levels of PD

[McPam]

I have been recently diagnosed with PD and have symptoms on my right side. I understand as this disease progresses the symptoms will spread to the other side of my body. For those of you that have had this disease awhile, how long was it until you noticed symptoms on your other side?

[JAYNIE]

I was diagnosed in 1998,and it is my left side, and my right side is still okay, so no one can put a number on it.

everyone is different !!! keep using your good side, and exercise also.

actually my left side is much weaker, but I can still play the piano etc. and do my art work.

good luck and have a positive attitude !!!

[McPam in reply to JAYNIE]

I have started an exercise program and want to stay active as long as I can. Thanks for sharing your good news. I like to knit and weave...so far I can still do both. I just don't have much endurance, especially for walking a distance or standing for long periods.

[Norton1]

McPam

I was diagnosed eight years ago with symptoms on my right side. In that time since then the tremor has migrated to the left side, but appears to have stabilised. I can still make my wife a cup of tea and take it to her without spilling. Compare this with my right hand where a cup of liquid spills out immediately, even with medication.

Judging by Jaynie and me, you've still got many good years ahead of you. Enjoy life!

Regards

Norton1

[McPam in reply to Norton1]

Thanks for sharing...I am hopeful that I can keep active. I get real tired at times, but am fortunate I retired 5 years ago, so I can take a nap when needed.

[1shakey]

Hi Mcpam, they say it will progress , but how quick is in some ways I believe controlled by you. I say this has I have had PD for just over fifteen years on my left side and it is still only on my left, the only thing I have noticed lately is that when I are due for my meds if I'm late my right toes start to cramp up. We are all so different with our PD but I think you have to play the mind game with it all the time. I no that one day it will win but I'll make it work hard for every little win that it gets and as I say fifteen years on I'm still driving big trucks full time, don't get me wrong it's not easy in fact it would be easier and less painfull to just give in but no matter how I feel I'll fight it as long as I can. At 55 yrs old I'm not ready to quit yet. I'm lucky if got a loving and careing wife who helps to keep me strong even though I no she struggles some times to understand were I'm at. So don't worry about when just think about how to try and bet it. Good luck don't give in.

[Marche in reply to 1shakey]

That's what happened to me my left has been my weakest since I was 26 and I wasn't diagnosed til 2011 with PD and was put on carbidopa/levodopa 2 tabs 3x daily and I went off of Tramadol for pain recently by my new MD. It wasn't long and my right foot toes curled and cramped up so painfully. I had a seizure...now In wheel-chair waiting to see new Neurologist because the one near me moved...plus I had to move back to Parents...My Dad was diagnosed after me 75 yrs. taking care of his 50 yr. old daughter. It's the Blind leading the Blind here !!!

[McPam]

Glad to hear that yours has not progressed. That is my goal. My symptoms started 3 years ago at age 58. I have started an exercise program and want to stay active as long as I can...the only thing that gets me down is very low energy...very tired.

[Peaches]

Hello. I was diagnosed three years ago and I find that my knitting has been very good for me. Not only do I not tremor when knitting; it also keeps my mind active and challenges my brain. Keep it up!

[McPam in reply to Peaches]

I love to knit also....but I find my leg/foot spasms really bothersome when knitting...I want to be relaxed to sit and knit...but i am still trying. I weave also...this allows more body movement...so keeping my hobbies alive.

[honeycombe3]

Hi there,

I was diagnosed (dxd) 10 years ago with symptoms on my left side. They are still left-side only & have gone through phases of severity - from virtual immobility & continuous pain to today where with the right balance of meds & therapies means that many people do not know I have PD. The main problem with PD is that it is unique to each individual: no two people will respond to meds in the same way, there are no definite pathways of development/regression. This site will give you support from fellow PwPs so welcome & please remember 'you are not alone.'

[McPam in reply to honeycombe3]

thanks for your input...very encouraging.

[joe45 in reply to honeycombe3]

Hi honeycomb3.

I'm a bit like that at the monument as to mobility cause I'm trying to taper off neupropatch and it's not nice I can walk but carefully but it's cause I fell 7 times over few months and it was defo the patches so now I'm so frightened of falling again, I hold on to everything in the hse and really I don't need to , i think my minds overtaking !

[joe45 in reply to joe45]

Ignore that first part that supposed to say moment not monument. !

[bicyclingwithpd]

Hi McPam,

I was diagnosed with pd in November, 2003. and am 67 years old. my main symptoms are loss of balance in walking, and slowness of movement. I do not have tremors (yet, anyway). my predominantly affected side is my left side. in 2010, I had DBS surgery and that reduced my shakiness and the amount of meds I have to take to stabilize my walking. but after almost 11 years after diagnosis, my right side is still for the most part unaffected. so it isn't necessarily true that once side's affected is a harbinger of the other side being affected. I can't say for sure, but back to the DBS, they set the amount of electricity on my right side at one certain voltage and haven't changed it in 4 years, but as for my left side, they are constantly adjusting the amount of voltage. so I'm guessing that means my right side is relatively stabile.

I hope that helps.

Ken

[bigmama53]

I was diagnosed some 10 years ago and it only affected my left side but I am starting to see changes now on my right (not very noticeable). However, you must bear in mind that PD and deterioration progress differently for each one of us so you really shouldn't use other PWD as the yardstick

[Susie01]

I was already bilateral at the time of diagnosis, though it is still worse on the left side.

[arwenmark]

My husband was diagnosed in 2012 because of Balance but he already had tremors on left side mainly but very quickly spread to his entire body, both his arms and legs tremor and if you rest your hand on any part of him you can feel tremors. Under stress his head will tremor also.

[quirkyme in reply to arwenmark]

how are you and your husband doing? Sounds like a lot of progression in 2 years. Did he have it, do you think, before diagnosis?

[arwenmark]

I am sure he did have it before the diagnosis, in fact a few months earlier I saw him outside and under stress and saw the head tremor and I mentioned to one of my sons then that I wondered if he could have Parkinsons. When he first went to the MDS he put in his notes that it might be one of the Parkinsons Plus syndromes but for now he is still saying PD.

[bmakla54]

Hi

I was diagnosed in 2007 but I had symptoms from 2005….I was misdiagnosed then with essential tremor. My left side has always been the side most affected…..I am an artist and I paint and also make jewelry. I have recently noticed a slight shakiness when I draw with my right hand…..not a tremor, but my hand is not completely still…..I just had revision hip surgery and my tremors are more noticeable ……when I can I am going to start exercising again because it really helps….

[--Ton--]

Please know that everyone progresses differently; PD is quirky. For me, it was seven years before it progressed to the next stage, then three years to the next.

[pingopenguin]

Hi,

It is very normal for a pd sufferer to have a "weaker side".

If you exercise always add 1 or 2 extra movements to your weak side.

IE 10 Ankle strengtheners on the good side 12 Ankle strengtheners on the weak side

10 shoulder rolls on the good 12 shoulder rolls on the weak side.

It may help to keep the weak side better in general movements, but no guarantees !

[ancee]

I have had pd for at least 10-11 yrs. So far it's still on only the left side.

[emeditator]

I find all this interesting because one Neurologist felt I did not have PD because my symptoms were not bilateral. Then I went to an MDS who thought symptoms were from a medication I had been on 13 years, tapered off that. I had some decrease in tremor but my balance is worse. When I asked if he felt I did have PD, he said he wasn't sure now. I don't know what the next step is.