Hello


#1

Hello I’m Dawn and my husband Garry who’s 41 was told he as PD in November 2017 it came as a shock to us and an emotional rollacastor. Still coming to terms with it and taking each day as it comes.At the moment his treatment isn’t doing much for him if anything seems to make him worse. I’m sure I’ll be using this forum a lot for advice and just reassurance for me and him that everything that’s happening is normal with having parkinsons…Thank u :slight_smile: x


#2

Hi Dawny81,
Everything you and your husband are feeling is very normal in the circumstances. It is a roller-coaster of emotions and will be for a while.
It takes some people some time to adjust to the medication and also it may need tweaking, either more or less.
Im 2 years in and still finding my way with meds. Get in touch with a Parkinsons nurse in your area or attached to the consultant your husband is attending. You may have done this already but they are invaluable.
If he doesn’t already, exercise of some form. There are also some groups on fb i find informative. Nobody knows better than people LIVING with Parkinsons.


#3

Hi Divine thank u for ur reply, yea it feels like we r backwards and forwards all the time to the hospital, Garrys consultant told him he doesn’t want to do anything with his meds as yet as his young? Just seems like he as to deal with it at the moment and is in so much pain all the time I’s that normal? I’ve read about some pain but it’s constant for him. I have today joined a few pages on Facebook, thank u again


#4

Hi again. I can understand the resistance to too much meds too early. Im on a low dose of dopamine agonist, Ropinerol. Im lucky that i don’t suffer with pain, just stiffness on right side. I guess the thinking is to hold off on strong meds as long as poss as there is a long way ahead of him.
Someone on here will know about pain management.
Think about diet and exercise, if not too painful. Maybe ring the helpline here, they have pd nurses who will have advice on how to reduce pain.


#5

Hi Dawny81, I’ve had PD for nearly eight years now and only on a low amount of meds, which is the way I like to follow. If they prescribe meds willy nilly I’d be worried that they are over prescribing for sure. Hubby has to be patient until a suitable medication can be prescribed to help him as much as they can, sorry don’t know what pain hubby is in, but as Divine 1 said best to phone the help line and get some advice for him.

All the best - Sheila


#6

Hi thank u both very much we have another appointment to see. We both understand not to go mad at the minute with meds so took the doctors advice and stayed on the low dose…He suffers more with pain than the tremors or tho this too never let’s up.Its so hard to watch him and not knowing what I can do to help…I’d like to say it would be nice to get back to normal but I know that’s not gonna happen so b nice to have some relief for him if just for a day or two Thank u both again n I will ring the help line xx