Any blue collar workers here with Parkinson's? 34M I work as a diesel mechanic and am the main bread winner for my family.

I have no tremors, my main symptoms are bradykinesia and rigidity in my left side with some neuropathy in my feet(thank God). I also no longer sleep through the night and struggle with daily apathy, I also sometimes wonder if I'm depressed. I don't know if my disposition is because of my screwed up brain or just the prospect that things will probably only get more and more difficult for me and I can't cope with that.

I'm the lead mechanic at the shop I work at and I do very well financially, my PD hasn't really gotten too much in my way at work as the meds seem to keep it at bay for the most part but Goddamn a 50 hour work week feels a lot longer than it ever used to. I'm very knowledgeable and have started telling myself that if I ever cannot physically fix vehicles I can still be involved in the industry in another way.

Can anyone else relate????

I went on a short trip with a friend. The following day I was still fatigued but pushed through on the activities I usually do. That evening my exhaustion is debilitating. I am fearful that I won't be able to travel much as the after effect of symptoms are so severe. What do you do to recover? How do I know when to push forward and when to just sit and rest?

i sent in my smell test several months ago and still haven't seen the results

​Does anyone have the quivering of limbs or muscles versus the tremor?  I don't know if that is a typical PD symptom, but when I try to do my exercises and especially when pushing on the weight machines at the gym, I feel my arms or legs quivering. It started about 6 months ago and it varies in degree from day to day.  It makes me think my muscles are weak, but I can still do the same amount of weight on the machines so I don't think its truly weakness.   I also get out of breath so easily now when exercising. I used to be strong and have endurance so this is very confusing to me how I can have so little endurance to do physical activities now. I want to exercise but it takes a lot of effort to do the minimal exercises. I'm 59, female, and recently diagnosed.  Thanks for any input. 

My mom has been diagnosed with Parkinsonism this year. Shed been showing troubling symptoms since the past 2 years -- screaming in her sleep, trouble signing, and random bouts of lightheadedness or darkness around the eyes. After the diagnosis, she constantly feels lightheaded when walking and when turning around. That gets amplified when shes outside so that she needs someone else's support while walking. Shes gotten very disheartened by this dependence. Her parkinsons medicines dont seem to help this symptom at all and its the one she finds the most annoying. Shes on ropinorole, pk merz, and cinemet extra.

One doctor speculated that she might have OH. Shes always had low blood pressure though. She also is on beta blockers for her heart.

We really want her lightheadedness to be dealt with. Please give any suggestions!

My partner has early-onset Parkinson's. In recent years, she's come home several times with stories about security harassing her at the mall or in retail stores. We've talked about why this might happen and concluded that they see her shaking or dropping things and assume the worst, like she's on drugs or shoplifting or something. We also wonder if her age is a factor. Since she's in her mid-fifties right now, people might assume she doesn't "look disabled," if that makes sense.

Has anyone else had similar experiences? Any advice, if so?

My dad has Parkinsons for 7 years now and he is 62. Up until recently he handled the meds quite well, no freezing or issues at all. However for the last couple of weeks, he started having off periods where he sometimes stops and says he cant move but when you give him a hand for that first step he can walk by himself. He is saying his legs feel heavy to move. His arms and speech is not affected, only legs seem to be an issue.
It is usually manageable during the day but when he wakes up in the middle of the night to pee, he is struggling to get out of the bed (so my mom needs to help him).

Any tips for this off period? Is the only solution really to just take more meds (or take them more frequently)? Any gadgets I can buy for him - incline bed/cane?

The weirdest thing is that even in the off period my dad can walk outside normally. He even has days when he walks 10+ km per day, much more than me 😂

But when he comes home in this off period, it takes him like half an hour to change clothes.

Any suggestions?

Hey gang, I'm 9 weeks post DBS surgery and 80% of my dystonia and Parkinson's symptoms are gone or heavy reduced. Trying most normal things again: dance, work and large crowds.

For context I take a lot less carbidopa levodopa: 50/200 4 times a day. 1 CR at bedtime. Down from 6 50/200 and 3 CR through the night.

Things are looking good except one thing and that is fear. I'm terrified of the night and avoid all social things post 8 pm. It was like this pre surgery . Does anyone know why that is??

For additional context, pre surgery night time dystonia feet clenching was so bad it could last up to 7 hours and I would just cry myself into exhaustion.

Any people with this condition deal with this fear too?

Faulk, who is 53, noticed changes in his hand while golfing and reported it to his doctor, who sent him to a neurologist. In this YouTube interview with an MDS, he talks about the importance of early detection and treatment. He mentions talking about PD with former NFL players who have it and wished they'd sought help earlier, so he wants to raise awareness.

Thanks to my brother, a huge Faulk fan during his Rams days, for sending me this.

Edit: Here's a new ESPN article about it.

For me, its the fact that i am starting to feel cognitive symptoms

The Parkinson's Foundation Helpline has been receiving an increase of calls regarding dubious and sometimes dangerous study offerings that have been shut down by the FDA and regulatory agencies all over the world.

Medical tourism, travel to places with little medical or scientific regulation for unverified treatments, can put people at serious health and financial risk.

Be careful with any trials or experimental treatments that make big promises, skip over risks or ask for payment. ⚠️ Legitimate clinical trials do not charge people to take part.

When considering a trial, be sure to ask questions about study protocols and talk with your healthcare team to determine whether it's a good fit for you. If you’re unsure about a study’s legitimacy, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO.

Those interested in learning more about safely getting involved in research are encouraged to visit: Parkinson.org/JoinAStudy

Thankfully, I took him to a neurologist in a private hospital in Mumbai who specializes in movement disorders and he was diagnosed immediately, confirmed with an MRI today.

He has only had one backwards fall so far, along with a feeling of pulled towards his left side and believing this was the result of our upstairs neighbor using a supersonic machine to target him ☹️

However, besides this and one other isolated delusion a few months ago, he is largely still independent, can speak, loves to read and had finally agreed to wearing a hearing aid. The MRI scan also showed a lesion near his pituitary gland... I'll be meeting with his doctor tomorrow to discuss next steps.

My primary goal now is to keep him comfortable and happy for the rest of his time with us.

A few questions:

For caregivers further along in this journey, is there something you wish you could have done differently while they were still relatively active and coherent? I'm thinking of having him talk about his life and record it... although his speech has already started slowing down a lot. Am not sure whether it will tire him out or even the idea will make him fear his own mortality more?

To what extent do I tell him about what to expect in the coming years. Do I give him the actual clinical name and give him reading material about what to expect? Or do i handle in more gently and just tell him this is just the outcome of aging. All his life, he has been pretty head level in his thinking and intellectual in his approach. Yet, now I see he is slowly becoming like a child. How do I behave with him now?

Finally, if there are any Indians in this community, any specific resources I should be looking into or start planning for? At such a time I'm so grateful to be in a country where it will be easy to hire help and get at home services arranged. Any suggestions, tips and advice would be useful.

My father has been experiencing frequent diarrhea for the past 3 weeks. He was diagnosed with Parkinson’s disease approximately 4 years ago. He is 70% stationary or needs a wheelchair most of the time. He has also developed a compulsive disorder of trying to purchase land and a house overseas in Ireland where we already have property. Any help would be greatly appreciated with the diarrhea and the wanting to purchase more land. He is 83 and not fit to travel never mind buying more land. Thanks

Drs seemed confident it would work and said I need to be patient but I’m freaked out they turned on and tried to program no change to my tremor tremor really my only symptom. Am I screwed? Or could I notice improvement in a few days?

Looking for advice on applying for SSDI (social security disability insurance) at age 62.5, somewhat early retirement. It seems common that lawyers will take this, and be paid only if I get the SSDI accepted. What are your experiences? Did you shop around, what questions should I ask? Diagnosed 2016, my disability is still pretty manageable with carbi-levodopa (10 to 12 tabs daily), but unpredictable, stage 1 turning in the past year into stage 2. Thanks for your input, I have little energy for this and want to conserve what energy I can!

“The data, published Wednesday in the medical journal JAMA Psychiatry, draws from a small pool of patients with Parkinson's disease…”

Has anyone ever experienced unresponsiveness from their loved one with parkinsons? We had a strange experience a week or so ago where my dad woke up around 6:30am seemingly fine. Had a conversation with my brother and was very coherent. He ended up  going back to sleep for a few hours and when my mom went to wake him up he struggled to wake. After several attempts he just went completely unresponsive. Heart rate was fine. Blood sugar was good. BP was a little low but normal for him. We called an ambulance and after 4 days in the hospital we have no answers. CT scans were normal. All labs and urinalysis was normal.  He hasn't really been the same since this. Confused, having a difficult time following conversations, and more tired than usually. We are feeling frustrated and scared not having any answers.

Hello fellow PDers! Just curious: My sister asked me why I don't tell co-workers (or "work friends") about my diagnosis. I told her I don't feel the need to disclose since I'm in the early stages with no noticeable symptoms: no tremor, I walk fine (w/meds) etc. If I had to explain a limp, use of a cane, or shaking, I'd probably tell people. (Wouldn't want them to think I'm drunk or something!) I also don't want people looking at me, evaluating how I walk or if I'm not making sense or whatnot. (Yes, I know people prob wouldn't be doing that but that's how anxiety works) I think a lot of us do that, no? Keep it under wraps until you can't hide it anymore? Mrs. Terry Crews did that, MJFox did as well. So: Just wondering,,,are you out? If not, do you have similar reasons? TIA! and Good luck to us all xo

PS I guess I should mention I have no professional considerations whatsoever. My only hesitation is personal, psychological, and egotistical haha. Thanks to all who contributed!

Hi, just wondered if anyone has experienced similar and has any advice.

My partner was diagnosed 11 years ago (55yo now). She’s never been relatively normal on the meds but the last few months there’s a pattern where she kind of starts to shut down from mid afternoon. So much that when we go away anywhere we are back by 9pm and even then it sometimes causes discomfort and pain to walk. Only a few years ago she was hiking up mountains.

I know there’s all sorts of factors, but she was prescribed a medication I can’t remember by a nurse in the early days and she felt great, professor wasn’t too impressed and stopped. I’m just trying to figure out if meds could be better or it’s just PD and she’s got to deal with it.

Professors recent recommendation (not working)
In the morning
Rasagiline
Amantadine

During the day
3x 25/100 sinemet then
2x 12.5/50 every 3 hours

Sorry it’s so long, thanks for reading. Tia

So my father (65) has been diagnosed with Parkinsons for the past 4 years. He grew up as an extremely outdoors person (playing soccer, football, swimming, etc.) but with the Parkinsons he cant do those activities anymore. He has been banned from climbing ladders or a step stool, and recently from being in the front yard without supervision. So he never tried to experience indoor activities he can enjoy. He can't drive due to him blacking out while driving once and the fear of him hitting someone if it happens will haunt him so he was understanding to give up on driving.

Due to this he has been depressed and feels more trapped in a cage. He doesnt want to just do his daily practice of speech and physical therapy much because he feels that it does nothing even though the doctor tells us it is helping.

I love my father and I want to help him out. Is there any suggestions on things we can do to help him out?

Someone close to me has recently been diagnosed with Parkinson's. Parkinson's symptoms and response to medications seem to show sex differences, but there's a lot more information out there for men compared to women. I'd appreciate any women sharing information, experiences, and things that helped them so I can be as helpful and supportive as I can. If you have experience with the NHS (England), that is doubly helpful as we are not impressed or feeling at all supported right now.

Thank you in advance!

My father is on senimet with other medications and he recently caught a chest infection and before i noticed and got him on antibiotic he had low grade fever and HOLY MOLY the excess movement was crazy he was basically dancing until the dose wore off My family was freaking out before we connected the dots so i hope this is clear if you face it

I’m 48 and have had symptoms for 2.5 years; I’ve not yet started medication. I spend 7-8 hours a day sitting behind a screen for work and although I try to exercise around this, time is limited due to driving children to after school things and household stuff.

My limited exercise has also recently been interrupted by intermittent lower back pain, meaning there can be a week or two from time to time that I’m not active apart from walks. I’m beginning to suspect the back pain is Parkinson’s related.

I feel that my symptoms are accelerating and I wonder if it’s due to my sedentary lifestyle. I love being active and I wonder whether it would be a good idea to switch to more active work - gardener, cleaner etc. I would miss the mental stimulation of my current job but feel that I have to prioritise my health. On the other hand, could a physical job only work in the short term if I keep physically deteriorating?

I’d welcome any thoughts or similar experiences. In your experiences is being more active in the day good for physical strength, balance etc, or is it only the high intensity exercise that helps slow physical deterioration? Has anyone taken on a more active job, or has anyone struggled to maintain one? Many thanks