I’m looking to connect PWP who were diagnosed in their 20’s, 30’s, 40’s or 50’s.
I’m 45. Symptoms started being evident at about 40.
I’m looking to connect PWP who were diagnosed in their 20’s, 30’s, 40’s or 50’s.
I’m 45. Symptoms started being evident at about 40.
Hi CC-I was diagnosed at 58 but notice symptoms about 2 to 3 years prior to that.
I was diagnosed at 48 and the symptoms started at 48
Diagnosed at 58 years of age, but knew I had PD a few years earlier. In retrospect I can now see that I had symptoms by the time I was in my mid to late 40s.
Only main sign was maybe stiffness and back ache, maybe 5-10 years before diagnosis. Not sure when I lost my sense of smell, but maybe as much as 5 years before diagnosis
I was 55 when I was diagnosed. I lost my sense of smell several years earlier, but poor handwriting for a few months is what prompted me to see a neurologist.
Diagnosed at 45, 3 years ago
Diagnosed 8 years ago at 52, but at 49 at the driving license renewal visit the doc requested a statement from my family doctor that I had no known neurological problems as I was shaking on one side. At 47, I had some tremors under stress. At the age of 53, the dat scan confirmed the symptoms. I think one side hasn't progressed at all, but this happens. I have a slight progression in nocturnal stiffness, I use only variable dose madopar (that is everything you need) according to the advice of JonhtPM and recently Levodo and obviously HDT Tiamina HCL.
Hello, My soon 43 diagnosed 2 years ago During a long period of doubt he didn't take any medic. As a consequence he was totaly rigid nearly fully paralysed. He is taking since one month now modopar and situation is improving a little. I try to convince him to take HDT as I read some favorable issues with it. What dose of thiamine are you taking daily? Thank you for your response. Jacques From Montpellier FRANCE
my dad was 55/56.... he is now 69
My brother was diagnosed at 58.
I was 57
I was diagnosed at 46, but I probably had a few symptoms in 1997 which was 5 yrs prior to when I was diagnosed in 2003. My symptoms were not swinging my arm & a drag in my leg, which I didn't put 2 & 2 together until I went to the doctor thinking I had carpel tunnel because my wrist was hurting & my handwriting kept getting worse.Unfortunately, it wasn't carpel tunnel.
Diagnosed at 47. In 2016
I came down with sudden onset PD at 41. Zero symptoms to full on left sided symptoms in under an hour . I am 48 now.
It is through you that I learned of FUS in Switzerland. It has given me much hope. Have you given thought to potentially stem cells in the future? I figure with FUS and eventually stem cells, I can keep myself taped together.
I wouldn't be eligible for trials because of FUS. I figure if I stay where I'm at (I'm still improving weekly) I won't need anything else. My surgeon believes I will not progress. I'm able to do everything I need to although still have mild symptoms and still take either 1 or 2 pills a day.
“Believes I will not progress.” Well that is amazing to hear! That said, what I’m about to share won’t pertain to you then but perhaps others.
A MJFF webinar on stem cells said that DBS precludes one from trials but most likely not from eventual stem cell treatments. I assume then This would likely then pertain to FUS as well.
For trials I assume they will not want any outside factors to influence results i.e. FUS and DBS. It is unclear to me if DBS will have to be turned off to get stem cell.
CC I I was also thinking that if/when C/L stops working then I do PTT FUS and then stem cells if needed. That’s the only long term strategy I can think of given today’s state of the art. I wasn’t sure if they would do stem cell therapy on someone who had PTT FUS but I don’t see why there would be an issue.
The MJFF video I listened to on SC did not mention FUS but the subject of DBS was brought up. We have the same mindset.
Have u done FUS?
Hi again, you are still improving? Improving due to the FUS 3 + months later? Wow. So interesting and amazing.
Yep still improving and expect to be for a year or more post surgery.
Wow. Amazing. You are already down to one or two pills a day. Maybe you will be able to reduce further or get off completely? How awesome would that be! Your sudden onset PD, omg the emotional trauma of that. That could bring on serious PTSD.
Thank goodness for this amazing FUS to turn things around.
I wonder if you were extra responsive to the FUS bc of your unique manifestation of PD?
Dr. Laurie describes me as atypical PD, esp with developing severe dystonic dyskinesia on any dose of C/L less than two years into drugs. I take 1 pill every other day and two every other day with plans to go to 1 a day soon. I swear my 1 pill days are better but I'm going slowly. Even if I need one pill a day I no longer get dyskinesia so it's ok. My dystonia dominant PD seems to respond esp well to PTT.
You have been through an especially hard time. That’s an understatement. Hearing how much better you are now and that your improvements continue, is a major spirit lifter. I hope to meet with Dr. Mischley as well. I’m presently working with Dr. Todd LePine. He recommends lithium oratate like Mischley does.
Would you mind describing the "severe dystonic dyskinesia" you experienced on C/L? What did it entail, and was it constant or just around dosage time/related to fluctuations in dopamine levels?
Mine was biphasic so every time I took a pill or one wore off I got myoclonic seizure like convulsions for two hours (total of like six hours a day). On meds my leg would twist and turn like I had CP and I couldn't walk - it was painful. I was completely housebound and my anxiety was through the roof waiting for the next set of convulsions.
@lenamm, thanks for sharing these details. I am going through something similar, though more dystonic than dyskinesic, but I think it's more or less what you're describing. Same timing, though doesn't happen every single time. Making some adjustments to dosage strategy and hoping to get this under control. I'm trying not to overthink this, as that creates more anxiety and makes it all worse.
Dyskinesia refers to the med induced quality - I had nothing that looked like normal dyskinesia.
After PTT FUS can you stop C/L altogether at some point? Or do you have certain symptoms remaining which require C/L? I’m on C/L now but if I could get PTT FUS now instead of waiting till C/L stopped working I would. Not sure why they make you wait until the meds don’t work. Would rather be tremor and med free.
It does not get rid of all symptoms, I know no one with zero tremor post surgery and there is a risk of complications. 70% of people that have bilateral surgery can stop meds completely but that comes with 58% having speech issues. Dr. J says it is dangerous to cut the tract until you have bad dyskinesia which shows normal function has been rerouted. The US trials will show if that is true or not. I am 90% better but I was really really bad before, so my 90% may not even be as good as you on meds. It is still brain surgery.
Lenamm thank you so much for sharing your own experience. It is precious and priceless. I pray there will come a day we will be freed from this disease.
“Cut the track”. ? “Dyskenisia shows normal function has been rerouted.” Would you mind explaining?
The 50% rate of speech problems is higher than with DBS I think.
The PTT is cut in the operation - I have no more pallidothalamic tracts in my brain. While L/C still works there is normal function is the tract , by the time dyskinesia occurs all normal function has been rerouted to other pathways and it is safe to remove the tracts permanently. Before that you could end up with deficits - which might reroute with time but still risky.
@lenamm, you are not alone. I got it too from day one. This is definitely difficult to diagnose.
Just FYI, I have not had any surgery.
How are you coping with it? Are you interested in FUS or DBS?
@cclemonade, I never really fully overcame it. and so, I have good days and bad days. My MDS has now put me on a drug cocktail and I no longer have short acting Sinemet. It's a challenge and a curse, this disease is and it changes your personality, your perspective and your outlook on life.
I am following your trajectory closely and I am curious and fascinated at the same time. Your response to the diagnosis is way different from mine because I spent two years trying to prove that my diagnosis was wrong. You seem to have accepted it and out to change the world.
I wish you the best.
I was 52 but had symptoms from around 50. Now 57 and going ok with meds apart from frequently falling at tennis.
I’m sorry to learn of your falls. Is it really rigorous tennis? I hope you can scale back so you can continue. I love dancing and needless to say, PD does not make for graceful ballet.
Not that rigorous- I try to be active at net but let the lobs fly over!
I was diagnosed this past February at 57 tho symptoms first appeared in 2017. I started to lose dexterity in my right hand. I had MRI and was told I had a crushed nerve root in my neck. Then I got frozen shoulder in late 2017. My right hand got worse so I had cervical disc replacement surgery in February 2020 after a second MRI and recommendation by a top-rated orthopedist. Surgery didn’t help. Started to lose balance in July 2020 then had compromised gait/right arm stiffness by November 2020. Noticeable muscle weakness started in January 2021 along with very slight tremors. Finally saw neurologist in February and received the bad news. I have no non-motor symptoms. Still can smell, no constipation.
Earliest symptoms started in 2015 when I was 50, then diagnosed in 2018 when I was 52.
I'm 55 now. I have a 25 y.o. who has Asperger's and still requires daily input from me, a homeschooled 14 y.o., and a 21 y.o. who works full-time and is about to start college (all 3 were 100% homeschooled). They all live at home with me and my husband (their stepdad). We married in 2016.
Respect to you! I am very much in favor of alternatives to government schools. I don’t know if you consider the concept of the autism spectrum as being a proper umbrella under which conditions like Asperger’s should be grouped.I know that the medical profession has moved away from that understanding, but I have to say that after observing the maternal side of my family tree it seems to me that a number of conditions like Asperger’s, autism, anxiety disorder and depression can be related. What interests me is that in addition there is also a history of Parkinson’s in that branch of the family. For a number of reasons that I won’t go into here, I am starting to think that chronic inflammation is the underlying cause for it all. Any thoughts?
I had written a long reply, and then my phone froze, and I lost it. Ugh. Short answer is yes! My son "recovered" from autism because I found doctors who treated it as neuro inflammation / gut dysbiosis. That's why I immediately went searching for alternative / natural remedies when I got the PD diagnosis. My dad's side of the family is littered with autoimmune disorders and (more recently) autism, but I'm the first with PD.
First symptoms at 47, diagnosed at 49, now 60.
Hi, I was diagnosed last year at 52 after a DAT scan which showed that I have less than 60% dopamine on the left side of my brain and less than average for someone my age on the right. My symptoms began about 3/4 years prior to that with a pain in my hip which gradually led me to walking with a slight limp and then a loss of power in my right hand and a degree of rigidity in my right arm when I walked. Prior to the DAT scan I had 2 MRI scans, an angio scan and a nerve test. I saw 3 neurologists with the last one diagnosing Parkinson’s disease. I now take 4 x 125mg Medopar and 1 x Sifrol and vitamin supplements. I visit the physio once a week, the osteo 3 times per year and workout every day. I follow WIm Hoff - breathing exercises and a cold shower everyday. Most days I feel good and don’t have any mobility issues. I don’t have a tremor. I’m still learning about Parkinson’s but determined to keep fighting against it.
Zuzue that’s very cool that you’re doing the Wim Hof program. I have his app and I want to get started but I keep trying so many different things I’m just shooting off in different directions like a lunatic LOL. But it is nice to hear that you feel like you’re I hope getting good results from it.
My husband was officially diagnosed at 63, but in retrospect, he had precursor symptoms when I met him at 43. He thought his lack of sense of smell was because he inhaled a lot of smoke as a firefighter. When I met him, I noted that he had a strange gait, what I realize now is that he never swung his arms, and he seemed unusually unflexible (stiff). His handwriting was always tight and small, in grade school a teacher said his handwriting was "atrocious" (makes me wonder just how early symptoms develop??) At around 60, he developed the masked expression; I thought he was just pissed off all the time. After that, more unusual symptoms showed up, but we never ever imagined it was PD. By the time he was diagnosed with Parkinson's, I was relieved; I thought he had ALS, a disease that killed a friend of mine within 18 months of diagnosis. There is a bright side to everything, I guess.
I have met more than one firefighter with PD. Chemical exposure?
Lots of risk factors for PD (chemicals, mercury, diabetes, being punched in the head), implies to me a breakdown/overwhelm of the bodies normal healing response. Been researching MSA like crazy recently, similar story there with studies on number of people with a history of chemical exposure.
Diagnosed 12 years ago when I turned 50. Started with a twitch in my left thumb.
Diagnosed 2015 aged 43 although I had been struggling with unexplained anxiety in social situations for a couple of years where previously I had been extremely outgoing. Also kept getting joint/tendon problems.
I take Sastravi (L/C/Entacapone) + Sinemet although struggle with balancing dosage at moment (125mg Sastravi topped up with Sinemet so that I can adjust as necessary).
Diagnosed at 52..
I was diagnosed 6 years ago at 51. I started going to doctors 4 years previously. Sent to all sorts . Frozen shoulder diagnosed and lots of physio but it was a student that referred me to neurologist. I described my symptoms perfectly but IT was such a shock . No family history. I dont have tremor but rigidity , fatigue, and poor balance etc.
I was diagnosed at 55. Looking back I had signs around 52. Balance, stiffness on my left side, typing. I’m 66 now.
I was officially diagnosed at age 53, dec 2019, but had heightened anxiety and constipation for years prior. Two frozen shoulders and tennis elbow were not considered related, although my father who also has pd, had a frozen shoulder too. Had a very slight rh tremor and lessened arm swing upon diagnoses.
Same here- constipation and anxiety- and my Dad has pd. He had something with his right arm where he couldn't lift above his head- now it's almost completely frozen.. My Movement Specialist said just because we have a parent struggling with pd doesn't mean we will get what they have in terms of poor mobility etc.. Every case is different.
I know several people at rock steady boxing that have frozen shoulder when they first came to the gym. I would say it's related to PD for sure.
I was diagnosed at age 55 in 2018 when my arm stopped swinging. Fifteen years prior to that I lost my sense of smell and started developing cognitive issues.
at your service. diagnosed 8 years ago at age 52, Doing pretty well except for neuropathy and balance. I have gba gene mutation. best wishes.
I was diagnosed 10 years ago at age 39. Had DBS 2 years ago, doing great (relatively anyway).
Wow, you had DBS 8 years in. Were you not responsive to CL? Has it enabled you to reduce or go off meds? I have two young kids too.
My neurologist kept me off levodopa for the first 7 years because of my age. I started on CL at the beginning of 2018 on 3 Sinemet per day. By the end of 2018 I was on 7.5 Sinemet per day plus a Sinemet CR at night. I was very responsive to it, the problem was it wore off very quickly. DBS for me wasn’t the instant fix that I was hoping for and I undoubtedly got worse before I got better, but there has been a steady improvement over 2 years and I still think that I’m improving. My quality of life now is probably the best it’s been since I was diagnosed, although I’m battling a bit with my speech which DBS doesn’t really help. Apart from DBS, I’ve found that cutting meat out of my diet has had a huge impact on my improvement and that was very evident after following a plant-based diet for a week or so. Managing stress levels, exercise and sleep all have been very important to me. I’m now on 5 Sinemet per day and nothing at night.
I was 53 and had symptoms for about 4 years prior and assumed it was a result of neck issues/pain. Are you taking any drugs yet?
No. Not yet. I am using medical marijuana at night to help me sleep. My tremors are worse at night and wake me up with my torso and head shaking.
I am not really familiar with this platform. Do you happen to know if there is an IM function? Are you in the US? There is a really promising Phase 2 clinical trial going on and they are recruiting people who have not taken PD specific drugs. Assuming my DatScan from Tuesday confirms that I have PD, which I do I'll start the trial on Thursday. I am happy to tell you what I know if you are interested.
Visited cardiologists, internists, urologists and surgeons until finally a young locum doctor sent me to a neurologist. Diagnosed in less than 10 minutes when I was 55. But I finally had the answer to all my quirky symptoms that had started 10 years at least before. The c/l worked, phew! It gave me a few years of relief. I almost got my long lost coordination back. Now, I am 61 and looking seriously at the FUS Ptt and/or stem cell therapy.
10 years of symptoms and all those specialists....what a draining experience that must have been. Is the CL no longer working? Only a few years of relief, I’m sorry. But real stem cell therapy for PT is not yet available? What form of stem cells are you thinking?
Did you see my post about the stem cell trial at Mass General? They are looking for participants for a phase 1 to create stem cells from our skin cells. For Phase 2 they want to use the pluripotent cells created in phase 1 so getting in on phase 1 is optimum. They did one full trial successfully in a retired doctor with PD.
I called and talked to them. Since they already have done the full process successfully, I was interested in participating but I’m not a candidate bc I’m not in C/L
I have recently learned that there have been trials in the UK already.
I contacted the Mass General group and they said the trial would be using local people only, so I was not a candidate. The c/l works but for only a couple hours now and the in between is uncomfortable. Looking for solutions but also trying to gracefully accept my diagnosis.
I didn’t know it is locals only. When I said I’m in New Jersey they were okay with that. I guess that’s close enough. The man I initially spoke with did say that there is a trial getting underway at a CA university. I asked if it is San Diego and he didn’t directly respond.
Have you tried medical marijuana to ease discomfort?
I was diagnosed at 49, 5 years ago. In retrospect, symptoms were quite strong 5 years before that, and arguably as early 19, when I had to leave music school due to (at the time) mysterious and undiagnosable neurological problems with my hands.
Diagnosed when I was 43, but symptoms started 8 years before. It's now 9 years since my diagnosis and I'm going strong.
Diagnosed last year aged 63 after approx 6 Drs told me NOT Parkinsons a Consultant said Yes Parkinsons.Noticed symptoms approx 4 years earlier starting with a dreadful frozen shoulder.
I edited my post to include 20’s & 30’s. I’m sorry to have excluded anyone in that category before.
Dx’ed when I was 52, but had symptoms at least 10 years prior.
I was diagnosed at age 48 about 6 years ago and while my PD has progressed, I'm still able to exercise daily and keep my job. I have a 16 year old son that keeps me going too. With God's help and determination, I keep a positive attitude. It's not always easy though.
6 years in and you are still working, that is uplifting to hear. I wonder how you handle the stress, anxiety of it. I want to work but I need to improve my sleep and anxiety management or I can’t.
I think that it helps keep me going. Luckily I work in a fairly low stress job. I guess I’ll keep working while I can. How do you handle your lack of sleep now?
Coincidentally, I slept last night! I used a marijuana gummie which helped and I had a low tremor night. Hopefully I can sustain this.
Diagnosed at 42; symptoms started around age 40. Am 44 now.
It seems a lot of us were quite young.
Diagnosed at 46
Had symptoms in mid to late 50s, about 56, and diagnosed at 60. (Father diagnosed in 60s.) Is that close enough?
Cc, I was diagnosed at 49 , almost 9 years ago , but in retrospect there were signs and symptoms at 46-47. Karen
Hello CC-lemonade, I was diagnosed at age 46, that was 16 or 17 ? years ago. I started having symptoms around age 40. I had DBS in 2013.
Are you looking for some specific information? or just curious?
You were diagnosed at the age I am now. So, you have been in my shoes. Did you keep working? I want to connect with other PWP who are diagnosed young or relatively young bc firstly, it is nice to know I'm not alone in my young onset and our needs and remaining lifespan are very different than those who are older. And those who are diagnosed at a younger age often have greater interest in and hope for disease slowing and repairative treatments. May I ask about your DBS experience? So you had it about 8 years in to PD and about 8 years ago. I am tremor dominant. I think that DBS or FUS is highly likely in my future.
I believe someone said you can't have FUS if you've had DBS. In my opinion, I think FUS helps a lot more than DBS. So I'm sure you will do significant research on both! Also, I worked for 10 yrs before I retired at 56.
A few days ago I found a post about working and read that you worked 10 years. I was so elated to read that. I literally put it in my “positive notes” I keep to read daily to uplift and motivate myself. Would you mind my asking what industry you were in?
The other two ladies were teachers. I can’t imagine teaching with PD.
Have you heard of Lisette Ackerberg? She was in a MJFF 360 video. Diagnosed at 50, 79 at the time of the video. She has dyskenisia and freezing but she’s had PD for 29 years!
Are you considering FUS?
Hi çc! I worked in the financial department for a division of what used to be General Motors. We got bought out in 2007, which ended up being a good thing. I had to do a lot of analysis so I started getting a little overwhelmed. I was then able to concentrate on trying to do what was best for my health (mostly exercise and researching). In 2008 I was also diagnosed with breast cancer in both breasts so I had a double mastectomy. One of my Rock Steady friends said she didn't think someone could get 2 bad things. A couple of years later she was diagnosed with ALS.
I've just recently thought about FUS, but I would need to do a lot more research. I've basically only read what's been on this forum which have been improvements. What happens if they hit the wrong spot? What % of cases don't work and make things worse, what are the qualifications to be able to be considered for the operation? I asked my husband if it would be worth $80k for me to try it. He said, heck yes. So to answer your question, yes I've considered it but not enough yet to find out the answers. Partly because I'm scared because it's so new, but who wouldn't be? And partly because of Covid, it's put several people in a holding spot. I just passed the 10 day mark from my 2nd shot.
Hope you're doing well.
Keep fighting!! 🥊
Hello. I was diagnosed at 45 but had symptoms start at 40. I just turned 50 in December.
Diagnosed at 38, now 45.
Hi CC! I'm 69, diagnosed at 59 after developing tremor at 57. However, I have had symptoms since I was a child, including constipation, loss of sense of smell, shoulder issues, handwriting... I believe I kept the disease at bay for nearly 50 years by playing huge amounts of high-intensity squash. I take 5 mg of ropinirole and one or two sinamet per day. I'm on basically a high fat low carb carnivore diet which I think helps Best regards, Phil 2bats
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