I am sick of feeling crap al the time. I was doing ok till about 6 months ago but I have little energy and just feel as though I am going down with something a lot of the time.
I was diagnosed 12 years ago but perhaps I have been lucky and my so called ‘honeymoon phase’ has come to an end.
I freeze and fall frequently which doesn’t help.
My meds run out before my next dose is due then takes a good half hour or more to kick in.
Fed up !
I’m sorry to hear that. I slow down before my tablets next dose which is frustrating. It’s sounds like you need to talk to your neurologisy/PD nurse about altering your medications. I hope it gets sorted out for you.
sorry to hear that. i am in the same boat but that I think is partly due to another medical condition which is notorious for feeling fatigued. Sometimes I find it hard to tell the difference. I do find it doing exercise makes a significant difference, and particularly Cycling.
I know how youre feeling i was diagnosed in 2013 been lucky its progressed slow but the last 3 months ive slipped to stage 2 had two serious falls broke ribs and nose went down hill fast diidnt shave or was eating all wrong food no sleep eventally my body collapsed wqith lack of sleep, Since then my meds have been kickig out at diffent times i have been going to bed at 7am so fatuiged slept in my clothes as couldnt take them off My wife had divorced me after 28 years of marraige the last years have been dificult she left me and cheated on me for 3 months and said she was leaving me becuase of my Parkinsons basically dumped me overnite which deveasted me had counsiing for my for over 12 months
Its been like walking through hell but as they say if your walking through hell keep going dont stop to look around
I found the way to deal with this disease is not simple but its about adapting
re meds i originally was on Stalevo and SinimetCR staeveo evry 4 hrs nitally cr siniment at night to help me get outrpf bed inmorn as im not sleeping right in bed by 7 waking and 12 Midnite sometimes totally off strugglingto move
I have had to adapt my meds over the years has the disease progresses
I was taking madopar at 5am back to bed to let it kick ibefore my first tab at 545 then 845 .1145. 245. 545 This was working upto 3 months ago but suddenly it no longer works and i struggled with off tme all day My nurse said constapation was biggest cause along with protien of any food i was eating especially meat and dehydration so inccreased fibre water and no protein or timed food its working so far
The meds ive movd timing forward 15 mins which seems to work its all -part of progression
just a few pointers which might help
s
Stalevo can be dreadful, I actually had to give up driving due to side effects.
I’d check out the first side effect before any thing else
Haven’t heard from you for ages sorry your not having a great time, did you ever consider dbs it worked very well, I’ve just had a spell where i kept on feeling weak ,falling over so i resigned to bed rest for over a week then had a word with myself and picked up starting doing some light exercises, checked my meds from Entacapone to opicaphone and things are gradually starting to get better. It’s been a long time now for the both of us, but keep fighting i know that’s easy to say but there’s still plenty of options review your medication with your pd nurse they .ight suggest something all the best gus.
I was the same till last year. I am on Duo Dopa pump and it has made a huge difference.
For me, taking anti-depression med is as important as my main med, if not more.
Sorry to hear you’re feeling so bad.
Have you spoken to your PD ‘experts’ to see if a change of meds might make a difference?
That’s interesting, I broke my ankle about 7 months ago.
I also have constipation but I’ve had that all my life. I only ever ‘go’ every three or four days, Sometimes longer.
I had DBS about two years ago , at first it was great but the movements got worse again and I have now been told I have disphasic dyskenesia which is near on impossible to manage .joy!
Ive been taking stalevo for 9 months and I can see that I really have declined in that time. I’d be interested to know what side effects you experienced.
Also I am getting a very variable response to each dose at present. How easy was it to switch to opicapone?
I lost power in my legs, just generally tired, needed to sleep all the time, it got so bad i gave up driving, 4 years later i applieed for my license againat the age of 72 i got it back, still driving my Kia Niro automatic today
I hope I can give somebody some hope for the future
Have a great Christmas xx
I’m only on sinemet morning and afternoon
Hi jjbxl
I was on Stalivo, for 5-6 years, started on 150mg x 4 times daily in 2014 (I was diagnosed in 2012, @31Yo. young on set Parkinson’s), Then, in 2015 i started having dyskinesia so changed the dose to 125mg x 5 times daily and started taking Amantadine 100mg twice daily to control dyskinesia,
I also started having mild compulsive behavior (money, sex etc), slowly my dose had to increase to the point that i was taking 125mg x 8 times daily, i started having mood swings as the level of med changed throughout the day. I was also having unrealistic thoughts, since last one year i am on duo dopa,
One more thing that you have to keep in mind that as my dose increased, some of the things that i was saying to people, i would not have said in normal circumstances, It removed the filter between my thoughts to what comes out my mouth.
What i found, that stalivo helped with the physical side of Parkinson but it also increased my brain activity, so anything that was bothering me, it became hard to take my mind off. Too much thinking with mood swings led to unrealistic judgments of the situation.
I tried opicapone, and my dyskenesia was awful. I didn’t stop moving for 10 Hours! I couldn’t sleep and felt awful. It has taken me a week to get back to feeling vaguely normal ( whatever that is)
Opicapone was awful for me. Violent leg movements for 10 hours, no cheep, felt dreadful.
constipation is something I struggled with in the early stages, I now take 1 or 2 cups of youghurt and bananas. I live in the tropics, so bananas are freely availablem, it helps
I just wrote a long post about the “cramp” I suffer from now & again & then I reread the title & see it says “I feel crap” … yep I too feel crap. Things like my health & my mood varies with me. Mobility is a big challenge.
Today is not a good day for certain. I am lurching from chair to chair using their backs as support. Yep crap sums it up.
Best of luck to you. Things do get better.
Steve2
