I know we are all different and I'm sure this is addressed in many studies, but I have three questions for those of you who have symptoms on both sides of your body:
1. Approximately how long was it between the onset of symptoms on one side of your body and the onset of symptoms on the other side?
2. Are the symptoms on the first side more intense than those which developed later on the second side?
3. If the symptoms on the first side are worse, how much worse are they?
Again, I realize that we are all different and that experiences may vary significantly. My symptoms are exclusively on my right side right now.
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jimcaster
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I just asked my husband this question and seems back in 2012 December whilst cooking for Christmas, the first tremors appeared on the right hand. They came and went when under stress, but mostly not consistent.Dx in 2015 as tremor more consistent and stiffness in body and lack of coordination on both sides but worse on the left.
Fast forward to now, some lack of co ordination on left hand side but no tremor. Tremor slight on right hand but can still draw, cook etc.
PD nurse says the Parkinson’s is on the left as his elbow and wrist cogwheel.
He says he’s never really noticed it going from one side to the other! Perhaps because the difference between left and right side is minor.
I’m similar age to you, was dx in Jan ‘16 though had clear symptoms for 12 months by that time. Initially bradykinesia and some cramping though by the time of my dx I had left side tremor in hand. I’m on Madopar and Rasagiline and take B1 plus mannitol in morning coffee. Standard stuff really. I’ve basically been fit and well and coping fine but in the last 6 months (and it last here comes the answer to your question!) I’ve started to experience R side tremor, mainly in hand, usually when tired or if I’m coming off dose. And so the bilateralism starts five years in... Pretty much on cue I guess..?
5 years is a popular mark for bilateralism and for healthy, active, exercising folk : ~10 years* before the majority responds “quality of life declined” to < less than good ( L. Mischley* ). Let’s work to be the positive deviants on this research/graph!
1. 3.5 years, 2.yes, 3. Post PTT my first side is worse but it was worse pre surgery so to be expected, both sides are pretty darn good now - no complaints.
Thanks for sharing, Lena. I believe you are one of the unique people among us who will be asked a lot more about symptom REGRESSION than progression! I'm delighted that your second PTT went well!
Pallidothalamic Tractotomy. Google Pallidothalamic Tractotomy or SoniModul Clinic or Dr. Daniel Jeanmonod. It's a unique form of Focused Ultrasound treatment for Parkinson's Disease.
Search this site and/or go to the SoniModul website to learn more. In very general terms, you are not considered as a candidate if medication is still working well for you, but there's far more to it than I can easily summarize. If you're on Facebook, there's a great group to join called "Focused Ultrasound for Parkinson's Disease." Join that group.
My first symptoms began on my right side, tremor wise, although I had many of the other symptoms associated with Parkinson’s but primarily the majority of my weakness and tremor in my arm has remained on my right side for the past 15 years. Given how long I have had it, I am almost expecting it to affect my left side but it remains strong. I don’t know if this is “normal”, but I’d like to know if anyone else has experienced this.
I remember when my Dad had PD, the Dr. said some people never progress to the second side. He did. I am also progressing to second side now, five years in.
I don’t know why I have done so well, but I believe it is because of how I’ve taken care of myself since my symptoms began. Super clean diet, exercise every day, a variety of supplements and even cbd and related products. Positive thoughts and attitude regardless of how rough my day is and I do have many. Also, keeping busy and keeping it moving is a must. Lots of brain games and lots of research has most certainly been helpful. I put a lot of focus on my gut health as well. I also have helped raise my three grandchildren, they practically lived with us while their parents worked and they have kept me moving and I attribute much of my success to them. The best advice I have is “move it or loose it,” as the diagnosing doctor told me, advice I heed every day. Best of luck.
I hate to rain on everyone's parade (and no offense intended), but I suggest that K1I2T3 doesn't have the kind of PD that you or I have - 15 years with "PD", taking 1 c/l a day, and doing fantastic!
What kind of PD do you think I have?! I was diagnosed by seasoned MDS, had a dat scan to confirm and I take 3 sinemet pills a day, not one. I’m just blessed I guess but I do have Parkinson’s, no doubt.
A rare/anomalous kind of PD or a misdiagnosed kind (e.g., it is not PD).
"I was diagnosed by seasoned MDS, had a dat scan to confirm and I take 3 sinemet pills a day, not one. I’m just blessed I guess but I do have Parkinson’s, no doubt."
Oh, I got the "1 pill", from what you said in an old post:
"Maybe I am an anomaly but I’ve been able to reduce from 6 pills a day to less than 2 over the past 10 years and some days I can manage on 1 pill. "
I presume the "less than 2 pills a day or 1 pill a day" didn't work out for you (but still 3 pills a day is quite good!).
You are indeed blessed, to not have the kind of PD I have!
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I think what is often lost in discussions like this that everyone will have different inherent progression rates, and that whilst you can possibly slow those rates (or speed them up), comparing indivuduals is futile. One person could do all of the best practice things and still be wheelchair bound and suffering from dementia after 5 years, whilst another could do very little besides take CL and be doing ok after 15.
After all, we all get PD at different ages, with different duration between first symptom and dx and different severity at dx. Only makes sense that progression rates will differ also. I bet there's no shortage of people that have had dying neurons but died of something else before physical symptoms showed up. Their 'progression rates' were even slower.
But yes, 15 years with symptoms only on one side is quite the outlier.
Thanks for the support, yes we are all different. I’ve met many PWPs with very different stories. God is good though, I trust in my faith and give my upcoming rough day, and most every day is rough for me, over to Him each and every morning. Maybe that’s why I’ve managed to handle my own with this disease. Just because I haven’t progressed faster or whatever, doesn’t mean I don’t experience many of the other PD symptoms. I’ve just worked hard all these years to keep the PD at bay, maybe hard work really does pay off. I don’t think I’m so much of an outlier but a maybe a success story.
this difference had already been detected by the my dat-scan, in my opinion these “anomalies” should be investigated by the research and could lead to interesting information on the causes given that the body and lifestyle are the same.
Diagnosed two years ago with right hand tremor and mostly right side symptoms. A year ago a very slight tremor began in my left hand, which has progressed a little, but not very noticeable. Rytary helps all my symptoms except doesn't seem to do anything for tremor. Just has a DAT scan that was virtually normal two years ago, but showed some progression this time. I do have memory and focus issues.
8 years ago my pinky finger was triggerring. Maybe not related to Parkinson's. It just disappeared after a month and I went back to normal for the next 3 years.
First sign of symptoms and tremor was 5 years ago. Diagnosed 3 1/2 years ago. Remains on my right side only.
According to the neurologist I have not progressed since I first saw him. At that time he gave me a grim picture that both sides will be affected within 3 years. Now he wants to see me less often since I'm not progressing quickly.
Still in the Honeymoon Phase (Diagnosed 4 years) w Unilateral Symptoms. Not to interrupt but In addition to this interesting line of questions, I wonder if some people manage to live their entire life without bilateral symptoms. Perhaps we will find out, here!
Jim, I was diagnosed going on 9 years now with severe symptoms on the left side. Just within the last year ( 8 years in), my right side is now having symptoms. Nothing as of yet as painful as the left . A lot of numbness and unable to use my hand at times. But i know it’s a matter of time for it to get worse but remain positive and try to continue exercising and keeping my body healthy. Karen
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