Hi everyone,

These days, my husband has a lot of fatigue and sleeps quite a bit. I realize this may be a side-effect of the Ropinerole as much as the PD. He has very limited energy and feels poorly most of the time. He does not feel up to socializing very much, or taking part in activities. What can I do to improve his quality of life? Apart from cooking dishes he enjoys and suggesting a movie to watch together, I am at a loss. I don't want his life to be just about PD. Is this a reasonable expectation, and how do I help him with this?

Thanks very much.

Wife, I do understand, as I could have posted exactly the same as you have.

I don't know how long your OH has been diagnosed, but when I see some posts saying how much people are still doing, I could curl up into a ball, or find that hut on a mountain and stay there.

I have decided, and OH agreed, that in the new year we shall seek further advice on his present condition and treatment options.

Perhaps this is what we should expect, 10 years after dx, I don't know. Having been dx at 47 was a blow, but his condition now is not what I expected 10 years down the line.

Sorry, this has hijacked your post, and is of no help at all, except to know that you are not alone.

This forum keeps me from tipping over the edge and going back on medication that I managed to give up years ago.

I am trying to be OK at the moment, for the sake of our daughters who are home for Christmas, but I know how hard it is to put on a good front all the time when inside you are hurting, worried and more.

Thinking of you.

benji

hi,

i find a little bit of fresh air every day really does help, perhaps your 0H could go for a little walk.
i go every day and it does help your morale, other wise you get in to a rut.
hope you find something that helps
goldi...

HI Goldi is right, gentle exercise such as walking is definitely benenficial, wont make the pain go or your problems disappear but gets you out of the house, take care, Carol

Thanks Goldi.

That is exactly what I encourage him to do each day, if he posssibly can.

Yeterday was a no no, he was just too bad. Today he went for short time.

Tomorrow, who knows!

Tomorrow, get folic acid and Vit B6/12 tabs in town and order broccoli extract tabs online to start taking in the New Year. Can't do any harm and may do a lot of good.
Happy New Year.

We have tried all the alternative forms of supposed help in years past, to no avail, so will not be wasting our money again on such supplements.

Thanks for all your replies.
I guess, more to the point of what I'm asking is: Where do you find the joy in your life? What do you feel passionate about that PD hasn't taken away? I would like to help him focus on the positive.
Thanks,

Wife

hi,

i find to get through the day try to have positive thoughts,it does help. i count myself lucky in a weird way, for eg, my sister in law fell down the stairs a while ago and she hasn't been right since possibly never will,she has changed personalty completely there is nothing they can do, then on another scale a firend same age as hubby has motor neuron disease and is in a wheelchair he used to be a keep fit freak now his body is giving up. so in that respect at least the meds work for our symptoms.
so today i will thank my lucky stars i have pd and not something else. i am fortunate i have my lovely family around me,they do get on my wick sometimes but hey doesn't everybody. my kids are my life and i count everyday i spend with them a blessing.sounds like i have come over all religous.
so to my long suffering family i love you one and all.
lets hope we have a fantastic new year...

To Wife,

You could have been writing about my husband, he does not have a lot of energy and does sleep quite a lot. His medication is mainly Stalevo and 1 Sinemet + a day.

My husband is nearly 76 so age must have something to do with it as well.

I don't know if this will help your situation but I find if we have something to look forward to it helps a lot. We do go on a few coach trips. We have recently been to a show in Brighton and to a carol/christmas songs concert at the Albert Hall. We also attended the local Parkinson's support groups Christmas lunch and also the Carers had their 'do' which we both enjoyed. Our next trip will be to 'Bluewater' in January. I ring in advance to book a scooter to hire for the day for my husband.
We never know if my husband will feel well enough to go, but we just take a chance on booking and keep our fingers crossed! So far it has worked out every time.
I do hope you can find some answers to your situation very soon.
Best wishes,
bb