
My husband was diagnosed about 3 yrs ago. He went onto a low dose of Sinemet last year, first medication, which had an immediate positive effect. This of course has nursed me into a false sense of security, thinking for a while that all will be well and we'll carry on taking the little blue pills. But I've been reading this forum a lot because I want to talk to my Women's Institute group about how it is living with a PWP, and I've found it scary to be honest. I think he may have the beginnings of PDementia but he has a clinic appointment in May and they're really good there, so perhaps we can get some guidance.
Meanwhile, love and hugs to all - see you later.

#2
Hi Giffy and welcome,

I understand your concerns but everyone is different so please remember this when reading the forum. You don't say your husbands age and that makes quite a difference early onset pwp's are very different from someone who gets it later in life, late 50's onwards and even then people progress at different rates.
I hope all goes well at your next appointment.
best wishes
vivian

#3
Hello Giffy.
No one can predict how Parkinson's will progress. With the right medication most PWPs continue to lead reasonably normal lives for many, many years. It is important to be as active as possible (mentally and physically) and of course, to eat healthily. When you look at how medical research is progressing I think there is every reason to be optimistic, both from the point of view of finding a cure and of developing better drugs. Like the song says, you have to eliminate the negative and accentuate the positive.
Don't forget the Parkinson's UK helpline. A friendly, reassuring voice and sound advice is just a phone call away. Of course, there is always someone to talk to here on the forum.

Look forward to hearing from you...Chris.

#4
Giffy
Welcome to forum. I'm sorry to hear about your situation but glad you have found the forum. It can be scary when you read about Parkinson's. Six years ago when I was diagnosed I scared myself witless, cried for two days then hid from the condition for four years. This forum is full of gutsy people who are living through the condition. They are the finest source of support and advice and reassurance I have found.

I'm glad to hear that you are doing something to help spread the word about life with Parkinson's. I do some similar things and I find it helps me stay positive.

There are some really worthwhile things that people can do to help. Apart from the obvious and very useful donation of cash my favourite suggestions are :-

people can donate their brains to the brain bank (healthy brains needed as well as PWP brains) http://www.parkinsons.org.uk/research/parkinsons_brain_bank.aspx

volunteer to participate in research studies
http://www.parkinsons.org.uk/research/get_involved_in_our_research/list_of_uk_research_studies.aspx

Elegant Fowl

#5
hiya giffy welcome to the forum,im ali been dx for 11 years im 42 years old,sorry to here about ur hubby,like others i would say also it very difficult to work out how pd progresses,each person i have met with pd,seems to be different to the other in one way or the other.pd no mater wot can be scarey ,good days and bad days as im quite sure you will reconize by ur hubbys reactions to things.the forum is the best place to look for guindnece and surport,and i wish you luck,i also wish hubby good luck with is appointment in may,let us no how he gets on,fingers cross its not wot u think it may be.hope to see more of you around the forum x:smile:

#6
welcome Giffy to the Parkinsonian nutters club, im a nawty but nice welsh parky person of 18 years currently on stalevo and sinemet, as others have already said here everyones parkinsons is differant, we all have our own version of this medical nightmare taking over our bodies, yeh it is scarey not knowing whats aahead of us but if we all fight to the best of our ability, our paths thru the PD jungle will be easier especially with the help of this site and ofcourse the parkinsonians who frequent it. we are all here to help .........keep smiling, keep shaking, keep fighting !!
be safe Hugh aka welshbearuk ((hugs))

#7
Thank you all for your responses, of course it's obvious but it's still good to know you're not alone.
My husband is 67 now. Always been pretty fit and active - not athletic, but a walker and a gardener.
I will be reading on here regularly - thank you all for the useful suggestions. I haven't used the helpline yet, I just feel I will probably break down in tears if someone is really kind to me at the mo.
I think so far we've been kind of ignoring it, meds made vast improvements so maybe we've stuck our heads in the sand a bit.
Love and thanks to you all.

#8
Hello Giffy,
Sorry to hear of your news -but life goes on and you seem to be able to cope so far.!!!!