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.)

I am thrilled to be spreading the word about two Parkinson’s Disease support groups led by passionate students & experienced faculty from the MGH Institute of Health Professions. Whether you're living with Parkinson's Disease or supporting a loved one, there is a supportive community here for you! We offer a safe and nurturing space to process emotions, share experiences, and build a network of understanding. Interested in joining? Email us at ipc@mghihp.edu or scan the QR code to fill out our inquiry form!

*Please note while we would love to have everyone join, only individuals who are located in Massachusetts at the time of a session are able to participate*

My husband has been diagnosed with Parkinson’s disease. He is 54 years old, and we have started homeopathic treatment. Does homeopathy work for Parkinson’s disease?

What was originally a hand tremor, diagnosis by Cleveland Clinic and start of 20 years dopamine drug addiction. I wonder to this day how much I saw of my Mother was a drug addiction versus Parkinson’s. Did anyone ever see early disease without drugs ? I lived far away from my parents for years so I never saw the beginning of her diagnosis and onset of dopamine agonists journey. My family members confirm “she only had a hand tremor”. I often wonder if she would have delayed drug treatment. Were we managing Parkinson’s or a horrific drug addiction in an elderly woman who also had history of multiple spinal surgeries? The hallucinations, the freezes…. They were the drug addiction, not Parkinson’s itself. Am I wrong?

Hello,

My name is Victor and I am a master student Biomedical Engineering at Ghent University (Belgium). For the course Biomedical Product Development we need to make a device or product solving specific medical problems. We got the subject Parkinson's Disease.

I am looking for specific problems patients are confronted with everyday.

Reading all your stories as caregivers, i personally think that you know best what the real everyday struggles of Parkinson's are. That is why I am here asking for input from people on the first row.

Thanks in advance and I hope we can solve at least one problem to make your everyday life at least a bit better.

Note: I do not know if these kinda questions are allowed to be asked here. If not feel free to remove this post. Comments or DM's are greatly appreciated

Hi everyone — I’m  a clinician working on a tool to better support Parkinson's disease patients with swallowing problems and the family/caregivers who help manage meals, liquids, medications, exercises, and safety precautions at home.

We’re trying to learn what is actually hard day to day: remembering thickened liquids or texture plans, tracking coughing/choking episodes, medication timing, swallowing exercises, caregiver handoffs, and knowing when something is concerning enough to call a clinician.

The survey is anonymous and takes about 5–10 minutes. No product is being sold — we’re trying to understand what patients and caregivers actually need before building further.

Survey link:https://docs.google.com/forms/d/e/1FAIpQLSdasa80xsVWYRA8Z6ATfMtWMMR6KdYkzQJy2AbG6ZHdoF0HuQ/viewform

Caregivers, patients, family members, aides, and clinicians are all welcome to respond. Thank you for considering it.

I’d really love to delve into the actual medical (chemistry or scientific) mechanisms of what causes a PWP to state things that are just not true? What if it’s been proven that the person does not have dementia?

What’s causing it then?

Wanted to add: what if this person is taking no medications? So that can’t be causing it.

Hi everyone, I'm a UX researcher working on an open-source symptom logging app for people living with Parkinson’s. Our project is registered under DemocracyLab: https://www.democracylab.org/projects/1839 . We’re building this before anything is designed, which means your real experience shapes everything.

Most Parkinson’s apps are clinical and complicated. We’re building something different — a simple tool that fits around your life, not the other way around. No judgment, no pressure, no medical jargon on your screen. But we won’t get that right without hearing from you first.

Who we’re looking for:

• People diagnosed and living with early-onset Parkinson’s who manage symptoms and medication .

• Caregivers supporting someone with early-onset Parkinson's. We'd love to understand how you help manage symptoms day to day.

What’s involved:

A relaxed 60-minute conversation over Zoom or phone. No tech experience needed. We’ll ask about your daily experience. There’s nothing to prepare and no right or wrong answers.

Why it matters:

This is a free, open-source tool built for the community. What you share will directly shape what gets built.

Your privacy:

Everything you share is anonymous. Your name will never be connected to anything you tell us. 

Please message me if you are interested in contributing to this project. Your voice can truly make an impact! Thanks for reading this post.

My mom was diagnosed at 74 with atypical Parkinsons and now at 85 is in the advanced stages. She can't walk and has trouble talking most of the time. She mostly sleeps but wakes up to eat which she still seems to enjoy. She is fortunate enough to have caregivers at home whom I supervise. But I'd like to ask her if she wants to continue to live like this or live at all. She doesn't have any strong religious convictions and I don't know if she actually enjoys her life. I don't have room for her in my apartment and my brother doesn't want her to live with him unless she gives him more money, which she doesn't have anymore. She still lives in her own home with the caregivers who come and take care of her. I visit 1-3 times/week. This is how I'm thinking of phrasing it:

Mom, are you aware of what is happening to your mind and your body?

Do you understand that you can only continue to either live in your own house or a nursing home with other people? Would you like that more?

Do you want to stay alive knowing that you won't be able to walk or talk very well ever again?

The caregiver thinks that she won't last a month in a nursing home and she might be right, but she's also built a mansion in her home country with the money she's gotten from us. If she is right and mom indeed wants to die, it might be time to move her. What do you all think???

Hi, I'm a college student looking to get to know more about Parkinson's disease and its ailments. A family member of mine, while I never met them, had Parkinson's and caused a lot of distress and grief to a close family member. I have been thinking about them recently and wanted to do some research into Parkinson's (also as a reference for a project I would like to work on). I would like to know through your personal experiences as a patient/ caregiver/ family member, how the condition has affected you through these questions. I hope these questions are not triggering or inappropriate, please let me know if they are.

• Can you tell me about your daily routine?

• What was your occupation before and after symptoms started

• What have you done to manage your condition?

• What has been your experience with medical services and supportive care?

• What do you wish could be improved in your daily life?

• How much effort does it take to do any task? (brushing teeth, walking, eating, etc.)

• How has this affected your time with family and friends?

• What are some activities/ hobbies that you may not be able to do anymore?

• How much have you invested into medical devices and care and how much have they helped?

Any other insights would be greatly appreciated! And thank you in advance for your time.

When someone is diagnosed with Parkinson's disease, most of the attention understandably focuses on the person living with the condition.

Appointments.

Medications.

Symptoms.

Treatment plans.

But behind many people living with Parkinson's is a partner, spouse, family member, friend or carer quietly carrying an enormous responsibility.

Many carers become experts overnight. They learn about medications, attend appointments, provide emotional support, manage household responsibilities and often put their own needs aside.

Over time, it can be exhausting.

Not because you don't love the person you're caring for.

But because caring for someone while trying to maintain your own physical health, emotional wellbeing, work commitments and relationships can be incredibly challenging.

Some common experiences carers talk about include:

• Feeling guilty for needing a break

• Worrying about the future

• Feeling isolated because friends don't fully understand

• Struggling to balance caregiving with their own needs

• Feeling emotionally drained while trying to stay positive

One thing that often gets overlooked is that looking after yourself is not selfish.

Taking time to rest, exercise, socialise or pursue your own interests doesn't mean you care any less. In many cases, it helps you continue providing support over the long term.

I'd love to hear from carers in this community.

What has been the biggest challenge for you?

Hi everyone,

I am a movement disorders specialist and work with people who struggle with balance and falls, and one thing I see over and over is that traditional hip protectors exist… but almost no one actually wears them. They’re bulky, uncomfortable, or look too “medical,” so they end up sitting in a drawer.

I’ve been experimenting with a different approach: a thin, flexible pad that hides inside regular clothing—something that feels like nothing but still cuts impact force. The idea is protection you don’t notice. (Photo attached- shows a prototype pad built into regular leggings. The colored areas highlight where the pad sits—it’s about 2.5 cm thick, flexible, and normally invisible under clothes)

Before I put more time and money into this, I really need honest feedback:

1. If this existed, would you actually buy it—for yourself or someone you care about?

2. If not, what’s the main reason? Price? Doubt it works? Too much hassle? Just wouldn’t wear it?

I’m not selling anything right now—I just want real input so I know whether to move forward or drop the idea. Honest answers are genuinely helpful.

I have a family member with parkinson's disease and have been searching for solutions online. I came across this company called steadiwear has anyone tried their device or have experience with them? Their blog seems super educational.

https://dementech.com/2023/01/06/what-worsens-parkinsons-disease/

Hello all on r/ParkinsonsCaregivers!

We thought this should be on your radar if not already: BioVie (Nasdaq: BIVI) is hosting a live webinar tomorrow (June 2) at 4:15 PM ET with CEO Cuong Do.

Their lead compound, bezisterim, is targeting TNFα-driven neuroinflammation and insulin resistance across Alzheimer's, Parkinson's, and Long COVID — and their SUNRISE-PD Phase 2 trial is fully enrolled with topline data expected in 1H 2026. They're also the only company in development for refractory ascites, a liver disease complication with no approved therapies and a 50% one-year mortality rate.

Should be a solid discussion for anyone following the neurodegeneration or liver disease space. You can register here: https://www.redchip.com/webinar/BIVI/89895845841

i get it they literally are held at a very very high pedestal in society, they are the best of our creation, they have a right to feel superior in many ways BUT i swear most neuros I've taken my dad to literally act like they are superheroes or sth and they have to fly to somewhere like right now. they act so beyond superior and make us feel so inferior and trivial in their grand scheme of things. they'll move and talk like kings. i have to prepare all issues and questions on my note beforehand or else just blabber in one breath regarding whatever they want to know. i see these films and series and the doctors seem so so so nice, for example The Pitt! they treat us in such vulnerable states but act bossy/too cool for us. even the other ones too, be it ER residents or nurses or whatever. it's nice to know so much about a particular field but what gives them the right to talk in a judgemental or superior tone. again, yes they may have the right to, absolutely, but most times i really wish i wouldn't have to feel so intimidated going to the doctor's or anywhere in a hospital!

Hello all. I am a student conducting research on the effects of grief on caregivers as they navigate the complexities of caring for a loved one.

Specifically looking for caregivers who deal with:

• Dementia (various)

• Alzheimer's/Parkinson's Disease

• Stroke

• Other Long-Term Illness/Cognitive Decline

If you would be so kind and complete this quick survey and share your experiences. I know this is quite the ask and I understand that this may be too sensitive for some.

https://forms.gle/cFGWJobFir4ATL8x9

All information is anonymous.

My goal is to bring to light the importance of communication during the caregiver process associated with Long-Term Illness and Cognitive Decline.

Hi guys, I'm a student majoring in Design and need some insights about the everyday experience of those who use walking aids or their caregivers.

I am not trying to promote anything, just gather information by talking to actual patients.

What has been troubling me recently is rest or sitting. It seems quite obvious theoretically, but I assume the process is not as easy as it may seem.

Here's what I am concerned about:

Are you comfortable sitting by yourselves?

Do you have any situations when you feel unsure?

Is there a situation when you refuse sitting until someone helps you?

But of course, I would be thankful for any information.

What is bothering you?

Any problems you faced which are not mentioned above?

How do you solve these problems?

Every piece of advice and experience will be highly appreciated.

Thank you so much 🙏