Hi everyone, After having an absolute terrible day I decided to look up groups that may help me oit. My boyfriend has juvenile PD, has been diagnosed for 5 years now. Symptoms started when we was 17. We’ve been together 1 year and we plan to marry. But his Impulse control got worse in the last months and I had to basically force him to talk to bis neurologist. He was on Rotigotin 2mg and is now on rasagilin to deal with the impulses better. But now his off-phases got worse. And I already feel like a Nurse of a entertainment program.. just to help him to not conpletely fall into a dark hole. I feel kinda hopeless today, and I’m kinda retginking the whole relationship. Anyone have advice what to do on these dark days? Btw I hate PD, what the fuck kinda sickness is this bullshit.

Hi yall- I’m not sure if this is maybe too dark or emotional for this subreddit but it’s been weighing on me.

I’m 19 years old, and my mother has Early Onset PD- she was diagnosed in her early 40’s, she’s now in her early 50’s, and I experience so much anxiety about how much longer it will be before the disease takes over entirely. She struggles with a lot of symptoms, but has been doing far better after receiving her brain stimulation electrodes a few years back.

The issue is that no one in my family ever really talks about the realities of her disease. My sisters are both roughly 12 years older than me- they got to know the mom that ran around with them, and I just simply didn’t- I’ve always had high levels of anxiety around her progression, but after moving to college I feel like it’s gotten so much worse not being there with her. I was able to go to a nice school for psychological neuroscience, and work with scientists who specialize in Parkinson’s research, just to feel like I’m doing something. I send her articles on new research, encourage exercise, therapy, all the things- but nothing seems to help the panic that sets in when I’m thinking about it.

I just struggle grappling with it- and I cry frequently at the thought of my kids not getting the grandma that I know she wants to be, or the sad reality of this disease being the death of her. I’m hoping maybe being here might help- I don’t really have a community to talk about these things with. So I’m really just wanting to know how others deal with these feelings for themselves. I love my mom so much and I’ve never known a life where I’m not caretaking for her.

I would love to hear your stories, and if you’re reading this, thank you for listening to mine.

How did you respond?

My relatives and I were trying to go on our first vacation in multiple years due to my family member’s Parkinson’s. We tried to board early/get early boarding so that way our family member could have the row that was across from the wall-ei no one in front of him. However, a sports team was able to board before us.

My family member, due to his tremors, accidentally was knocking into a passenger’s seat in front of him. He didn’t realize it. The passenger was angry, and turned around and yelled at my family member. The flight attendant seemed to not want to get involved and said they needed to work it out. My mom whispered that my family member had Parkinson’s and I think the flight attendant backed down a bit.

I wish I would have spoken up and told the flight attendant he had Parkinson’s and we were doing the best we could do and that my family member was trying. I was in shock and felt horrible since it took us so long to even get to the point of traveling. I froze.

Now my family member is so embarrassed and doesn’t want to travel. Yes, I found out afterwards that maybe we could have got disability seating.

Has anyone experienced a confrontation in public? How did you react/stick up for your family member ?

So I have a 76 yo male relative diagnosed with PD about 15 years or so ago. Needless to say things have gone downhill during that time. There are now a lot of falls. Speech is difficult. Relies on spouse for everything especially to take meds. There is a real need for in-home professional care both so the spouse can go to the store and because the spouse has their own forgetfulness issues that cause disruptions in medication. I don’t know a lot about Medicare but I was told if he had Medicare part C it would cover him for in-home healthcare. Anyone have any advice or knowledgable on this subject? I doubt they can afford a full time nurse on their own. TIA

The patient always shouts for help to get up and walk in the middle of the night. He doesnt do anything, he just wants to stand up and walk a bit then go back to bed.

This cycle continues for the rest of the night. The primary caregiver is his wife. He doesn't let her sleep at all.

Im in charge tonight. Do i ignore his shouting for help? I feel guilty if i ignore him but he will do this non stop. He is like this even in the morning.

I’ve moved in to care for my mother who has Parkinson’s. She’s always snored to an extent, but now I’ve noticed it’s LOUD. She also laughs and just makes the craziest noises. Anyone else having this experience? Have you found any solutions?

Dr Verhagen (leading expert in Parkinson’s) is hosting a free event in honor of International Parkinsons day next Saturday, April 12th at 2:30. Sign up and get more info at the link attached

Hello! Our team is creating a prototype and business plan for a new hand tremor aid product in our undergraduate entrepreneurship class. This survey is to help collect data and ideas to help us brainstorm potential uses and features that Parkinson's and other communities would like to see in a new assistive product. This survey can be answered from the perspective of those with hand tremors, family, friends, or caretakers. Every answer and idea will be greatly appreciated! Thank you for your input and ideas!

My father has been diagnosed with PD for about 5 years, he’s currently 79. He is mobile but not entirely steady. He still gets around fairly well, can drive (but prefers not to), can manage stairs (slowly); he can’t go for walks very far (hip replacement last April). He previously had a hot tub at the house and loved it. He’s remarked multiple times how he would love to have another, and let’s be honest, he can afford it and might as well enjoy his twilight years.

my question to everyone, do you think they’re safe? I am his caregiver and have moved in to take care of him but i work quite a bit so I’m not around to “monitor” him all the time. I guess my main concern is him getting in and out of it, slipping and hitting his head or something, I want more than anything to have him happy and enjoy the little things, but am just a little nervous.

Any advice\opinions would be greatly appreciate.

my mother has had parkinson's for since 2012 and she's 65.

she is currently on hospice and gets specific medication for her hand so they can work on wound care without it hurting her. after last night, this morning she woke up with a deep cough and has been on and off sleeping all day. no one is sick in the house. the nurse stopped by this morning but said she really couldn't get a good listen and to just wait

I'm worry that she has aspirated but she won't let me take her to the hospital.

i'm not sure what to do and i feel hopeless. i feel this past year things just have been going downhill and im just trying the best that i can to help her in any way

My husband and I are both in our 50s. He was diagnosed with yopd about 8 years ago.

He’s very active, still works and the physical symptoms so far aren’t too bad. He’s failing a bit mentally and physically slowing quite a bit so I can definitely see the disease taking it’s toll. The biggest issue is depression and apathy, which I know are also symptoms of the disease. That’s the worst part and the heaviest load for me, trying to keep everyone’s spirits up and keep us all moving the ball forward.

I’m finding myself getting to where I’m thinking about self preservation, in part because I know my kids are going to need me more than ever as my husband declines. I need to be able to be there for them so I need to be in the best shape I can be.

My current status is I’m overweight, on two meds for depression and anxiety. I don’t have much in the way of social interaction beyond my full time job and immediate family.

Money is tight. My husband is still controlling the finances and recently confessed to a porn addiction.

I can’t begin to tell you how much pressure there is on me right now. How do I begin to protect and take care of myself now and going forward? What are you all doing or if you’re further along, what do you wish you’d done?

My Dad (80) has just been discharged from 6w in hospital after a fall broke his hip. The disruption in routine, lack of mobilisation, and messing up his meds mean his mobility has taken a huge decline, and his dementia has ramped up. He’s unsafe on his feet and needs someone to help him use the walking frame. We have carers coming in four times a day to help my Mum look after him. All good. Except at night. He cannot remember that he is not allowed to get out of bed as it’s unsafe. We’ve had an infrared beam alarm fitted, to alert when he’s trying to get up, but this relies on Mum sleeping in his bedroom and jumping up multiple times a night. She’s already exhausted and it’s only been two nights. (Dad has a disability accessible suite downstairs, and mum has her own retreat upstairs.)

Does anyone have any tips on how to keep him in bed? We’ve been told that bed guards are dangerous as he’ll likely try to climb over them - is this the case? All insights appreciated as this is an escalation we weren’t prepared for!

What's been crazy about this whole Parkinson's/dementia with my mom has been the suddenness of it all but nothing more shocking than the recent drop in her abilities. Over the course of a week, she basically lost the ability to walk on her own and now has immense tremors. I took her off the opiates today because I figure they're only going to make them worse because of the crash in dopamine that comes after the opiate wears off. I've gotten her some amino acids (L theanine/tyrosine) and she's sleeping on the armchair currently.

She's 79. Almost the minute she turned 79, things started going downhill rapidly but nothing as quick as this last decline. I'm just hoping the removal opiates and introduction of amino acids will help her at least a little.

I'm terrified and how quick this is. Idk. Just venting, observing at this point. This is my introduction. Thanks for reading.

I did. It was so strong and had a distinct hormonal scent. Now, I find myself more intrigued by these smells because they seem to indicate something deeper—like a signal from my body. Sometimes, when I’m stressed, I swear I can actually smell the stress on myself. I just don’t want to forget that scent, but at the same time, I get paranoid that one day I’ll smell Parkinson’s on myself.

Hey everyone,

I’m considering developing an app specifically for Parkinson’s patients and caregivers. Some of the features I have in mind include:

• Curated news & research updates – Keeping up with the latest findings in Parkinson’s.

• Medication reminders – Customizable alerts to help with medication schedules.

• Tremor tracker – A tool to monitor and track tremor patterns over time.

• Daily symptom logging – Helping users record symptoms and patterns to discuss with their doctors.

Would love to hear your thoughts! Are there any features you think would be useful? Any points in existing apps that need improvement?

Looking forward to your feedback!

I’m 28f and my dad is 63. He was diagnosed with Parkinson’s in 1999. Im one of his main caregivers now. He’s been having hallucinations for years but now it’s getting bad 😪. Yesterday he said he was disappointed in me and asked me why I bring a bunch of guys to our house for them to “pay me for s*xual services”. And he hasn’t stopped talking to me about it since then. It really saddens me and grosses me out that the delusions are about that. He also has accused my mom of bringing guys over and her cheating on him. Along with other hallucinations. Some of them are about seeing monkeys or rats in the house or seeing his mom here. I would like to hear if anyone else has similar experiences with their loved one. Life is hard

Hi, I'm a researcher at Utah State University where we are studying ways to improve communication in Parkinson's disease. I'm reaching out to see if you can post this flyer in your Facebook group to see if there are some people with PD who are willing to take a survey about PD. IRB Protocol #12655

My dad recently left rehab hospital after 2-1/2 weeks following a fall and a suspected case of Parkinson’s pneumonia. The doctor recommended 24/7 in home care to supplement my mom’s role as primary caregiver. They live in Hawaii and I (57) live on the west coast. Fortunately they have the resources to spend the money on care (even if they don’t want to) but I think my dad would be better off in an assisted care facility, which neither of them want, and I get that. At this point I’m more worried about my mom either injuring herself or burning out. I have this overwhelming sense of doom and anxiety when I’m away and the same feelings when I’m with them (as often as I can, thinking shorter, more frequent trips are better than longer, less frequent ones)

Re in home care: my dad hates it but seems to like having someone else to talk to.

I’m taking my mom to her follow up appointment after the scan that confirmed she has Parkinson’s. What would be good questions to ask the neurologist? Thanks!

My husband has Parkinson's and I've noticed over the last few years a huge decrease in his motivation to do things. When he was. first diagnosed he was good about exercising but now, he rarely walks or does any other activity. He does very little around the house or yard work. We almost never (may be a couple times a year) get together with other people or family for social events. Getting him to do something is a LOT of effort on my part. Do any of you have experience with this?

Is there a device to put under the feet ( of someone with PD who freezes very freq) to help them pivot? ( As in sitting?)

Friends husband with advancing PD but is with Kaiser. Anyone know of the VA, Portland ORegon care?

Hi, I'm looking for the best mattress and firmness for my 32 year old son with Parkinson's. He was diagnosed at 16 and is having more and more difficulty sleeping. He also needs to be able to get out of bed in the night, to use the bathroom. He's been having a lot of night accidents, because it's hard for him to get out of bed when he's sleepy. He is also non verbal with autism , so I have to guess what he needs if he can't let me know. He uses a walker for balance but any other assistance devices you can think of to help, would be appreciated. Thanks in advance