r/Parkinsons

Hello Everyone,

My father (aged 79 years) has mobility (he can walk, but it is shaky and can call) and speech difficulties due to Parkinson's disease, since the last 8 years. The Neurologist days it can't be cured, but can be managed with regular use of Parkitidin and Levadopa.

Please let me know what else can be done to help him improve his mobility and speech difficulties. Are there any alternative therapies for it.

Thank you.

Hi there,

I am just curious if someone can help me with my thoughts. My Dad is 76 and is in late stage Parkinsons. He can still walk, talk and do the odd things like picking up food but requires 24/7 care and help with most day to day tasks.

I am his primary carer and look after him day and night at the moment. One of the things that wears me out a bit (I hope I don't sound horrible for saying that) is that he is in his "off period" he absolutely insist on immediately going for a walk around the house or going to the toilet and gets visibly distraught and keeps mentioning it constantly until we take him. 90% of the time this is not an issue but sometimes it can be really frequent like every 10 minutes which can get really exhausting as I am not only having to constantly get him up and down but am also getting up and down to do other things so sometimes I don't have half an hour to sit down in a day.

What I have come to notice is that the distress, pain and anxiety seem to vanish or at least subside as soon as we get him up for his walk or like when he is sitting on the toilet. I used to suffer from panic disorder myself when I was younger and I remember how I always wanted to leave wherever I was whenever I had them and would freak out until I could leave the room/place (proper fight or flight).

So I am starting to wonder if these episodes aren't so much that he is in a huge amount of pain but is more a bit if pain and discomfort but mostly just the pill withdrawal causing a huge wave of anxiety. Knowing which it is could really help me with working out how best to help him. I have spoke to his Specialist and Nurses about this but sadly their answer is always to just change pills but I wondered if it is anxiety whether I could use some of my experience to help him a bit.

Thanks in advance for an replies.

I have had a couple MRI's and a DaT scan, nothing showed conclusively that my dopamine receptors are miss-firing, but the clinical tests are showing that I have early onset Parkinson's according to the Neurologist. He is starting me on Levodopa and says sometimes diagnosis can take a while and has scheduled a follow-up DaT scan. Has anyone else had a DaT scan do-over this close together, and is it remotely possible there would already be a notable change this soon? I think I know the answer already, just looking to hear of anyone that is on this journey. I am 58M here, tremor and clumsy in my right hand and right leg.

Any idea on how soon Levodopa starts working? Apologies if this post is rambling.

I have been told by the nurses managing my transition that moving from Oral to the pump is a 10-week process and can involve some serious OFF periods. I’m on day 2 and had worst OFF ever at the end of Day 1 that I had to take tablets to recover (total loss of energy, body wide tremors, cramping/seizing of legs, left foot curling). Nurse said that it’s part of the process and that I need to push through it. What experiences have other people had? Any tips? All help, suggestions appreciated.

Age 68(M). Diagnosed 26 years ago. DBS 11 years ago. 6 Sinemet Plus (100/25) per day plus 50mg Opicapone. Madopar dispersible for severe OFF times.

I recently stopped taking Amantadine and found that my voice is stronger and I am more articulate.

The Sinemet is both too much and too little. Gut motility is poor, so drug absorption is variable.

I am being assessed for Produodopa(Vyalev).

https://www.researchgate.net/figure/Motor-complications-in-PD-associated-with-levodopa-During-the-honeymoon-period-patients_fig1_323615454

Hey community! My dad’s super beat-up laptop has a ton of viruses and issues bc he uses the touch screen and accidentally hits all the problematic pop ups. It isn’t practical (for many reasons) for his set up to include an external keyboard. Does anyone have recs for a laptop OR add ons that a) isn’t Apple and b) can make things easier for people with Parky’s? We are limited on budget but I’m open to all ideas!

Decided to post here since this new change with my Mom. It’s been really tough on my family and I. I’m sure some of you can relate a lot. 2 years ago she came very close to the end during a hospital stay but surprisingly bounced back a bit and has since been requiring 24/7 care which my dad is the primary caregiver for her. It’s taken such a toll on everyone and the switch to hospice hasn’t provided any timeline for us but is more to make my Mom as comfortable as possible, which is my biggest wish for her. I believe she has continued to fight and push through this shitty disease for her kids (3 of us, I’m the oldest). We hadn’t been mentally ready for her to go but in the last couple years just don’t want her to suffer. I think she is more prepared to leave us now and has commented a little on it when her speech allows.

I’m finding that through all of this I have grown a bit numb to all the negative emotions and feelings I once had daily. Although this start to hospice has brought back all the heavy feelings again. I don’t want to regret anything so have been spending as much time as possible with my Mom/family. I hope that on the other side of this we can all push through and be there for one another. I’m just really scared for this transition. Any advice would be appreciated

Hi all, I wanted to share this playlist from a person I love, a musician with PD and a great man, listen to the marches they are fantastic. What do you think? https://youtube.com/playlist?list=PLiYTrBC\_8rdTpBXIKSZ4I0j2lwQXHCF4H&si=R1ipUfQbf7GYbCaJ

hello, sorry if this post is not where i should be posting but im 24F and my dad got diagnosed with parkinsons last year. i moved to a different country a few years ago which is where my mom lives and im just trying to make sense of it all. my moms health is also not well, theyre both pretty stubborn and quick to anger. right now hes taking Levodopa-carbidopa 3 times a day and it seems to be working, some days good some days bad but its hard to get much information out of him. recently he had an emergency surgery while on a trip (unrelated to his condition) and got a small infection after the surgery (which i was there for and took him back to the hospital) i flew out as soon as possible and i took care of him until we could fly back to where he lives together and flew back to japan when he was mostly back to normal. i tracked when he needs to take all his meds (theres a lot), spoke to his health insurance company, did everything he needed basically but it doesnt feel like enough. im so scared for both of them, im not sure what the right thing to do is. they both have bad health, and live alone in different countries. healthcare in america sucks and its hard to even get him an appointment not to mention that my mom and his family dont get along very well and im in the middle of it everytime. it causes me immense stress and emotional exhaustion and i dont know what to do. if anyone has any advice, please help me. im really not ready for them to die, i feel like im so young with not much "real life adult" knowledge and i dont know what to do.

My mom's prescription is for Sinemet 25/100, 2 pills 3 times a day. She has started having these really awful labored breathing spells and we can't figure out if it's from too much or too little Sinemet - she started taking her doses closer together (about 4 hours apart) to see if that would help, and also tries days where she just takes 1 pill, but spaced closer together. We obviously want to do med changes in consultation with her neurologist, but it takes over a month anytime she wants an appointment, and we're also getting her a referral for the closest MDS but their wait time is a shocking 6-9 months.

So I guess what I'm asking is, how comfortable should we feel to try different things with the dosage of her Sinemet while she waits to be seen by someone? Clearly something about her current prescription isn't working and she's so desperate for relief. Thank you.

I’m not the greatest at remembering things and wonder if anyone uses an app or anything to keep track of med timing and reminders for things? I downloaded Parkinson’s On, but I also worry about health data collection and privacy.

My husband gets lightheaded and his O2 sat drops to 80- 75ish every time he stands. Everyone keeps telling us how unusual this is. It’s not orthostatic hypotension (BP ok but HR 100). PT talked us into buying a very expensive pulse oximeter “ ring”, that sits above his knuckle on his thumb, to make sure we are getting a good reading (compared to fingertip). The advantage is that it pairs with a device so there is a history of when it happens. Now we know he doesn’t have sleep apnea. Pulmonologist and cardiologist both ruled out lungs and heart. He’s doing sitting and laying exercises but now he has to be in a wheelchair.

I won’t go so far as to say that ChatGPT has saved my life, but I won’t say that it hasn’t, either. I’m an 82 year old man with Parkinson’s Disease and several other serious medical conditions. The senior residence in which I live is currently experiencing a serious outbreak of Norovirus. Based at least partly on information I sought from ChatGPT, I decided to temporarily move out of the facility, and to isolate myself from my friends who remain there. For a person of my age and poor health to contract Norovirus could well have been life-threatening. Most likely, I wouldn’t have died, but it certainly would have been a terrible experience. I’ve also decided, based largely on information garnered from ChatGPT, to extend my absence from my senior residence, and not to resume contact with my friends there until the risk of my contracting Norovirus from that source is minimal. Except for the influence of ChatGPT, it’s highly likely that I would have resumed these contacts prematurely. That doesn’t mean I would have gotten Norovirus, and it certainly doesn’t mean I would have died from it — but you never know! I may still, despite my best efforts, come down with Norovirus, from that source or elsewhere — so far, so good! So thank you, ChatGPT, thank you!
(Note: I do realize that ChatGPT is only a software tool, and not a person. I may be old and superannuated, but I’m not stupid. Well, not that stupid anyway).

Hello all, I guess I'm finding it difficult understanding how I can help my father whom suffers from Parkinsons disease. Dad lived with me after finding out he has Parkinsons and I did everything I could to keep him at home, but as soon as he couldn't walk anymore I unfortunately had to move him into a nursing home. Its so difficult seeing this horrible disease take him slowly. So, fellow redditors. If by chance there are any tips or suggestions in how I can make him more comfortable etc would be incredible. I like to do his self care when I see him and massage his hands to try and lossen them up, haircuts and face and body washes etc. I must admit, this is one of the hardest things I have had to deal with and have neglected research into Parkinsons. I will change that. I will also read through the sub to gain knowledge and wisdom from all of you that have have been so kind as to post here for newbies to the sub like myself. So, again, if there is any advice at all please don't hesitate to comment. I would be deeply greatful. Thank you.

My husband used to be the cleanest man on earth. He would shower every day before work, wash his hair every day, brush his teeth, well, you get the picture.

Once he retired (age 55) he stopped the daily showering and everything... but here we are, MANY years later. He is now 80 and was diagnosed with PD 3 years ago. Something seems to have changed in his body chemistry after PD, because he has the worst body odor, especially arm pits. My grandpa out on the farm used to talk about "civit cats" and their smell. I have to admit that I have never smelled a "civit cat" but a skunk's smell isn't all that far off from hubby's armpits.

When I can get him in the shower, all he has to do is sit on a chair in the shower, and I do the rest for him... but we have to have a drag out fight for every shower. I don't understand. If I can get him in the shower once a week, I am doing great. I usually just give up because the fight that we have to have just isn't worth it. He has this continuous "greasy" smell, but those armpits are something else.

We have a walk in shower (I had the old shower pulled out and a new shower installed about a year ago. This shower has all sorts of built in grab bars so that all he has to do is walk into the shower and sit down. I shampoo his hair and rinse it off and wash his face and body. I wipe him down and help him in and out of the shower and dry him off. I put Vasoline on his arms and legs after the shower, so he doesn't get dry skin... I do everything I can to make his life easy, but it's a big fight to get him in the shower. Early in the day, he will say that YES, he would like a shower, etc... but when it's time, there's just one more television show he wants to watch... until then he's too tired for a shower. It's one excuse after another.

If anyone has any ideas on what to do, please feel free to tell me how to make a shower any easier on him. I even had the shower door taken off to give him more room to get into the shower. I stand in the place of the door, so I end up soaked in the process, but that's okay, because after his shower, I put him to bed and then I hop into the shower.

He does admit, after he's in bed, that he's glad that he had the shower, and that he feels so much better and cleaner (I always wash the bedding on his shower day, so he's getting a clean body into a clean bed) but many times, the fight just isn't worth it.

I have tried getting him into the shower right after he gets out of bed, in case he's just too tired in the afternoon, for a shower, but now he sleeps until 11 am, so he misses his breakfast and just gets up barely in time for lunch. I don't know if this late sleeping thing is another tactic so I won't ask if we can take a shower, or if it's his PD getting worse. I'm afraid it's probably the latter.

I am about ready to just get the things to clean his arms and legs and give up on the shower, but I don't know how to get his hair clean. I have tried the cap things that SAY they clean the hair (to replace getting his hair wet) but the ones I have tried really don't get rid of that greasy smell, and he still scratches his head like his head itches from the greasy scalp...

So my main question that I should have asked right up front: What do men use for deodorant? Hubby has a really BAD underarm smell (that he didn't have before PD) and that's even after coming right out of the shower.

Thank you for anything that can help that underarm smell. It's BAD. It seems to be worse some days, but never very good.

Yeah, 39 years old, in relatively good shape, kept myself active for as long as I can remember but PD got me by surprise last year, kinda ignoring the fact I always had a healthy life style.

The thing I fear the most is being alone in the future, specially when me and my SO are fighting. I feel like I would never find someone again if something goes wrong with my marriage and this kind makes all my decisions being based on that fact... which means even if I'm unhappy I kinda ignore that, because I think I'm not gonna find someone again... like I dont have enough time anymore...

Just venting over here, sorry about that...

How can we differentiate between peripheral neuropathy and parkinsons symptoms?

My husband has Parkinsons Dementia with severe Sundowning. He has been living in a Memory Care facility. I got a call last night that he was hitting the staff and they sent him to the local ER for evaluation. Now, they refuse to take him back. While at the first Memory Care facility, he fell, broke his hip. They refused to take him back. I live near Nashville TN. Is there a place that can handle Parkinsons Dementia with severe Sundowning with combativeness? I am SO FRUSTRATED!!!!

I've had a few tragic events happen lately and some so bad but still here I don't really have any emotions or anything like I said or nothing would have. But is that what they call apathy thank you very much reading it and you're kind helpful word. Sorry for the lack of punctuation.

I have Parkinsons, but don't know if this is related. When I get a good night's sleep, I have a very bad, lethargic day afterwards; am in a fog, can hardly walk, can't eat or drink, taste is terrible, other symptoms. When I am awake all night, I have a great day; feel good, have lots of energy, get much accomplished, am very active, eat and drink lots of fluid (no alcohol). Doctors cannot figure it out. It occurs as often as every other day, or I may have three or four good days in a row. What is going on?