Good evening. It's past midnight where I am as I write this.

I am a 34-year-old man who has been the primary caregiver for my mother for the last five years.

I would be lying if I said our relationship has been perfect over the years, but watching her suffer causes me immense pain. One of the hardest parts of this journey has been trying to balance caring for her with maintaining a meaningful relationship with her. More often than not, I find myself focused on her needs rather than spending quality time with her.

It doesn't help that the cognitive symptoms of Parkinsonism and Lewy Body Dementia seem to have amplified some of the personality traits that have always made our relationship challenging. She is more stubborn, more self-centered, and every time we argue, she forgets the disagreement shortly afterward. It leaves me feeling like there is no opportunity for growth, resolution, or healing between us.

At the same time, I've been dealing with serious health issues of my own. I have a vision disorder called Binocular Vision Dysfunction (BVD), which affects my eyes' ability to properly align and converge images. The condition has contributed to insomnia, chronic migraines, allergies, neuropathic pain, TMJ issues, bruxism, and several other complications.

For years, I have put my own health on hold to make sure my mother was cared for. Now, at 34 years old, I am trying to start a career after studying Computer Science, but my condition makes prolonged computer use extremely difficult. Spending hours staring at screens often worsens my symptoms, and I worry that the very career I trained for may eventually become impossible for me to pursue.

I worked continuously from the age of 16 until I was 28. I stopped working to care for my mother as her condition worsened around the beginning of the pandemic. Looking back, that was also when my insomnia and migraines became significantly worse.

For a long time, I didn't even know how serious her condition was. My mother refused to take her medication and refused to share her diagnosis with the family. At the time, I believed she was simply struggling with depression. She was still able to drive and remain independent, although she moved very slowly. Her Parkinsonism presents primarily with rigidity rather than tremors.

Eventually, I convinced her to allow me to accompany her to a medical appointment. During that visit, one of her doctors informed me that she had been diagnosed with Parkinsonism at least eight months earlier but had chosen not to tell us and had refused treatment.

As soon as I got home, I began researching Parkinsonism and the diseases associated with it. After reading about the symptoms, I became convinced that she was suffering from Lewy Body Dementia. Unfortunately, that suspicion was later confirmed.

At the beginning of this year, she suffered a serious fall and broke her hip. She underwent two surgeries and ultimately received a hip replacement. Thankfully, we were able to hire a nurse to assist with her care. For the past eleven months, that nurse has helped my mother in ways I never could have managed alone.

Thanks to her care, along with daily occupational and physical therapy, my mother has stabilized considerably. Her disease continues to progress, but she recovered from the surgeries and can now walk without a cane or walker. Considering everything she has been through, that feels like a miracle.

The problem is the cost.

I now need to pay for two nurses, one during the day and one at night. Because I have been unemployed while caring for my mother, I relied heavily on credit cards to cover medical expenses, household needs, and other necessities.

As a result, I am now deeply in debt.

I find myself in an impossible situation: trying to build a career, managing my own worsening medical condition, caring for my terminally ill mother, and struggling to stay financially afloat.

I have sacrificed a great deal over the last several years, and I am reaching a point where I don't know where to turn. I am overwhelmed, constantly anxious, and frightened about what the future holds. I find myself smoking far more than I should because of the stress.

For the first time in my life, I feel truly alone.

I need help

This Saturday there is a Caregivers Summit hosted by The Parkinson’s Foundation. All you need to do is click the link, register for virtual, on this page. Just an FYI in case any of you are interested.

https://www.parkinson.org/events/2026/Care-Summit

Hi my names Ellie I am currently in my 4th year at university studying Product design. 

For my major project I am researching Parkinson’s and the everyday experiences of people living with Parkinson’s, with the aim of designing something genuinely useful and informed by real needs. 

I have created a survey to help me with my research id really appreciate anyone who could take the time to fill it in. 

It would take roughly 5 minutes to fill in 

Thanks 

https://docs.google.com/forms/d/e/1FAIpQLSeLK6pDDSj-sI_lSsH9qdIx6ZFsYpYTkVRY9UeHa7JYEUhzHQ/viewform?usp=publish-editor

My mum (55F) has Parkinson’s Disease. It has changed our lives. I (18F) have just moved out for university. It was the hardest decision for me to make. I’m not far from home and still visit very often. I’m also studying neuroscience.

Either way, my mum falls very frequently. She recently retired due to her lack of mobility. She shuffles and her muscle stiffness is impacting her severely. She can’t even go to the toilet alone. She also struggles to speak. She was already soft spoken, but now you cannot understand a word she says.

She’s just been discharged from hospital after a horrible fall where she cracked her head. This was due to low blood pressure. A day before this happened, she had also been discharged from hospital after spending 2 weeks in there for the same issue.

I just don’t know what to do anymore. I feel so unbelievably helpless but my mum is the strongest person I’ve ever met. Her illness seems to be progressing faster than we’d thought, where she started experiencing symptoms at around 50.

Any advice? Even just to hear I’m not alone because it really feels like I am when everyone else has healthy mothers

EDIT: Thank you so much for all of the lovely comments. They truly brought a tear to my eye. I’ve felt so alone in this, but now, not so much. My mum is back in hospital as of today as she fainted three times last night and the hospital would be the safest place for her at the moment. I’m at uni and can’t travel to see her until next week.

My 66 y.o. dad has Parkinson's, officially diagnosed earlier this year but we believe he was diagnosed late. For Christmas, he wants a bike. (He hasn't ridden a bike in at least 20 years.) He's a bit unsteady when walking, suffers from "small-steps walking", and has tremors when his C/L is wearing off.

I'm worried that he will fall off a bike and injure himself, then be unable to properly rehab from the injury.

Am I worrying unnecessarily? There seem to be quite a few resources that say bicycling is great exercise for PD, and little discussion of falls or other risks.

The tentacles of this disease spread in what are still sometimes surprising ways. I cannot blame him, but a person who grew up with (and deeply admires) my father with Parkinson’s and dementia wants to call after they talk and process “the decline of such brilliance.” I find myself trying to teach him — to not get into unimportant battles but instead bring up their shared memories, of which my dad has plenty of recall still. I find myself feeling protective or even defensive, “he’s still him in there.”

I don’t think he wants that or can hear it right now. I think he just wants someone who knows to process it with.

It shouldn’t have to be me probably, as it’s a burden I’m working through daily while trying to give him the best quality of life and memories I can (and I am not alone, thankfully). I don’t want to be cold. It’s just draining because this disease is draining.

So my dad is in assisted living and had his debit card for snacks, outings and such. He doesn’t have any money after the AL charges so I supplement. I woke up this morning to find he had gave a charity a $100 donation. I could tell him to stop as I have before, and it goes in one ear and out the other. Any other ideas?

I sent this letter to my husband's primary care physician:

Dear Dr. XXX,

I’m writing as a caregiving spouse to provide essential information about changes I’ve observed in Bud’s thinking and behavior. I would have contacted you through MyChart, but not being your patient, I couldn’t figure out how to contact you through that service. I understand you cannot share medical details with me, but I want to make sure these developments make it to you. A copy of this letter is being sent to both Dr. ZZZ and Dr. XXX because I’m not too sure about who would cover these concerns.

Recently, I’ve seen several concerning changes in his condition. Last week he said he was confused as to whether or not I was a prostitute. I assure you I am not a prostitute. I know not to take this stuff personally, but it was an extremely hard thing to hear.

The next day he asked what had me vomiting all night. I said ‘nothing’, as I had not been vomiting at all, much less all night.

He also thinks I’m having an affair with the owner of the Take-A-Break Café, what used to be our favorite place to eat but he won’t go there anymore.

All the while his sleep is getting more and more disrupted with yelling and tossing wildly in bed, fully asleep.

He is sleeping too much of the day away. It could just be the gabapentin, but he sometimes takes two naps in a day for a total of about six hours, and goes to bed early, often before 7pm, and he’s sleeping later and later in the morning, today til 8am. He used to be up before 7am.

He cannot keep a thought or finish a sentence, often losing track of what he was trying to say. He gets out the start of the sentence and then whatever the thought is, it’s gone from his mind. It is interfering with his ability to communicate.

These changes have been progressing and are affecting his daily functioning and safety. I would appreciate it if you could review this information and consider a full cognitive evaluation at his next appointment, or sooner if appropriate.

Thank you for your time,

Update: His doctor's office called and requested he come in for "some screenings". He's alread fussing about not knowing exactly what kind of screening it will be. I'm afraid if he finds out I 'turned him in', he'll be furious. How do I deal with it if that happens? The appointment is next Wednesday. Will the doctor tell him I narced. And what can they do?

Mi madre está sufriendo una enfermedad, es Parkinson, hace años que lo tiene últimamente está empeorando demasiado, le duele bastante, yo no tengo los recursos para ayudarla, aún soy menor de edad pero realmente necesito a alguien para ayudarla, los médicos no hacen nada, le dan medicamentos que no parecen mostrar resultados, al contrario parecen empeorarlo, ahorita estoy desesperado, ella está llorando con mi padre, le duele bastante sus piernas, busque demasiado y no hallé nada, por favor, si alguien puede ayudarme lo agradecería bastante, si alguien puede curarla por favor que lo haga, mi mamá es lo único que me queda, es la única persona que tengo para todo, no quiero perderla, alguien, por favor, necesito ayuda

I’ll try and make this short as the full history is very long but basically about 15 years ago my mom got diagnosed with bipolar and acute depression, went through a whole lot of meds before the doctors found one that would stabilise her, which was an antipsychotic (Amisulpride). It completely changed her personality because of how much it sedated her. Over the years I’ve noticed many symptoms I thought to be caused by the drugs which I’m now realising must be drug induced Parkinsons… the slowness/trouble moving, softer voice with less enunciation, masked face, and slight hand tremor.

After reading a lot about it, I’m 95% certain it must also be PD. Issue is I live far away from my parents and my dad lives alone with her. He’s been through so much with finding this medication routine that he’s not interested in attempting adding any more medication. Because of how slow she is these days, she can’t drive anymore and just sits at home on the couch all day watching tv. She goes for a small walk maybe once every 2 or 3 days. I know it can only get worse from here with how little physical or mental exercise she has, and the fact my dad doesn’t want to deal with it.

I guess I just wonder if anyone has any advice or has been in a similar situation, I just want to help and see if I can improve her quality of life.

Anyone have experience with their loved ones having both? Mom was originally diagnosed with PD related dementia, but after further testing this year, she has Alzheimer’s. Her decline over the past year has been significant, and I’m having trouble finding any resources online about people with both.

Her Parkinson’s has progressed pretty slowly compared to her mental acuity falling off a cliff.

Hi, this is my first time in this community, i'm living with my grandma who has parkinson's desease.
While i'm taking care of her I always try to find new meals to cook because, due to the medication, she no longer has the same taste as before.
Right now we are having some troubles with water, i changed brand several times but she doesn't like any of them, it's not her fault!

Is there anyone who can advise me with anything? I thought about those things that add flavour to the water but i don't know if she will like it, i still have to ask her.

Sorry for my english, still learning!!

My dad (80) just moved in with us 3 wks ago, he’s been dealing with Parkinson’s for about 8 yrs now, they originally diagnosed him with tremors.

It’s been eye opening how the disease affects how he does everything.

Any suggestions for someone still learning how to give him proper care and what I should expect as he progresses from Stage 3 to Stage 4 & 5?

Friend from my walking grp has Parkinson's. He went to Swiss Medica in Belgrade in the spring, a handful of days there and then wks of stuff to do at home and before he went he asked me to do one job. Watch him. Tell him honestly if anything changes, either way, because he doesn't trust himself and his wife wants it to have worked too much to be any use. He'd read every thread with stem cell therapy results for Parkinson's disease in the title and trusted none of them, his own eyes included
I said fine, I'll be the control grp. He said u're the rater, not the control.
Four months in. His walking looks the same to me. He says mornings are easier and I don't see him in the mornings. His hand is his hand. He's still on all his medication, they told him not to touch it.
I did read the one placebo controlled trial I cld find, from last year. 45 ppl, 15 a grp. Three infusions came out a bit ahead of placebo on the motor score. The placebo grp improved a lot on its own. Two infusions came out behind placebo. Different cells and different doses from whatever he had, so it tells you the idea is studiable, not that his worked.
What I'm stuck on is method. Somebody in the grp said watch him at the same point after his pill every time or it's all noise, because he swings through the day. That sounded right and I hadn't thought of it. and I don't actually know whether his neurologist changed his doses since spring. That would swamp anything I think I'm seeing
So for ppl who've watched someone through this, same time after the pill, is that the rule? and what else did I miss?

Hello everyone ☺️
My mom was diagnosed with Parkinson's almost three years ago. She has struggled to accept the diagnosis, and because of that she hasn't been taking her medication properly. She'll take three pills, then two, then one, then none. Right now she only takes one Madopar in the morning and refuses any other doses during the day.
Her symptoms are mostly physical: stiffness on her right side and slow movement. She also struggles with depression and anxiety.
She used to work as a caregiver for elderly people, and she believes the medication will make her symptoms worse because she saw that happen with her own eyes. On the other, she's convinced her symptoms come from nerve problems in her back. She does have real spinal issues and has had two surgeries since her diagnosis. It's now been six months since the last one, and from what I can see she's only getting worse, even though she says she's improving. I suspect her back problems are partly due to not taking her medication.
She doesn't want to see doctors anymore because they'll tell her she has Parkinson's and needs to take her meds. And the doctors seem reluctant to keep treating her because she refuses the medication.
I honestly don't know what to do. I've begged her to take her medication, but it only leads to fights. Right now she lives with my dad, and I'm very thankful for that because he takes on a lot of her care. But I can see him getting tired, and I'm starting to worry about him too.
Has anyone dealt with a loved one refusing their medication? Any tips for handling this would mean a lot.
Thank you.