Hi all I was dxed 2015 maybe had it since 2013... It was all right sided.
In the past 2/3 months my left side has been really effected in weakness and tremor to the degree that I struggle with the most mundane tasks like wiping my bum.
When the medicine is working my body is 80/90% but of course we all have down time.
If you have parkinson's on both sides how fast did take to move to the other side?
Thanks Trev
I do believe that Parkinson's affects both sides of the body though I do not know how quickly. This information was provided to me as the mother of a young man diagnosed with early onset. Because his stiffness is only on one side, they are checking into other things ... we are waiting on pins and needles for the results, actually.
I was dx'ed age 35 now age 37 probably had it since the age of 33.
I am so sorry!
Anyone else?
PD normally starts on one side, My husband's did but by the time he was diagnosed it had moved to both sides. No way to tell how fast that will happen to any given individual.
Mine started on right side & didn't have symptoms on left side until 10 yrs into it & it's just tremors on my left, rigidity & slowness on the right.
Stanny7 For many people, Parkinson’s starts on one side, and then it spreads to both sides for some people. In my case, it started on my left side. I had resting tremor, that got worse and worse. I got cogwheel rigidity and stiffness in both my left arm and leg. Then, after about 2 years, it started on my right side. I got cogwheel rigidity in all four limbs, and stiffness. Then I had tremors in both hands and neck. I was then diagnosed, and now have many autonomic system symptoms too ( swallowing slow, constipation, urinary etc.) . I have had this PD for about 5 years, all total, now. Each person progresses differently. It depends upon how much neuro-degeneration has occurred in the substantia nigra part of the brain and the rate of diffusion and location. Some people are fortunate and don’t have to deal with a lot of progression. The levodopa/Sinemet has been a great help for me. My motor symptoms are controllable, for the most part now, when the medicine is working.
Thanks for the detailed reply, Does if effect your strength at all?
Seems like my story tbh.
My strength is still good.
Thanks last question!
My strength is good while 'on but when 'off' I struggle... Are you effected much when in 'off' state (strength etc...)?
Mine started on the left side, and gradually began affecting the right side after about 7 years.
Anyone else had an issue with strength?
Really bad when I'm off. I feel like superman looks when he's near kryptonite!
Thanks, least I know i am not the only one affected.
Does it affect daily routine tasks?
Yes very much. I try to schedule things around when my medicine is working best.
Yeah that's pretty much me in a nutshell the last 3 months really depending on my meds when meds are working it feels so good.
Does your pd affect both sides of you?
I read that you have dystonia in your left hand, I have dystonia in my right hand it claws up is yours the same when off?
How old are you if you don't mind me asking as I seen you said you got a dx of YOPD the same as me I was 35 when dxed now am 37.
Yes to my left hand clawing up. Both my feet do it too but my left side is worse. I'm 47 right now and only diagnosed this year. My motor symptoms started with the dystonia in my left foot in 2013. I had run my 1st full marathon that year so I blamed it on the increased mileage I was running. But over the next few years things got worse. 2 years ago it started involving my right side too and I started having crazy muscle spasms in my left calf and arm. I've never had any tremor, do you?
Nope never had a tremor either... But seems like when I am off now my left arm tremors/shakes slightly not sure if that is the strength issue I first asked.
Does your hand look like this when 'off' all the time? This is a picture of my hand.
When your off does the strength thing stop you for instance getting dressed,washing,cleaning up after you've been to the loo (I know TMI but this the one thing that is really bugging me) etc...?
Mine first started in my right hand then moved to my right foot 2 years after seems like it's effecting my left side.
Seems we are very alike with out PD.
It does seem like we are very much alike! My hand is not quite as closed when I'm off. More curled except for my middle finger which kind of curls up. Kind of looks like I'm trying to flip someone off unfortunately! During the day when I'm off I can still do those things just not as well, but 1st thing in the morning is really bad. I can barely get out of bed and go to the bathroom. Then I take my medicine and wait. If I have to shower and be somewhere I make sure I get up at least 2hrs before. I wonder if your med dose is high enough. Before I was finally diagnosed I had gotten so bad that I could barely walk with a cane and I had a hard time doing anything!
Here's my med scedule
10am - Stalevo 100mg and Disperable Madopar 50mg
2pm - Stalevo 100mg
6pm - Stalevo 100mg
10pm - Stalevo 100mg
2am - Sinemet CR 100mg
I do have quite abit of off time as the on time lasts 2-2 1/2 hrs.
What's your meds like?
I take sinemet 25/100 and 10/100 together at 7am, 11am, 3pm and 7pm (so 800 levadopa total a day). I also take NAC and citicoline but I'm not sure if they help. I take turmeric/curcumin 3 or 4 times a day and that one really helps with pain. I've added a little mucuna in the last month because my levodopa dose didn't seem high enough. I know 800 a day seems high but it takes a bit to have any effect on me. My Neuro tried to switch me to the controlled release a while back to help my off times (a higher dose than I was on) and it was like I was taking nothing! It was crazy. Within 1 day I couldn't move it was so bad. So she switched me back. Adding the mucuna has definitely helped. Before I had a lot more trouble with day to day stuff.
So i have abit room to play with since I am on 500 a day.
I don't see my Neuro until May! But see my PD nurse in December but can ring her to hopefully change/add my meds.
Hopefully they sort my meds out I hate saying this but as each day passes it feels like i am fighting a losing battle and dying a slow death... As I can do less and less every day,week,month.
All I do atm is lie on my bed and watch YouTube etc... on my tablet... The furthest I get is the supermarket or visiting family.
3/4 years ago I used to work 40+ hours a week, have a very social life going out with friends, going out for meals... All stopped!
Sorry for being a Debbie downer just needed to vent because it feels like life ain't worth living atm.
Do you still work? Get out and socialise?
please vent anytime you want with me! I know how you feel. I used to be the produce manager at a local grocery store and I actually loved it because it was a busy job. You only sat down to do paperwork. I also loved running. I've run multiple half marathons and one full. I was always doing something, I've never liked being bored. I had to leave my job before i was diagnosed because I was so bad. It's been really hard. I try to get out and socialize but everything makes me wiped out. I tried to go back to my job just part time (I was surprised they took me back after I was diagnosed) but I only lasted a couple months. That made me feel even worse after they were great enough to take me back.
Unfortunately I think we have the worse kind of regular PD. People that are tremor dominant seem to be less severe and progress slower from what I've read. But we still are better than other types like msa or lewy body.
Yeah without sounding condescending I wish all I had was to deal with was a tremor.
Responding to L-Dopa means we don't have MSA,PSP or CBD?
There's always been that little worry in the back of mind that my diagnosis will be changed ever since I was dx'ed in 2015... But then I have read that the age to get those kind of Parkinson's Plus diseases is 40+.
I think so. I know some people have a really bad tremor that makes it hard to do anything and some have tremor plus a lot of the symptoms we have. One thing I don’t like is when it’s said that you need to exercise then you’ll feel a lot better. I’ve tried and I really wish I could but it makes me much worse. I’d give anything to be able to run again. I loved running.
Yeah I used to enjoy a game of 5 a side with my mates.
Yeah I know what you mean about exercising when I do anything physical I feel worse afterwards.
I used to like gaming aswell but can't do that much the days.
So how do you spend your days?
Reading, on the internet, watching tv. Pretty boring. I am blessed that I have such a wonderful husband. He has been so supportive through all of this. I don’t know what I would do without him. I feel bad because this has really changed his life too. We have 2 adult children and are just getting to the point in our lives when we should have been getting out and doing more. Plus the financial issues. Medical bills on half the income isnt good. I try not to think about the likely future of being a real burden to him.
Yeah I have a brilliant partner that puts up with a lot from me she does a lot for me I'd be lost without her.
But I think she has her blinders on and thinks I am in better shape than I am.
Guessing since you pay for your medical bills you are from America? I am from the UK so we have the NHS which is a godsend although waiting times to see doctors can be quite bad.
Quick question... How long does it take for the meds to get in your system? First thing in the morning and after that?
Mine varies from 30mins in the morning then meds after that can take 15mins/1hr to kick in.
Reply
Usually about 45min to an hour. The morning dose always at least an hour. That's interesting that some doses work faster.
Yes I'm from America. I live in North Dakota.
Do you take your meds away from food? Food really interferes with how my meds work.
Yeah I try not to eat food around tablet time... I heard protein affects it greatly.
I feel very tired and weak today hardly slept also feel very dizzy.
Do you sleep fine?
Going to ring my Parkinson's Nurse tomorrow see what she suggests.
I don't sleep well either. I have a hard time falling asleep and staying asleep. I haven't really found anything that helps. I've noticed for me any red meat really makes my meds not work.
Yep same for me when I eat red meat it messes me up.
Also the same I cat nap an hour at a time can't remember when the last time I just slept through until the morning.
My muscle weakness in my left arm came back with avengance today at 5 pm my time just took my tablet laid down then it was ok when it gets like that I am sure where to put myself.
Not sure what could be causing it is it my Parkinson's or something else? My GP seemed to think it is my Parkinson's my PD Nurse seemed to think it wasn't when I rang about 3 month ago it hasn't eased at all in those 3 months.
Bah I have had my little rant for today.
Is what i describe as strength is muscle weakness? I have read muscle weakness happens in PD
I think the muscle weakness is PD because it got bad for me at the same time I started having the crazy muscle spasms and increasing stiffness. Does yours get worse the longer you do something? Like standing, I’m ok for a few minutes but the longer I stand the worse it gets. I try to avoid standing in any lines these days. Or trying to lift something. Everything feels heavier than it should to begin with but then it gets worse the longer I hold something. I also think it’s the PD because it’s always bad, but much worse when I’m off.
Yeah I avoid standing in queues also and avoid over crowded places... Yep I guess it does, it went off before took my tab had a 1/2 hr nap woke up all good! Frustrating.
TBH I've had an awful day na scratch that make it a week... I woke up thinking what's the point.
How's your day going/been?
Not to bad until this afternoon. We had a potluck at church for pastor appreciation day and I ate to much. So my meds didn’t work the best this afternoon. With food I notice it’s not only what I eat but if I eat a lot in one sitting.
I went to bed 2 hrs ago woke up with a sort of nightmare, like in I was asleep but awake!
I can't get a decent night sleep which in turn is making me feel worse.
I hope you got back to sleep. And hopefully I can fall asleep!
Had a great nights sleepwoke up twice but got 10 hrs... How did you sleep?
Thought I was going to have a good day boy was I wrong... Just feeling weak all the time struggling to get out of chairs,stand up from the toilet and to top it off I have an awful pain in my left hip.
Managed to visit my dad and pop into town suffered when I got bored as was going into off mode laid on the bed for a few hrs... Just starting to feel a bit better.
Rang my Parkinson's Nurse she said that maybe I could do with some physio therapy so been referred dunno how long that will take... Not sure on how it will help when I'm in my off periods... We had a chat about my meds she said she didn't want to change them since my Neuro has just tinkered with them.
And that's where I am... Frustrated and sad at the same time...
I messaged you instead. I figure that’s better than having a long post for chatting.
That sounds like my story. Dx 2.5 years ago and almost incapacitated 😢
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