Parkinson's Disease - Anyone have any experience with it? (1 Viewer)

[CHEF]

I was recently (about a month ago) diagnosed with Parkinson's. I'm only 53 which is considered young and early to be diagnosed with it. I've started taking medication to control the tremors that I only have in my left arm right now. I know that pretty much everyone with Parkinson's can have a different experience with the disease, the progression can vary, and the treatments can vary. So, I thought I would ask if anyone here has been diagnosed or has friends or family that has been diagnosed and what their experiences have been. I've checked out the Michael J. Fox Foundation and a few others online but you know how "online" research can be just a rabbit hole. Does anyone have any positive experiences? I know, it's a disease, how can anything be positive? Maybe you know someone who was diagnosed but the disease never really effected their normal daily life. Right now I would say the only effect it has had on my life has been taking meds as I mentioned and seeing a neurologist. I think my wife is taking the news harder than I am right now.

 

[AAABatteries]

No experience but just wanted to say good luck and hopefully you are able to manage your symptoms.

 

[CHEF]

No experience but just wanted to say good luck and hopefully you are able to manage your symptoms.

Thank you, I appreciate it.

 

[Mrs. Rannous]

I've checked out the Michael J. Fox Foundation

Stick with this. He has been a rock star for this.

Best wishes.

 

[northern exposure]

My brother was diagnosed with Parkinson's about 20 years ago when he was in his early 40s. I say diagnosed, but back then it was basically a process of elimination to determine what was causing his symptoms. He was moving slowly and when you spoke to him, it took him a while to reply. They thought it could have been a stroke, a brain tumor, etc. When tests showed it wasn't those things, they tried him on a cocktail of meds used to treat Parkinson's and his symptoms improved.
To this day, he doesn't have any tremors. He moves slowly and at times appears out of control when he's walking. His speech is strained at times and it takes him a while to respond during conversations. He sometimes has difficulties swallowing.
He had a physical job and had to go on a long term leave when he was diagnosed. He still drives though.
I think the latest symptom he has mentioned is insomnia or disrupted sleep. He will wake up at midnight and not be able to go back to sleep. Then the next day he will become exhausted and have to crash.

I hope that was somewhat helpful. If you have any questions, let me know.

 

[BobbyLayne]

My FIL had it for over 20 years. As I am sure you are acutely aware, it is insidious. He was bedridden and unable to move or speak when I met him. Was a terrific athlete (tennis + there must be 75 golf trophies around the house) and a successful entrepreneur; stand up guy, pillar in his community. Although he was unable to acknowledge me, I still asked him for his permission to propose to his daughter. He passed within two weeks; we feel like he was finally at peace knowing both his girls were loved.

My 81 year old MIL was diagnosed last year. She is still able to live in her own home. We made a few adjustments, installing about a dozen cameras so we can monitor her. We have home health aids for 84 hours per week and she is well cared for by her community. Her neighbor checks on her daily and stays in continuous contact with me via text. Mom goes to a senior center each weekday, receives meals daily from her community of faith, and attends services on weekends. She has friends over often. We take her to the doctor each month and thankfully it hasn't progressed so far.

My own father had it for 6-7 years. The first year was rather shocking how much he slowed down, but then things kind of stabilized for several years. Up until the last few months he was still lucid. His physical abilities did decline sharply after 5 years. Grateful for the time we had to create memories and say everything we ever wanted to say to him.

IME it is very much a ICB experience - it's a little bit different for everyone.

Thanks for sharing your story @CHEF - my wife and I will keep you in prayer. Please feel free to ask any questions, whether it's here or via DM if that feels more comfortable.

Hoping for the best for you.

 

[BroncoFreak_2K3]

My Mom had it for about 20+ years. Her brother got it right after he came back from the Pacific Theater in WW2, so it apparently runs in the family.

She was diagnosed in her 60's. I would say her last couple of years, she slowed way down. About in her mid-70's we got her a mobility cart which was terrific for her. She lived most of these years on her own. About ten years before she passed, we moved her into an assisted living facility. She still was fairly mobile in her 70's but needed help with bathing for the most part. She took a range of medications, but I think most were heart-related. I would say she lived as good a life as she could considering her issues. She had slight tremors. Her right side of her body was much stronger than her left. She ended up passing away with congestive heart failure at age 83 during the height of the COVID pandemic (she had heart issues for many years).

Good luck and I will be thinking of you and praying for you. The MJ Fox Foundation is a terrific idea.

 

[thecatch]

Unfortunately I have experience with several relatives battling this. The one thing I can say is that research seems to be showing the importance of exercise in slowing the progression of the disease. And it's important for retaining mobility. The family members that have had the worst time have also really failed to take care of themselves physically (which is easy to do given the discomfort they are in).

 

[BroncoFreak_2K3]

Agree with the above, exercise, even in small doses is very key

 

[Payne]

Good luck and take care!

 

[Peak]

My dad was diagnosed with Parkinson's about 8 years ago. It's been a downhill journey with him. Tremors started with his right hand, progressing up his arm and then his entire right side. Head began soon after. Just recently his left hand/arm have started. It's been rough watching him go through this and not being able to help him with it. He's on medication and physical therapy/exercise regime. He has his good days and his bad days. The hardest part for my mother and I has been his physicality decreasing over the years. We expected some fall off, but I feel like it just happened overnight after living with it for a couple of years. He's started slowing down, taking shorter strides. Now he shuffles along like Tim Conway's "Old Man" character from the Carol Burnett Show. He uses a walker now, whereas the last couple of years it was a cane. He falls almost constantly. He's broken a hip (twice), had a concussion, and stitches on his arms, head, and legs from falling.

Good luck and take care of yourself. Exercise definitely helps to slow it down. This was something my dad didn't do enough of when he had the chance. He'd walk, but not much more than that.

 

[Jutz]

My FIL was not officially diagnosed with Parkinson's but he ended up contracting COVID at least 2 times, walks with a shuffle, and needs a rollator to walk. Doctors say he has 'Parkinson-ism'. Where some of the symptoms are there, but not an official diagnosis.

Regarless, I came in here to post that he recently started a new Physical therapy program that looks to be promising. Not sure if it will help you in any way, but it might be worth looking into. One program is called BIG and one is called LOUD. I think he may be doing both. Check out this LSVT website: LSVT Global

He just started yesterday, but both my wife and I feel like in that one day we saw a difference compared to any of the previous treatments he has been through... both physical therapy and medication.

 

[coopersdad]

My mom was diagnosed with it about 10 years ago. She took her meds and for the 1st 5 or so years you could not tell a difference. After that she started to walk slower (shuffling) and started having tremors in her right hand. Spring 2023 she fell and broke her knee, which led to her falling againg and breaking her hip. She had to have surgery to repair her hip. Probably the worst thing that could happen as from what we've learned is that Parkinson's and anesthesia do not play well together. She came out of the surgery mentally totally different. Angry all the time. Seeing things that didn't exist (pictures on the walls were now places that monsters came from, lint on her sheets, food on her fingers). She lasted about 4 more months basically withering away. She eventually got to leave the hospital and go to the assisted living facility that we had set up 8 months before when she had originally broke her knee. She got to spend 3 weeks there and on one Saturday in October (when it had cooled down here in Texas).........we went out side for a walk and watched the sunset. The next day we had to call hospice, and 4 days later she passed.

Good luck and enjoy your time. Do all you can do, as you'll never know when you won't be able to anymore (basically everyone should live this way as costs allow).

 

[nirad3]

My uncle has it and is doing his best to fight the good fight. Dude was in 'Nam and is one tough cookie but he's having a rough go of it.

Hoping the best for you, OP, and sounds like there have been some amazing advancements in medication and therapy over the past few years so hopefully those help you out.

Wishing you the best.

 

[Mrs. Rannous]

On Sept 5, The Washington Post had an article on Parkinson's. It is behind a paywall, but it mentions the study published in JAMA linking Parkinson's to damage in the gut. This article is not behind a paywall.

 

[TwinTurbo]

My FIL was diagnosed in 2019 and it progressed rapidly, getting covid really hurt him too. He is doing his best but requires around the clock care. The diagnosis went from Parkinsonism to Parkinsons and eventually to Multiple System Atrophy which progresses much faster than Parkinsons. Your best hope is that it progresses slowly which seems to be the case for many folks.

We have tried everything under the sun, no expense spared. There is no cure and diet + exercise are probably the best options to keep it in check. Hyperbaric oxygen therapy helps some people too. I feel that red light therapy also helps.

 

[foxco]

Echoing what others have said, exercise is so important. My FIL has had it for about 12 years and while you can tell he's moving slower, he's still able to get around reasonably well. He goes to occupational therapy twice a week where they work him hard. I bought him a Quest VR headset with boxing and a couple of games and he does this every day (with his wife spotting him) to stay active (he won't go to the gym but apparently video games are okay.) He was also really stressed about it so a couple of years ago he started taking mild anti-depressants and it's helped tremendously with his anxiety. All the best.

 

[Peak]

So another question for those who have family members with Parkinson's Disease.

My dad is about Stage 4 (trouble walking, poor balance, etc) and has started having hallucinations. Not just one or two episodes, but multiple episodes daily. It just happened almost overnight. He had a motor skills problem last week where he couldn't move. Couldn't get himself dressed. Couldn't feed himself. It was very odd, like someone just flipped a switch overnight. Day before he was fine. Next morning, nothing. While waiting for EMTs to get there to take him to the hospital, he started telling my mom that he saw people in the house. These people were from his childhood. Needless to say, it freaked my mom out. Doctors thought it might have been brought on by conflicting medications. They removed an anxiety medicine he was on (I have no idea why he had it, but that's a different story). A few days after he stopped taking it, the hallucinations went away.

This was about 5 days ago. I visited him last night to check up on the situation and he's moving around on his own. Walking around the house like there was no problem. Just yesterday he couldn't stand up. I was shocked. As soon as he saw me, he stood up and said let's go. I asked where we were going and he told me the Sherriff's office because he won a Yamaha Motorcycle with a red light. I looked at my mom and she just shook her head. His hallucinations returned. This time they are more involved and they are many. Mom said it's now happening consistently overnight to where neither of them can sleep. He sees people every where. I counted about 6 episodes while I was there yesterday over a 3 hour span. I received a text this morning from my mom that last night was worse than the night before with even more hallucinations, this time with my dad showing anger and hate towards her.

Has anyone else experienced this? I'm struggling with it. He sounded great when I talked to him 3 days ago, and yesterday he was there but then was somewhere else. With him showing anger towards my mom, I'm thinking he could get violent and not know it / not mean it. He's not a violent person, but if he's starting to believe what he thinks he's seeing or making up, how do you deal with it? I offered up the idea of putting him, or both of them, in an assisted community where he can get round the clock care. Mom isn't interested in that.

They are talking to a doctor today. I want to help both of them, but not sure what to do. I leave a couple hours away, so I can't be there every day. No other siblings, but some other family members are near them to help - but again not every day. Not sure what I should do, or can do at this point.

 

[SWC]

good luck and best wishes peak i hope nothing but the best for you and your father and family and the same goes to chef and im sorry i missed this thread and did not say that already take care guys and god speed

 

[thecatch]

So another question for those who have family members with Parkinson's Disease.

My dad is about Stage 4 (trouble walking, poor balance, etc) and has started having hallucinations. Not just one or two episodes, but multiple episodes daily. It just happened almost overnight. He had a motor skills problem last week where he couldn't move. Couldn't get himself dressed. Couldn't feed himself. It was very odd, like someone just flipped a switch overnight. Day before he was fine. Next morning, nothing. While waiting for EMTs to get there to take him to the hospital, he started telling my mom that he saw people in the house. These people were from his childhood. Needless to say, it freaked my mom out. Doctors thought it might have been brought on by conflicting medications. They removed an anxiety medicine he was on (I have no idea why he had it, but that's a different story). A few days after he stopped taking it, the hallucinations went away.

This was about 5 days ago. I visited him last night to check up on the situation and he's moving around on his own. Walking around the house like there was no problem. Just yesterday he couldn't stand up. I was shocked. As soon as he saw me, he stood up and said let's go. I asked where we were going and he told me the Sherriff's office because he won a Yamaha Motorcycle with a red light. I looked at my mom and she just shook her head. His hallucinations returned. This time they are more involved and they are many. Mom said it's now happening consistently overnight to where neither of them can sleep. He sees people every where. I counted about 6 episodes while I was there yesterday over a 3 hour span. I received a text this morning from my mom that last night was worse than the night before with even more hallucinations, this time with my dad showing anger and hate towards her.

Has anyone else experienced this? I'm struggling with it. He sounded great when I talked to him 3 days ago, and yesterday he was there but then was somewhere else. With him showing anger towards my mom, I'm thinking he could get violent and not know it / not mean it. He's not a violent person, but if he's starting to believe what he thinks he's seeing or making up, how do you deal with it? I offered up the idea of putting him, or both of them, in an assisted community where he can get round the clock care. Mom isn't interested in that.

They are talking to a doctor today. I want to help both of them, but not sure what to do. I leave a couple hours away, so I can't be there every day. No other siblings, but some other family members are near them to help - but again not every day. Not sure what I should do, or can do at this point.

My dad had a 4-5 day stretch of bad hallucinations. We were pretty scared it would be a permanent thing that would have required some alternative living arrangements. But the doctors switched his medication around and they went away - it’s been a couple years and they haven’t come back (knock on wood).

 

[Peak]

So another question for those who have family members with Parkinson's Disease.

My dad is about Stage 4 (trouble walking, poor balance, etc) and has started having hallucinations. Not just one or two episodes, but multiple episodes daily. It just happened almost overnight. He had a motor skills problem last week where he couldn't move. Couldn't get himself dressed. Couldn't feed himself. It was very odd, like someone just flipped a switch overnight. Day before he was fine. Next morning, nothing. While waiting for EMTs to get there to take him to the hospital, he started telling my mom that he saw people in the house. These people were from his childhood. Needless to say, it freaked my mom out. Doctors thought it might have been brought on by conflicting medications. They removed an anxiety medicine he was on (I have no idea why he had it, but that's a different story). A few days after he stopped taking it, the hallucinations went away.

This was about 5 days ago. I visited him last night to check up on the situation and he's moving around on his own. Walking around the house like there was no problem. Just yesterday he couldn't stand up. I was shocked. As soon as he saw me, he stood up and said let's go. I asked where we were going and he told me the Sherriff's office because he won a Yamaha Motorcycle with a red light. I looked at my mom and she just shook her head. His hallucinations returned. This time they are more involved and they are many. Mom said it's now happening consistently overnight to where neither of them can sleep. He sees people every where. I counted about 6 episodes while I was there yesterday over a 3 hour span. I received a text this morning from my mom that last night was worse than the night before with even more hallucinations, this time with my dad showing anger and hate towards her.

Has anyone else experienced this? I'm struggling with it. He sounded great when I talked to him 3 days ago, and yesterday he was there but then was somewhere else. With him showing anger towards my mom, I'm thinking he could get violent and not know it / not mean it. He's not a violent person, but if he's starting to believe what he thinks he's seeing or making up, how do you deal with it? I offered up the idea of putting him, or both of them, in an assisted community where he can get round the clock care. Mom isn't interested in that.

They are talking to a doctor today. I want to help both of them, but not sure what to do. I leave a couple hours away, so I can't be there every day. No other siblings, but some other family members are near them to help - but again not every day. Not sure what I should do, or can do at this point.

My dad had a 4-5 day stretch of bad hallucinations. We were pretty scared it would be a permanent thing that would have required some alternative living arrangements. But the doctors switched his medication around and they went away - it’s been a couple years and they haven’t come back (knock on wood).

I'm hoping it's something similar. He has a long list of medications, which his In Home Nurse called him a Pharmacologist's Retirement Fund. Aside from Parkinsons, he had his liver replaced. So he's on blood thinner, BP meds, his Parkinson's meds, this odd anxiety meds (having parkinson's made him irritable and twitchy? really?!?), and a few others. Trying to navigate side effects and conflicts is a nightmare. I'm hoping they find the right balance.

 

[fatness]

So another question for those who have family members with Parkinson's Disease.

My dad is about Stage 4 (trouble walking, poor balance, etc) and has started having hallucinations. Not just one or two episodes, but multiple episodes daily. It just happened almost overnight. He had a motor skills problem last week where he couldn't move. Couldn't get himself dressed. Couldn't feed himself. It was very odd, like someone just flipped a switch overnight. Day before he was fine. Next morning, nothing. While waiting for EMTs to get there to take him to the hospital, he started telling my mom that he saw people in the house. These people were from his childhood. Needless to say, it freaked my mom out. Doctors thought it might have been brought on by conflicting medications. They removed an anxiety medicine he was on (I have no idea why he had it, but that's a different story). A few days after he stopped taking it, the hallucinations went away.

This was about 5 days ago. I visited him last night to check up on the situation and he's moving around on his own. Walking around the house like there was no problem. Just yesterday he couldn't stand up. I was shocked. As soon as he saw me, he stood up and said let's go. I asked where we were going and he told me the Sherriff's office because he won a Yamaha Motorcycle with a red light. I looked at my mom and she just shook her head. His hallucinations returned. This time they are more involved and they are many. Mom said it's now happening consistently overnight to where neither of them can sleep. He sees people every where. I counted about 6 episodes while I was there yesterday over a 3 hour span. I received a text this morning from my mom that last night was worse than the night before with even more hallucinations, this time with my dad showing anger and hate towards her.

Has anyone else experienced this?

Yes, unfortunately, with my mom. Dad died in 2008 at which time mom already had the hand shaking thing from Parkinsons. For the first year or two after he died she was fine, even well, got more active and involved with people. But then her understanding of her world starting decreasing markedly --- piling months of mail on the dining room table and putting a tablecloth over it and inviting her regular group to play cards on it, standing in a grocery store staring over 20 minutes at rotisserie chicken, starting to isolate herself due to increased hand shaking. She had to move to from independent living to assisted living and that was good for several years, and then as things got worse she started isolating again and had to move to personal care unit. Same pattern, good for awhile until symptoms got worse and she started getting violent. She injured a couple staffers and was put in the locked nursing care unit. She did OK there for awhile, but again got increasing symptoms and started isolating herself. She could not understand what was said to her, mistaking compliments as critical attacks. And she got more violent; it was taking 3 aides to do routine morning care on a 90-year-old woman who stood 4'11" and weighed 135. She would sit in her wheelchair or chair and flail away with arms and legs at the aides who were being extremely polite while dodging blows. Eventually enough staff refused to work with her that the retirement community had to put her in a geriatric psychiatric hospital for 6 weeks, and after she refused to eat or drink put her in hospice where she died in 2022. I do wish she had died a couple years earlier, because she never understood what was going on around her those last years, and was confused, angry, and unhappy all the time. That is no way to live.

BUT, she got 14 years after dad died until she did, and at least 12 of those years contained some good times. I wish you the best.

 

[Peak]

That's rough @fatness , thanks for sharing.