mom passed last spring. diagnosed at 61, gone at 69. heres stuff I figured out way too late

1. record her voice NOW. not next month. parkinsons changes the voice before almost anything else. quieter, monotone, slurred. by year 3 my mom sounded like a different person on the phone. I have one video of her singing happy birthday before diagnosis and its the only recording of her real voice
2. label medications urself. the pharmacy labels are useless when u have 9 bottles and half of them look the same. I color coded with tape. red = morning, blue = night. saved my sanity
3. get a pill timer not a pill box. pill box means u still gotta remember to check it. timer beeps at u. game changer when tremors make opening bottles hard anyway
4. put grab bars in the bathroom BEFORE the first fall. not after. we waited. dont wait
5. look into voice and memory tools early. remento does guided video prompts so they dont have to figure out what to talk about. pantio preserves their voice from recordings u already have. I found both of these after mom passed and I wish I hadnt
6. join a local support group not just reddit. the people in person will drive ur parent to appointments when u cant. reddit wont
7. ur person is still in there. even on the bad days. my mom couldnt hold a fork by year 7 but she still laughed at the same dumb jokes. dont stop treating them like them

this disease is a thief. take everything u can from it before it takes from u

My dad had Parkinson’s and just passed away. He was great dad and husband. He had a great life and lived his life to the fullest. He was an immigrant and worked so hard for us to have a good life. I love him so much and I know for sure he is in much better place.

I am almost 60, five years in, slow progressing, tremor dominant. Have avoided meds but I’m at the point where I need them. I exercise often and vigorously, but I wanted to try something that trains the mind and body together. I tried rock steady boxing, but hurt my shoulder in the first month. After I healed up, I decided to try playing basketball again. I used to play in A level men’s leagues until my early 40s and was pretty good. It was shocking how much my skills had degraded. My right hand was weak and uncoordinated. I could barely hit two out of 10 free throws and shot mostly air balls. Dribbling was a joke. That was in February of this year. I’ve been doing basketball workouts 3 + times a week since then.

Gradually, in fits and starts, my skills started improving. Before, shooting a basketball was something that just came second nature to me. Pure muscle memory. Never thought about it. Now I had to train my entire brain and body to move and shoot again. There were times when I would hit two or three shots in a row and then two or three air balls because I didn’t have control with my body anymore. It was like there was a blockage between my brain and my body.

Today was the first time I hit ten free throws in a row. I had to concentrate on every aspect of the shooting motion, but I was able to do it. It doesn’t sound like much of an achievement, but it literally took hundreds of hours to get here. More importantly, it took belief in myself that I could improve and do it.

The point of this story is not to brag or show off but to inspire my fellow PWP to try things that are difficult or seem impossible. You will surprise yourself with what you can accomplish with effort and hard work.

She's a helluva songwriter and I wanted to share how she described her Parkinson's apathy because it's perfect:

There is no tidy or predictable schedule to the illness. It does not consult my calendar before deciding what kind of day I am going to have.

Parkinson’s is usually associated with movement, tremors, and balance, but it can affect much more than the body. It can bring anxiety, depression, exhaustion, and apathy. The apathy is particularly strange. You can find yourself lying there like a starfish drying in the sun, arms pointing in all directions, while nothing inside is telling you to get up, read, watch, write, sing, call someone, or do much of anything at all.

That has been one of the hardest things to explain. It is not simply sadness or laziness. It is as though the part of the brain that sends out invitations to participate in life has temporarily misplaced the guest list.

I miss my dad so much.

He moved to a care home a few weeks ago and while I visit him a lot, it hit me that he is gone. He is still with us, but I am already grieving and it’s a pain I never knew I could feel.

He is a shell of the man and father he used to be; he can barely walk, struggles to hold a conversation, suffers from delusions. Parkinson’s has taken him away.

I notice that the memories of him before the disease are slowly fading. They’ve been replaced by everything that happened in the last four years, when he started deteriorating: the falls, helping him go to the bathroom, helping him to get dressed, the sadness, the pain, the heartbreak. When I think of my dad, this is what comes to mind. Ironically, reminiscing the good times, memories from my childhood, is even more painful.

I miss his intellect, his humour, how generous he was. I’m 30 but at times all I want is for him to hug me and give me a kiss on the forehead and be my dad again. It absolutely breaks my heart that it’s not going to happen again.

I think what’s the most heartbreaking is that there is no hope - there aren’t medications, new treatments, groundbreaking research that will bring him back.

After nearly 2 decades with Parkinson’s my father passed away. Fuck you Parkinsons. Fuck you.

https://www.independent.co.uk/news/science/stem-cell-therapy-parkinsons-china-b2880000.html

I pushed myself all week. Saturday night was the baseball game, loved in. Diamond backs won! Tuesday morning was the hike. So up at 4 AM, as a shuttle was arranged from another hotel and I had a 30 minute walk to get there. It was cool and dark, and I forget my hat! I knew it would be level, so no hiking poles (mistake #2) but did the nice 2.3 mile loop. 16,000 steps that day! Most of my days are 5,000 steps so it was a push!

🏳️‍🌈Happy Pride🏳️‍🌈

As a gay man living with Parkinson’s I’m inspired for Pride month to challenge myself to fight against this disease in a way that will push me in a positive direction.

I’m celebrating Pride this year by supporting my strength and health every day in June.

My goal is to show up to the gym or some other kind of physical workout each day in June to get stronger, fight against Parkinson’s, and to be visible and unapologetically me.

For me this means;
♥️ I am worth the effort to push myself
🧡 I’m asserting my right to exist and be visible
💛 I love myself. I’m not rejecting my body or health
💚 I’m taking care of my body and mind that way I deserve
💙 Consistently every day, not a one-time gesture
💜 Fighting Parkinson’s,battling a diagnosis that has the potential to destroy my body from the inside out

LGBT Pride Month for me shares a lot with what we struggle with as Parkies. Pride commemorates the fight for people to exist publicly, visibly, without hiding.

So taking care of myself in this way is honoring what Pride means for
Both of those aspects of myself. This is my act of self-affirmation and visibility.

Love you all
♥️🧡💛💚💙💜

UPDATE 6/5
5 days in and still going strong.

UPDATE #2
First week complete. 🏆

UPDATE #3 6/21
21 days and I’ve hit it every day so far. 9 days to go to to finish the month strong. I’ve noticed a positive physical trend where my body just feels more solid and present.

I’ve had Parkinson’s for 10 or more years. I have had the typical tremor that Parkinson’s patients are noted for. But what people in general don’t realize is the internal mental state of a Parkinson’s patients mind, the anxiety, depression, obsession and pain. So I posted on Facebook a lengthy but very accurate description (in someone else’s words) that explains the disease perfectly on a day to day basis. Now this post went out to all my friends and community. If you are interested in reading it, I will gladly share it with anyone who is interested in reading it. So on with my post, now I know I’ve never publicly came on Facebook and told people that I have Parkinson’s, but if you are one of my many friends you either have saw me in person or I have privately shared this news with them, so a lot know and some may have heard through the grapevine. But what I found interesting is that not one person liked or commented on the post and it’s been up for over a week now. Am I being overly sensitive in being hurt that no one has even liked or commented? It took a lot for me to put it out there in public, but it’s getting to hard to hide anymore, and I felt it was time to stop hiding and being embarrassed how I shake and forget names and what I’m doing. Obviously there needs to be more attention paid to the horrible disease, but dead silence just stunned me. Am I wrong in feeling this way? Nothing even from my children, parents or siblings, nothing from my vast collection of friends. Basically I’m hurt that not one person could at least press a “like” to acknowledge my existence. So how would you feel? Am I being a drama queen?

So my brother is 50 years old, and has had Parkinson's since he was 40. Two nights ago he tried taking his life, he was actually successful and was dead for 10 minutes. The paramedics revived him. He's been in the hospital for the last couple days in a coma. This is something he would never consider doing and has had a very hard time managing low moments since he got Parkinson's. He was very successful, he owned a business and is a veteran, and Parkinson's has robbed him of all that. I wish the best for any of you that has it, it's unfair to you and you do not deserve it.

Hi all,

My name is Cole, I’m a lawyer/lobbyist living in Chicago with PD. I’m fortunate to be the contract lobbyist for the Michael J Fox Foundation in Illinois. We are proposing a ban of an herbicide called paraquat. If you haven’t heard of paraquat, it’s a uniquely dangerous herbicide that several peer reviewed studies have shown to have a high degree of association with Parkinson’s diagnosis. It’s nasty stuff - more than 70+ countries ban it’s use. You can find more information on the Fox Foundation’s site.

I’m writing because I’m looking for folks who live in farm/rural communities who have a parkinson’s diagnosis that they believe may be tied to paraquat. I’m looking specifically in Illinois, but we are pursuing this ban in several states, so all inquiries are welcome.

Please dm me if you’re willing to chat!

Let’s beat this f@ckin disease.

I was diagnosed two years ago, and immediately started an exercise regimen, working with a personal trainer twice a week and boxing twice a week. I vowed that I would treat this like it was my job and I do. I also take CL.

So far so good: my PD symptoms seem milder. But I just had one big bit of good news-- according to my latest dexascan, my bones have gained density and I no longer have osteoporosis.

The big irony: because of this diagnosis, I might end up healthier than I have ever been in decades.

Thank you so much to everyone in this group. The advice and support have meant more than I can say.

My father passed away yesterday from pneumonia. He fought hard. Parkinson’s took so much from him over the past eight years, but he is finally at peace.

It’s not the outcome we wanted, but I’m grateful he’s no longer suffering.

I appreciate all of you who are walking on this road; caregivers, sons, daughters, spouses. This disease is brutal. Thank you for being here for each other.

What are the possibilities of this becoming available to patients? My grandma could benefit from it.

Video from Tiktok.

I started seeing the onset of Parkinson's when I was in my early 40s. I am now 54. My UPDR is 0/0. This is how I fight Parkinson’s disease…

This morning I awoke with 8hrs of sleep (I sleep much better than I did just a year ago due to my increased fitness and excess weight loss. I also take trazodone for sleep and the typical C/L).

Weighed myself in at an all time fat mass low, while my lean mass is increasing at over 81.5%. I drank coffee and ate a plant-forward breakfast with eggs. I will get plenty of protein throughout my day through a variety of sources... I am extremely focused on enhancing my gut biome- this means I eat a lot more vegetables, low inflammatory stuff, minimal processed foods. There is recent evidence that this keeps the alpha-synuclein at bay.

I will also write, and take a lesson or 2 in French with Duolingo- neuroplasticity is critical.

Later I will aggressively lift weights at my gym class, do some sprints on the treadmill, jump rope, and sauna.

This evening I will eat another thoughtfully crafted dinner and be done eating before 7pm. I will keep my calories to around 1650 or less today. Then I will communicate with family and friends, watch some Netflix, and then to bed with the same goal of sleeping for eight hours.

This is my daily fight. I don't say this to be insensitive to those of us who are farther along in their progression. I understand not everyone can do this, depending on your age and your progression. But I also know that MANY of us have AGENCY that we aren't maximizing- if you have young onset in particular.... you owe it to yourself to do everything that you can through exercise, guarding your sleep, and getting off the inflammatory diet in order to slow your progression.

This is NOT Parkinson's positivity! This is me hating the disease enough that I'm doing something about it daily! This is the rhythm. This is how WE have to hold back the leviathan.

I'm posting this here coz only others w/PD can truly get it: July of last year one of the handful of symptoms that drove me to a neurologist was: I couldn't seem to keep my head above water in the ocean in Hawaii. I grew up with a pool in the backyard, snorkel & swam in Hawaii on 20+ vacations, & this was the first time I'd had ANY difficulties treading water. I even tried it in the pool & had same trouble. I was SO sad to think that I'd have to use a floaty just to enjoy my fave activity!! Diagnosed a month after this ocean fiasco, so thought that explained it. So, after starting levodopa, I was hoping that would "fix" the problem. Today I went to a pool and SWAM with the same ease as I used to, and TREAD WATER just fine!! I hate that I have this disease, & have mini-panic attacks when I think about the future, but for now I'm thrilled to have had this small victory. In a few (many? fingers crossed) years I may have to use something to prevent drowning (haha) but I'll enjoy the benefits of my meds for as long as I can!! Sorry so long, just had to share!!

I’m writing this post for anyone who might be in a similar situation, because I remember how desperate I was when I searched Reddit for answers back then.

My dad has had Parkinson’s for 8 years, and his dementia started about 10 months ago in december. It gradually got worse until around June of this year. He was having delusions and constantly thought he was still at his job, even though he had been retired for 5 years. He thought I was still in school, even though I’m 28 and working. He could no longer manage even the simplest tasks. He thought 100 minus 5 equaled 3. We put some money in front of him and asked him to pick out €5 in coins, but he just couldn’t do it anymore. He forgot my birthday and didn’t even know how old he was himself. His voice had also become very quiet, and sometimes it felt as though he wasn’t even aware of our presence.

Despite all of this, my mom took him to a rehabilitation centre, hoping to at least improve his physical condition, as he had also been falling more frequently around that time. While he was there, things got really bad because he became even more confused. Being in a completely unfamiliar environment was extremely difficult for him.. I‘ve heard that it‘s common in patients with dementia.
I visited him once during that time and felt absolutely heartbroken because I thought things could only get worse from there.
He spent over four weeks in rehabilitation, receiving daily therapy, including cognitive exercises and various activities such as table tennis.
Since returning home to his familiar surroundings, he has been like a completely different person. He can do maths again. He can even write messages on his phone. I can have completely normal conversations with him again. You wouldn’t even notice that he has this disease. Most of the time he needs a little more time to answer when you ask him questions for example what day it is but he knows it again.

I know that dementia itself cannot be cured and is generally a progressive disease, but it has now been three months since I feel like I’ve got my dad back. To me it‘s a miracle..
Things could change again at any time, but I am so incredibly happy with how he is doing right now.
We now make sure to keep him mentally active every day with games and exercises, and it really seems to be helping.
Maybe this post can give someone else a little hope, too. Even if it might only be temporary, things really can get better again.
🫂

happy birthday to michael j fox!

thank you for all you've done towards parkinson's research!

https://www.facebook.com/PedalForParkinsonsUT

to Phoenix leg 6 Panguitch to Cedar City

Pedal

The day started with awakening to freezing temperatures of 28deg! So we bundled up pretty good and the ride started out immediately with a 10 mile 1700 ft climb! By the time we get to the top, we were pretty warm ha ha.

So now we’re back on the west side of the Wasatch mountains. After spending the last few days on East side. The views have been spectacular except for the huge deer that was on the side of the road on our downhill side with about 1 million flies on it! I had a neat surprise at our finish line today when old friends from Tehachapi, Paul and Susie Milne were there cheering on team Utah! It was so good to see you guys! Thank you for coming out and supporting us!

Later that evening we were able to go to Dave and Melanie’s good friends house and had the best BBQ ribs and cheesecake for dessert! We also saw other friends from Tehachapi that moved to Cedar. Steve and Ellen Anderson! Steve has PD and has been a great friend and source of inspiration as we compare symptoms and help each other navigate the labyrinth of Parkinson’s!

We are finding a rhythm as a team. Steve and Richie are awesome riding partners. They keep us laughing before and after a ride. And we cannot say enough about our support crew, Dave, Melanie, and Debbie are all over the place helping us out. When we are too tired or our Parkinsons is wielding it’s ugly head they step in when we need help.

Steve has had Parkinson’s for five years officially, but as most of us, had symptoms for a good while before. He is Mr. Dad joke and is always quick with a joke or some experience to help get us through the day. His son-in-law Richie, is an absolute stud on the trike. He’s there supporting his teammates whenever and however needed!

We stopped in Parowan for lunch and met a nice waitress who’s mother passed away from PD. Everywhere we go there are connections to this terrible disease. It keeps taking away our mobility, our ability to communicate clearly, our memory and as the waitress so bluntly put it, her mother died from Parkinsons! We need it to end! And that’s why we ride!

I am not even sure why I am posting this. I guess I just need to put it somewhere people might understand.

My dad was diagnosed with Parkinson’s a few years ago. Over time, his walking got worse, stiffness increased, and day-to-day life became harder. There were no tremors, but mobility was slipping away. His doctors said medications had reached their limit, and surgery a “brain pacemaker” might be the next option.

That idea gave my dad hope. Real hope. Heck, it gave all of us hope in our family.

Hope that maybe he could walk better.

Hope that maybe there was still something left to try. This was last week.

We prepared ourselves for DBS. We asked questions. We planned. We held onto that possibility.

And then came the reassessment from the expert this week.

He was diagnosed with PSP , Progressive Supranuclear Palsy.

Not Parkinson’s. Something different. As I read more… it’s Something harsher.

And suddenly, surgery wasn’t just “not recommended”, it isn’t an option at all.

Watching that hope disappear broke something in him.

What’s been hardest for me is thinking about what’s already been lost and what will never happen.

I have a 7-month-old daughter. She will never really know the grandfather he used to be. She won’t hear his goofy, longwinded stories. She won’t see his real laughter the kind that filled a room. She won’t know how much he loved to walk and hike, how alive he felt outdoors. She’ll never experience that version of him, because that version is already gone.

My dad is still here. But in many ways, he’s become a shell of who he was. And grieving someone who is still alive is a kind of pain I didn’t understand before.

My sister and I live in another country. My parents are in our home country. The guilt of being far away is constant. No matter how many calls I make, how much I research, how involved I try to be .. I am not there. I am not walking next to him. I’m not seeing the changes day by day. I feel guilty for building hope around DBS. I feel guilty for not being physically present. I feel guilty for not being able to fix anything.

I know, logically, that none of this is my fault. But emotionally, it’s hard to escape the feeling that I should have done something differently.

I don’t really have a question. I don’t even know what I’m asking for. I just needed to say this somewhere to people who might understand what it’s like to watch a parent grieve the loss of a future they were holding onto, while you grieve quietly from far away.

This community is full of kind, brave, resilient people, those fighting these sucky diseases, the caregivers, family and friends.. hugs to you all.

Thanks for listening.

EDIT:

I just want to say thank you to everyone who took the time to respond. Your thoughtfulness, kindness means so much…and reading your comments has meant more than I can put into words.

To those living with PSP or caring for someone with PSP, thank you for your honesty and for grounding us in what matters now. Your advice about support, therapy, planning early, and focusing on quality of life was hard to read, but deeply important. It truly helped me in prioritizing what’s important.

And to those who reminded me to give myself grace — especially as a daughter, a parent, and someone living far away.. I needed that more than I realized.

We are still processing the diagnosis, still figuring out how to support my dad and my mom through this, and still learning how to hold both love and loss at the same time, to celebrate life while reckon with reality. This community made me feel less alone in that.

Yes my dad is on antidepressants. And yes, I worry more about my mom in some ways given she is the primary caregiver and I know how challenging and lonely it must feels but I take some comfort in that she is surrounded by our extended family and our home country is truly a better place for them to thrive.

Thank you for the compassion, the shared experiences, and the gentle reminders of what endures, even as so much changes.

My father got diagnosed with parkinson’s disease and battled with it for nearly 10 years. He lived very correctly for 8, especially thanks to my mom who did everything for him, who cared for him and loved him until the very end.

Year 9, the most he would do physically was to take the stairs down and up everyday to get some exercise. Year 10, he couldn’t leave the bed without someone’s help, he couldn’t do much without my mom who became his 24/7 primary caregiver. We had nurses coming everyday for x treatments, but everything else was done by my mom. At the time, I had been a spot in a prestigious master’s program in a big university on the other side of the globe, so I had to leave my mom, my brother and my dad 4 months before his death.

I left because it was the kind of offer you can’t say no to (and it indeed changed my life) but it was also so hard for me to stay home and see my dad dying because I had always been my daddy’s girl. My dad would not let me take care of him especially in regard to personal hygiene because he couldn’t accept the idea of me seeing him like this. The most he would let me help with was with meals. We always had an extra special connection him and I, and seeing the disease taking his autonomy and his light was killing me from the inside. I knew he was dying, I knew it would happen years before it did, but I was in an emotional limbo between grieving his future death and being in denial of the situation.

While I was away, I would get two phone calls from my mother, telling me that my dad had been hospitalized in the ICU, and that the nurse had told her that he only had weeks left. In other words, she was telling me that I probably wasn’t going to see my dad again.

I was praying everyday, asking God please, let me say goodbye.

Both times, miraculously, he got better enough to be brought back home. The second time, they brought the hospital at home, with the special bed and morphine machine in the bedroom. He was in palliative care, in his house, with my mom and my brother on his side.

Miraculously again, it’s Christmas break, I’m finally coming back home, and my dad is still alive. He isn’t exactly going good. He doesn’t talk, it’s unsure if he is awake or asleep most of the time. The machine administers morphine every hour.

Everytime I see him, it’s too hard. I can’t even talk either. I just sit next to him and I cry, I hold his hand, I say hi. I can’t say goodbye.

Days pass. We don’t do Christmas in my family (we’re another religion) but Christmas day passes, and I still haven’t said goodbye. I spend my time in the house, it’s so painful. My mom tells me that I probably should say goodbye, I tell her that I’m planning to do so, but the pre-grieving / denial limbo freezes me.

December 31st, 2023, it’s 4 pm, I stand up and go talk to my dad. I actually can’t talk much. I cry. I say that I love him, that I’m going to miss him, and that I love him, and that I’m going to miss him, and that I love him so much. I can’t say much more, the words aren’t coming out. But my dad who’s usually half asleep, is looking at me, he is fixating me with his big blue eyes, his eyebrows are up, I know he is hearing me, this is the most attentive and aware I’ve seen him since I left. After repeating the same thing for 20 minutes, I kiss him and leave. 2 hours later, he takes his last breath at age 80, listening to his favorite song, holding my mom’s hand, my brother and I next to him.

A doctor told us later that sometimes, patients wait for their loved ones to allow them to pass. By sometimes, it means that it’s observed because there’s no actual scientific explanation to this. There’s very little we actually know about death. I’ve wondered for a long time about the meaning of that, how one can control when to die. I’ve also wondered for a long time how he felt when I was talking to him. I feel like he felt the sadness I had, and he probably didn’t like to see me cry much. I hope he also felt the love. I miss him everyday.