I write on behalf of my Mum who is a very strong ( and very lovely) lady who has tried to deal with several hurdles so far with Parkinsons.
My Mum is now feeling slightly "floored" - I think that is an understatement but we try to always be positive. I am sure all Parkinsons suffers have many "effects" to contend with just like my Mum, it's not a kind disease yet my mum feels hugely different in the evening than in the day?!?!
Mum openly will now say that the days are a worthless existence yet suddenly at approx 7pm she feels what can only be described as vaguely normal. The neurologist is unfamiliar with this so we are hoping for some help from someone who may have encountered this or solved it!?
We are very grateful for any help,
I am much better in the late evening and overnight than I am during the day. To such an extent that I build my life around the fact that I operate more or less normally in the small hours. Luckily I have now retired, so I can do what I like when I like.
Overnight I can reply to emails, write letters, complete forms, listen to radio, TV and music, arrange deliveries and so on. Whereas most of the daytime I'm more or less a zombie, and in much pain.
I'm 61, and was diagnosed in 2000.
Hi I sometimes tell my husband I wished he was as good in the morning as he is when going to bed . Sometimes think maybe it's because you are not as stressed about notbeing as able to face the every day things like you use to ..
I suspect it's related to my medication.
During the day I take Stalevo, which is Sinemet and Entacapone combined. But at night I'm just on Sinemet CR, without the added Entacapone, so it looks like the latter doesn't suit me.
I've suggested this theory to the PD Nurse but she just poo-poos the idea.
I am 63 diagnosed at 57 and at present enjoying the benefits of medication. Before starting medication I was terribly sluggish in the morning and it took me ages to get going. I improved as the day went on and felt "normal" in the evenings. There are daily fluctuations in the Dopamine levels. Best wishes to you and your Mum.
Just a suggestion although my husband has only ever slept for a couple of hours since pd diet can make a real difference to how the drugs work and it is worth trying to keep the proteins for later in the day. This doesn't work for everyone but some people can't eat fish and some others its meat, its worth a try but as said there are many people with pd who spend the nights doing all the jobs they couldn't do in the day.
Hello Bex, as others have suggested this is not uncomomon. Years ago, I was at my "best" in the mornings, but now quite the opposite. It takes me ages & much effort to get going in the mornings , but I often shower, tidy up at eg 4.00am . My neuro, who has a special interest in pd explained it thus : during natural sleep your body produces natural domamine. pd medication may cause insomnia.. So insomnia = lack of naturally produced dopamine, replaced during the day by pd meds , which may cause insomnia.. You get the picture?
Luckily for me , I , like RofS can accommodate to this inconvenient life-style. I really do feel for pwp who have young children, are obliged for whatevever reason to conform to a 9-5 regime.
I wish you and you mother the vey best
Nonsense! You don't REALLY think I'm sitting here typing at 4.15 am, do you? Truth is, I've trained the cat to do it.