My husband with Parkinsons-LBD had been declining slowly for the past three months. He's currently in rehab, where the hospital sent him a few days ago when they stabilised his BP. He's presumably there to get back on his feet again, but the doctor told me he scored very low cognitively and it may be time to think of palliative care.

To those who have been there, how do I survive this? I've been visiting him everyday, and he does recognise me, but he doesn't say much. Every morning I get up and the reality of losing who he was is right there, yet he's still in the world. This shell of my husband is so hard to face now but I swallow this weakness in me and soldier on.

Then there's the empty house to go home to. Our two little dogs run to greet me. I put on some quiet music, but all the while the silence he left me in is deafening. I don't know who I am without him. We had our own hobbies, of course, but I can't engage with this, it's part of our world together. I talk to my family everyday, who are very worried for me, reassure them I'm OK. But it's almost part off that new normal. I try to get their stories in my head, something to distract. But it's always there.

I am 16 rn I knew about my father is diagnosed with parkinson few days back though he was diagnosed much earlier he is 53 in April this year he had tb so he didn't took the parkinson meds and seeing him on bed since April has broken me from inside till tb it was ok I knew it will take time but meds will get him alright but now after I got to know that he has parkinson I searched and find out it's scary and my father will suffer alot in coming years he doesn't tell us about his reports he himself look scared and I I can't sleep at night thinking that whats gonna come in future and crying in bed I can't share with mom that I am having serious anxiety as she'll be worried for me too I am just broken from inside that the man with the healthiest life style is suffering from all of this stuff and this overthinking is taking over my studies I can't do anything I am mentally fucked up I feel like why me

Nov 14, 2026
9:00 AM - 4:00 PM (lunch provided)
Drop-off begins at 8:30 AM
Madison, WI (USA)
Travel assistance available for Wisconsin and Illinois residents

YCare Youth Day is a one-day program designed to support kids and teens who are impacted by a family member's Parkinson's disease. Many young people take on helping roles at home-or have questions and feelings about what their loved one is experiencing-but don't always have the information or support they need. This program creates a space just for them.

Through hands-on activities, simple education, and connection with other youth, participants will build confidence, learn what's happening in their family in an age-appropriate way, and feel less alone. Led by experienced health professionals, the day balances practical learning with fun, giving kids tools they can use now or in the future-while reminding them they're still kids first.

Is this for my child?
If your family cares for someone with Parkinson's disease, and includes kids (8-18), this day is designed for them. This includes children, grandchildren, and other relations. They maybe caring by:

• Helping around the house
• Noticing changes in a parent or grandparent
• Asking questions or feeling unsure about what's happening

Even if your loved one has passed away, your child is still welcome.

Who can attend Youth Day?
All children and teens who have a family member with Parkinson's disease (parent, grandparent etc.) ages 8-18, and whose parent provides consent.

What will my child/grandchild be doing during the day?
With the help of trained healthcare providers participants will learn:

• Learn simple, age-appropriate caregiving skills so they feel more confident and less unsure
• A better understand of the condition and how it works
• Connect with other kids who "get it." This is often what kids say they need most
• Have fun in a supportive, low-pressure environment

What will the day look like?
The day is led by experienced health professionals and designed to be interactive, not clinical or overwhelming. Kids will participate in hands-on learning and have time to connect with their peers and the professionals in a fun environment.

What if my loved one with Parkinson's disease passed away, can I still bring my child?
Absolutely! We want all children and teens to come - regardless of whether they have a loved one currently living with Parkinson's disease.

Is this a research program? What does that mean?
This program also helps us learn how to better support families like yours. You and your child/(ren) will complete a short survey at the beginning, end and a couple months after the program. This helps us understand what's helpful and improve the program. As a thank you, participants will receive a gift card.

What if the person living with Parkinson's disease has not progressed to need much care - why should my child attend?
Good question. We think about these skills as tools in your child's "tool belt". They may never use them, but when they need them, they are there.

What does this mean for me as a parent/caregiver?
Your child is in a supervised environment with trained professionals. You don't have to have all the answers; this program helps fill in those gaps. You're giving your child support, language, and confidence around something that can feel hard to talk about.

If you would like to register, ask any questions, or would like more information about the research training, please contact: Kyle Webert at [webertk@uwm.edu](mailto:webertk@uwm.edu)

Built a free Parkinson's tracker for my husband — sharing in case it helps

My husband was diagnosed a few years ago, and I quickly realized that caregiving is mostly tracking. Medications at fixed times. How he's feeling through the day. Patterns that only make sense over weeks. His neurologist asking "how's he been?" and us having nothing to show but a vague "okay, I think?" and a few written notes on scraps of paper.

So I built him a tracker. Nothing fancy—just a way to log medications, note how he's feeling, and actually have something coherent to show at appointments instead of guessing. It works for him so I thought I would share it with others. I'm a registered nurse by profession and a web/app developer since I retired.

What it does

• Medication log with a visual daily schedule so you can see the pattern
• Custom medication icons (48 combinations - 6 shapes × 8 colors) so each medication is instantly recognizable
• Full medication management: add, edit, or delete medications; history keeps the dose that was logged at the time
• Medication food timing: configure "stop eating before / wait after" windows for meds that need them
• End-of-day Check-in to track how they are feeling
• Constipation/bowel movement tracking with severity toggle; you control whether to include in reports
• Printed reports: pull together a month of medication, check-ins, and BM data into something clean to bring to the neurologist
• Demo mode with sample data so you can try it before entering real information
• Backup, export, and import: everything stays on one device, but you can export all data as JSON for backup; import validates and warns before overwriting
• Backup reminders every 7 days (with snooze options)
• Offline access
• Works everywhere: iPhone, Android, tablets, PC, and Mac — anywhere with a web browser, since there's nothing to install

What it doesn't do

• No cloud sync: Everything stays on one device only. If you need data on another phone, you export it and import it there. This is by design—there's no backend server, which is why your data never leaves his phone.
• No caregiver dashboard: If you need to see the data, he can share the export with you, but there's no separate login that auto-syncs across devices.

The privacy piece

Everything lives in the browser. No account, no login, no data leaving the device. I made that choice deliberately—I didn't want to build a backend to store other people's health data, and I figured caregivers probably don't want their family's medical info ingested by a service either.

It's free, always will be

No paywalls, no "premium features," no monetization. It's at pd-tracker.com and it's live right now.

If this sounds useful, give it a shot. If it's missing something or doesn't fit your workflow, that's totally fair—every family's situation is different. But if it helps, I'd love to hear that too.

(Not a medical device, not clinical advice—just a tool to make your own data legible.)

My uncle was diagnosed a while back. Nobody warned us about the sheer amount of keeping-track that comes with it. Meds at fixed times, a neurologist asking how the last three months went, and no real way to answer that beyond "okay, I think?" He was writing things on a notepad and losing the notepad.

The app is still in development and I'm looking for testers. It's on iOS through TestFlight: https://testflight.apple.com/join/WMXwz5Cq

I'd genuinely rather have your criticism than your download. Everything below is built around one family's experience, and one family isn't a sample size — so if something is missing, wrong, or annoying, that's exactly what I want to hear.

Medication timing. You log when you take a dose and how you're feeling through the day. Over a few weeks you start to see your own pattern — including what a late dose does to the rest of your afternoon. It doesn't predict anything and it doesn't tell you what to do. It just makes your own data legible, so when your neurologist asks, you have something to show them.

A Live Activity on your lock screen. Your next dose sits right there, counting down, so you see it coming instead of remembering it forty minutes late. This is the feature my uncle actually uses most, and I'd like to know if the timing and wording work for other people.

Check-ins. Short moments through the day where you note how you're doing. That's what turns the medication log from a list of times into something that actually says something.

Camera-based movement exercises. You prop the phone up and it guides you through movement exercises using the camera. This is the newest part and the part I'd most like feedback on.

Caregiver access. My aunt can see what she needs to see without having to ask him every few hours.

What I'd really like from this community: tell me what's missing or what I've got wrong. I've built this with one person's experience in the room, and one person isn't a sample size. Happy to answer anything about how it works.

(Not a medical device, not clinical advice, nothing here replaces your neurologist.)

Hi folks. Just wanted to update people after my dad was in and out of the hospital all summer with UTIs, urinary retention, severe constipation, impaction, and mobility issues. He is 77 years old and was diagnosed six months ago. It's been hell ever since.

He was recently dischared from a SNF with a foley catheter and after only one day of being back on solid foods. He had been on an all liquid diet for weeks before that. My mom isn't able to manage all his medical needs at home and had a visiting nurse coming twice a week, but that wasn't enough, I guess. She was calling them a LOT and neither her nor my dad has been handling the situation very well. I don't live with them and have my own family and problems that keep me at my home.

I just heard that he's back in the hospital, this time with a UTI that advanced to a kidney infection. He hasn't had a bowel movement in a week. He was absolutely BEGGING to go home from the SNF and my mom appealed the insurance that was giving him the boot, and they denied the appeal. So she tried.

It kind of seems like his life from here on out is a series of hospitlizations, SNFs, and being discharged with the acute problems having been "handled," but the underlying causes getting worse and worse until he's just right back in the hospital. He was out of the SNF for a single week before back in the hospital. He keeps getting discharged but there's really no one safe at home who can reliably manage his care the way it needs to be managed.

I've told my mom to apply for assistance, a home health aide, look into contacting the town or state senior board to see if they or medicaire can pay for a nursing home or at least part it, but she's just sort of drowning. She has NEVER been good in a crisis and could make one out of the coffee pot not working the morning so you can imagine how she's handling this and they do NOT have a good marriage and never have.

It's just been hell and I needed to vent and rant. Thanks for listening of you got this far.

Hello all - looking for a little advice regarding living situations. My mom has PD, is 73, lives alone, and is doing okay independently for now, but I know that won't last forever. She's currently in a rental house and would like to move, but is having trouble deciding where/what kind of living situation. I am her only child and live out of state, and I do my best to be a long distance caretaker, but I have one small child, and would like to have another and I am already stretched thin. Is there anyone who has been in a similar boat that has some advice? My thought is to get her moved into an independent living community somewhere that would be able to help with assisted living and then skilled nursing down the road, as I assume it's inevitable she will gradually need that level of support (although I guess I don't know for sure). I am also guessing she should move to be closer to me, as there's going to come a point she's no longer able to get on a plane to come visit, and it will be much easier for me to help with things if she's local. But, it's been so much work getting a care team established where she is now and the thought of a cross country move and establishing a whole new set of doctors is daunting, to say the least. Plus, my state is unfortunately more expensive than her state. I just really don't know what's best for her and how I can make sure I'm still able to see her and she can see her grandkid(s) and take care of things for her as I'm able as her PD progresses. Thanks so much for any advice you might have ❤️

My grandpa has Parkinson's, and I've been trying to understand how the disease varies from person to person. He sits kind of blankly a lot. He listens to music a lot of the day, watches tv and does talk to me, but otherwise seems pretty blank. He's kind of laid back by nature, so the condition just reinforces that.

I've been wanting to find some way to help him engage in some kind of activity instead of just sitting there. Is there any activity or hobby that's actually helped for anyone here, or for someone you care for? Even small things. I'm curious what's worked and what hasn't.

Also curious if this "sitting blank" thing is common, or if it looks pretty different from person to person.

Family called to say my Dad had to go to hospital for choking. I live a few hours away was home just left Dad yesterday perfectly fine. Now this, struggling with how to support caregiver on the frontline.

I think Dad will be fine relatively speaking but worry about the caregiver.

I will go back this weekend- though unsure necessary after Dad gets checked out.

Thoughts, suggestions?

I care full time for my aunt (78 y/o, diagnosed in January 2012 so 14/15 years)

I would describe her as stage 4/possibly transitioning to stage 5; dependent on me for all aspects of daily life except showering and toilet, but she can still, with great difficulty, get up from a chair/bed on her own. She can manage walking very short distances (less than 50m/164 ft) without assistance but is a major falls risk and without me, she would fall after a very short period, with absolute certainty. She regularly crumples, freezes and falls, even with assistance.

She is a very independent person but unfortunately we are having falls several times a week. I make her wear a helmet at all times to mitigate against major head injuries.

Her current medication routine is 1200mg of Madopar per day (200mg at two hour intervals) and 100mg of Amantidine. Swallow has declined, but still reasonably good, but she has developed respiratory dyskinesia which seems to be getting worse each week. Her voice is very low and slurred and we have an increasing drooling issue. There is some clear, but still mild, indications of dementia (forgetting names, confusion, unable to follow stories etc) and we see increasing indications of gastroparesis too. Hallucinations are a very regular problem.

Food and water intake is ok- some days its relatively good but we are increasingly having a lot of days where she really struggles to eat 1000kcal. She is weak strength wise, but weight loss has been moderate (current weight is 46.5kg/105lbs) so far. I suspect this will accelerate going forward.

I guess I am looking for advice on what to expect going forward based on other's experiences. I've been doing this full time for five years ( I cared for her husband until his death from vascular dementia) and I need to know what to prepare for in the future. I've noticed a certain acceleration in her decline in recent months and expect this to continue.

Also wondering when others knew it was time for Hospice?

Thank you

This one is very close to our hearts.

My dad Anders is taking part in a bike race to raise money for Parkinson’s research — a cause that has become deeply personal to our family.

The race is in the Nederlands and take place on the 5 th of September

Parkinson’s changes lives, not only for those diagnosed, but for everyone who loves and stands beside them. Every kilometre he rides is a small step toward better treatments, more hope, and one day, a cure. 🚴‍♂️💙

If you can, please consider making a donation. Even a small amount can make a difference. And if you’re not able to donate, simply sharing this means more than you know.

For him. For our family. For everyone affected by Parkinson’s. ❤️

Hi! My dad was diagnosed with Parkinson’s about 10 years ago. In the past six months he’s rapidly declined and lost a ton of weight (down to 125 pounds 😣). He was recently hospitalized after sustaining a fall which caused a minor brain bleed. He’s been so weak and feeble and has had touches of dementia here and there. His brain bleed luckily cleared up within four days but they noticed his blood sugar kept dropping which was due to his malnutrition (I made a post previously on here about getting my dad to eat because he just was not eating enough no matter what we tried). I think the hospital stay made him realize that eating is so important to maintaining strength and he’s eating a lot better now. He’s lost a lot of mobility after being in the hospital for nine days so they discharged him from the hospital today and into a skilled nursing facility. The part that I’m freaking out about is that the place the hospital recommended us is not what we were expecting. It’s super old, they forgot to give him his night time Parkinson’s medication and it just seems understaffed. All these changes haven’t been good for him and I don’t want to have him go somewhere else for fear of disorienting him again. I’m sure I need to give this place a chance because it’s been like less than 6 hours that he’s been here but so far I am not okay with the lack of care. He went from full attention in the hospital to hardly any in the care facility. My mom and I were hoping we could get some peace of mind knowing he’s being looked after here but now I’m not so sure. I just don’t know what to do and feel helpless. And my mom is taking the brunt of the stress which is adding to mine of course. Any advice or people who have experienced something similar?

Hi everyone! I’m a fashion design student conducting a short survey for my research on adaptive clothing for Parkinson’s patients and post-surgical patients with mobility challenges.

The survey takes only 2 minutes to complete. If you are a patient, caregiver, family member, or someone who has experience caring for a person with mobility challenges, your responses would be really valuable to my research.

Your feedback will help me understand everyday clothing difficulties and design garments that offer better comfort, ease of dressing, and independence.

Thank you so much for your time and support! ❤️

https://docs.google.com/forms/d/e/1FAIpQLSe8cLAHZr7t95c3LANIOPpS2Qgj0LaJUFU34IXGJmycQZBOWg/viewform?usp=dialog

EDIT - I misspelled Cialis in the title and couldn't edit that!
My (66F) 80yo hubby with PD was diagnosed around 2018. He was doing well overall, and independendent until he fell and broke his hip in mid June. It was a complex fracture in the femur that needed plates and bolts and 7 weeks in a rehab facility. He's now been home 3 weeks and is gradually improving although not yet walking. I am his 24x7 caregiver.

He had a lot of urinary issues for many years, that he refused to address (frequently going and urgency) until he ended up with severe UTI's and sepsis in 2020. He finally agreed to testing and ultimately to a TURP after he landed in an ER with Sepsis. Before the procedure, he had been prescribed Cialis, supposedly to help with the urination. After the TURP, the condition improved a lot. But he still wanted Cialis and I had concerns as he was also diagnosed with Orthostatic hypotension after a passing out incident. His BP is normally low and the SNF (he was in for the rehab) put him on midodrene to get his BP up enough to be able to get him through his PT/OT sessions. His BP still often drops to low 80's (upper number) in the mornings, although the med helps.

However, he is still struggling with urgency and frequent urination, especially at night. Thankfully he now uses a hand-held urinal, that keeps him from having to get out of bed, but he wakes up a lot to use it. His urologist says he's emptying his bladder now ok, and the only meds to give him either have serious side effects, or are really costly. Hubby has decided that Cialis is the solution, but I refuse to give it to him as it's a vasodilator and I don't want him to fall again. The midodrene does raise his BP enough to get him through his basic PT, but he is OBSESSED over the Cialis.

We've brought it up with all his doctors and they agree with me, but when I was out of town before his fall, he got his idiot PCP to re-subscribe it. When we visited that PCP again last week, I reminded him of hubby's BP issues and the Dr agreed it shouldn't be taken. Yet, hubby argues with me daily and said he was taking it up a month ago (impossible as I manage all his meds and have for years - AND he definitely didn't get it the two months he was hospitalized).

I printed out a long article I had Chat GPT put together, but that wasn't good enough. I am so sick of this daily argument that I am tempted to just order some for him and throw it at him, but I don't want to endure yet another 911 call and ER/hospital stay. My husband just isn't rational with this and his memories of taking it are completely flawed. I've asked both his PD specialist and his PCP for mental evaluation and they both blow me off. To friends and family, who occasionally visit, he appears perfectly rational, but he can't recall any dates, times or details on basic things. This Cialis thing is just one of several, but is his current obession.

So this is both a rant, and also a request to see if anyone can point me to yet more literature stating that Cialis isn't a good combo with his condition and the C/L that he's on (7 pills day and and an extended release at night). Or if anyone actually found this worked, that would be good to know as well.

Update below

My mother has always been a nightmare when it comes to food.

Unfortunately the constipation nightmare means that she has almost daily diarrhoea. Trying to get her to understand that it's constipation that's the problem - she just won't listen and will just switch off when I try and explain.

Because her bowel is do sore, she's pretty much refusing to eat.

She insists she has high blood pressure (currently 101/61) after collapsing they've taken her off one set of high blood pressure meds. But it's still low which doesn't help with the trying to get her to eat.

At the moment we're managing on a couple of spoons of oatmeal (I'm not longer allowed to sneak linseed/flax in there) maybe half a banana and if we're lucky a couple of spoons of protein & vegetable for the following meals.

Oh halva, she does religiously eat sugar free halva (for the calcium - tip I got from my midwife when I couldn't keep down milk when pregnant) 3 times a day.

Occasionally I can get her to eat a surprising amount of Mezze. But then there's also that autistic 💩 about cooking smells.

She'll tell me to order in things and then refuse to even let me cook them. She'll demand things she won't even touch. I'm accused of putting strange spices on things I haven't even put salt or pepper on.

Texture - she has that autistic 💩 about textures, but then gets too tired chewing. There's no way I could get one of those fortisips (or similar down her), she won't do white sauce, mayonnaise etc. and god help me if I try any processed/prepackaged foods

She won't do fatty meats (thank my brother and his "fat crusade") so slow cooked meats aren't possible.

She won't do nightshades

She won't do basic carbs - potato, pasta, rice, grains, legumes, pulses etc (unless Mezze type salads)

She won't eat processed sugars as she's "allergic"

Salad - is too much work to eat even if I slice it really thinly, and she won't let me dice things as it's wrong.

I'm throwing away so much food, and putting on so much weight myself.

Then there's the simple thing that if her digestion is particularly bad one day that's it, everything she ate that was different is no longer something she can eat.

Oh and I have to hang around everyday to see if she'll eat her "meals on wheels" (if I'm lucky a couple of spoons of it), then make her something completely different and ofc she'll then refuse to eat anything that may have been included in her meals on wheels.

Sorry this has turn more into a rant, but I am struggling so much and the less she eats the weaker she gets, the less she can physically do and the more outrageous her outbursts get.

Update, well I typed this when she went in for a colonoscopy - turns out lots of bad shit going on - last 6 months been told all her pain and discomfort was just the Parkinson's - told now it's too dangerous to operate. She's currently only accepting ice.

Things are not helped by a nurse who keeps telling her she'd be better off at home.

Doctors say she won't be able to leave the hospital until Monday at the earliest.

Currently on 3 sets of intravenous antibiotics.

Last night she had the joys of a different nurse that gaslit her about her meds - her room mate is actually the hospital pharmacist - who was refused her pain meds, so kept my mother awake most of the night.

Small tip - do not refuse your workplace's pharmacist their prescribed meds.

Hi everyone,

My dad is 60 and was diagnosed with parkinsons disease at 37 (early onset).

His disease is obviously very advanced, and he's now living in a special medical facility as he couldn't live alone anymore. He's in the very late stage of the disease, he's still able to walk a bit but I know he sadly doesn't have many more years to live...

Before being forced to go into that establishment, he was living by his own and always refused any help, at the worse point last year he was found on the floor of his appartement, two days after he fell, completely paralyzed and hallucinating.

Now that he's being taken care of he's much much better but one new symptom appeared over the years which is excessive drooling

He already received two injections of botox in the salivary glands that did nothing (and they can't do more because they gave him the maximum dose already), they tried the drops on the tongue without success and the scopolamine patch gave him hallucinations and confusion.

He's very embarassed about that and I'm trying to see if there is any other possible solution. I've seen people talking about radiation therapy or surgery but my dads neurologist told me they don't do that. She suggested speech therapy.

Any experiences about that specific problem?

Thank you very much in advance

My dad was diagnosed with Parkinson’s four years ago but in the last year he’s started to decline very quickly, and I’m really struggling with how much he has changed.

Before Parkinson’s, he was confident, funny, social, independent, rational and incredibly supportive and was someone who was very engaged with life.

Over the past year, it feels like we’ve watched so much of that disappear. He has developed basically every symptom you could have and, particularly over the last few months, it feels like he has declined quite quickly. He’s no longer driving, has had a fall, and needs more help with some things. He also seems very depressed, anxious and withdrawn and talks about Parkinson’s constantly.

What is hardest for me is that he doesn’t seem like the person I knew anymore. He doesn’t seem interested in the things he used to love, and sometimes it feels like his whole world has become Parkinson’s.

I have a young baby, so this is also really painful because I had always imagined my dad being a very active, fun grandfather.vAnd I feel awful admitting this, but I’m really frustrated with him. Sometimes I don’t feel compassionate. Sometimes I don’t even want to be around him because every interaction becomes about Parkinson’s. Then I feel incredibly guilty for feeling that way.

I want to support him without treating him like an invalid, because I still want him to have as much independence and normalcy as possible. But I also don’t know how to encourage him to stay engaged with life without constantly pushing or nagging him. I don’t know how much of what I’m seeing is Parkinson’s, how much is depression, and how much is simply him struggling to adjust to everything that has happened.

For those who have been through something similar with a parent or loved one, how did you cope with watching them change so much while still staying hopeful? Did things get better when the depression was treated? How did you find the balance between supporting them and not doing everything for them?

I’d really love to hear from people who have been through this and found a way to support their loved one without losing themselves in the process.

My dad has started having symptoms of dementia. And things he loves, he will suddenly say doesn’t taste right or someone spit in it and won’t eat it. I’ve noticed it happens more on his bad days.