I am wondering if anyone out there has experienced anything similar. The tip of the wire moved from where it was supposed to be to his left corona radiata (only effect was not working to halt tremors on that side but otherwise his normal self at that point) and then - as he was sitting up to eat -it moved to the left superior frontal gyrus - and he had a seizure for a minute or two, become unconscious, had another seizure immediately thereafter and again did not regain consciousness. Emergency neurosurgery to remove wire without complication and no more seizures - normal CT and EEG - but could not wake up or move his body beyond squeezing our hands or barely wiggling toes -could swallow but delayed. The drs did not turn off the dbs in the emergency dept or once we were admitted and the other side of it is working properly and has not explanted. After this emergency surgery, he Could communicate with us with effort such that we know he is conscious and somewhat high level. For example, he said “I want my health back.” But developed blood clots, got a hospital-acquired infection and compressed lungs and not making much progress on being able to move or eat or fully wake up. Hospital team told us we should go to hospice to avoid his suffering and we agreed after being raked over the coals and he consented to not wanting interventions like intubation, feeding tube … He is 86. This is horrible and sad and just excruciating to live through for him and his family. I just want to try and see if anything like this has happened to anyone else.

After my initial diagnosis of PD, I immediately started exercising and it makes all the difference in the world. I used to be a gym rat for years and did 90-minute aerobics classes. While I am not able to do those types of classes anymore, I still exercise avidly but I do it with other PD sufferers by virtue of PowerForParkinsons.org. PFP (Power for Parkinson's) is a non-profit organization based in Austin, TX. They offer symptom-focused exercise classes live in the Austin, TX area and live video training on YouTube.com. You can check out their web site at: PowerForParkinsons.org. There is a huge video library available on YouTube as well. You can do these free exercise classes which are specifically designed to deal with the symptoms of PD. I invite you to check them out. I've been doing this since Oct 2019 and I can't say enough good about this organization. Remember, THIS IS FREE TO YOU.

Hi all. My grandmother (82) has Parkinson's and was diagnosed about 11 years ago. Within the past two years, shit has just gotten worse and worse. She was walking with a walker and had some mobility until she fell October 2022. Spent 3 months in a hospital, almost didn't make it because the hospital missed a UTI and she almost died of sepsis. Long story short, she's home. And now has a billion meds she's on, and literally nothing seems to work. My aunt is a narcissist and doesn't care how she feels, my aunt just needs to be in control and control the medical aspect. What this means: she won't allow anyone (not even my grandfather) access to my grams medical records, she won't take anyone's advice, and she just doesn't care. She physically lives 3 minutes down the road, but doesn't go over to help her own mother because she 'is busy'. She has no kids, no friends, no life aside from working from home, and literally doesn't do anything. It's a mess. Sorry for the rant back to the point - I've found a few meds that might help her. Here's what's going on:

Lately - she's been experiencing Parkinson's onset dementia/delusions. She sometimes sees and thinks people are in the house, accuses people of being "android robots spying on her privacy" and she will flip tf out and not take her pills. It isn't all the time, it's off and on. Mainly at night bc she cannot tell the difference between dreams and reality. They prescribed her Seroquel, which she isn't comfortable taking and neither are we honestly, and I think they're wrong and should've prescribed clozapine. It's proven in more studies to be more effective for delusions than the Seroquel, and less side effects/worsening of any motor symptoms etc. Question1: Does anyone have any experience with either clozapine or Seroquel?

She has been taking sinemet and MIRAPEX for years. Basically since she was first diagnosed, and it's just been raised and raised as it progressed. I read that mirapex can cause delusions because it is a dopamine agonist. Question2: is this true? Does anyone take mirapex or have a problem with it, or have suggestions as to what is better to take if it isn't the best?

As for the sinemet, I read that it is common to eventually build like a tolerance to it, or need something that lasts longer works fast etc. I read about a medication similar to sinemet, that starts with an R I believe? Basically she gets these spells, that she feels Shakey, and anxiety, weak, dizzy, and like there's a band around her stomach and elephant on her chest. She can't breathe, can't function and basically wishes she was dead. It breaks my heart. Question3: does anyone know what it's called, and any suggestions on it?

They've been to about 3 different PARKINSONS doctors so far BUT everything I've told them to say, suggest, etc doesn't get said because my piece of garbage aunt won't let them suggest ANYTHING from me. I could find a CURE and she wouldnt let her take it!!! She hates me so bad and it's putting a serious damper on my grams health! Ugh! Sorry for ranting and the long post. I'm just at a loss and hoping for help from ANYONE with the same experience or dealing with it.

My dad has Parkinson’s and we’ve found that he much more consistently has an easy time getting out of his chair/ getting up if he focuses on where he is going/ what he is about to do rather than the actions needed to get up. Is this something you’ve found to work for you? Anyone know the science behind why that might work?

As an aside, I’ve also noticed that it helps if I sit beside him and get up while he tries to—almost as if I give him momentum. It’s an intentional act on my part. Works even if he’s laying down. It’s rare that doesn’t work the first time—but I just do it again if needed (without bringing attention to what I’m doing, for what it’s worth). To be more clear, if he is in a rocking chair and trying to rock himself into standing up—I time my standing up with when he would naturally stand up. That tends to work the first time more often than not.

Hello, 37 male here.

I recently was diagnosed with SIBO, small intestinal bacteria overgrowth. This was diagnosed after a breathe test that tests for increased hydrogen in the breathe after drinking a sugary water solution.

My GI doctor prescribed 3x 550 mg of rifaxamin a day for 14 days to clear it out of my intestine. I was also taking Allicin, a garlic extract with the antibiotic. I decided I would take the course during my 2 week vacation in China with in-laws, that way I could eat whatever I wanted while traveling without fear of an IBS issue from the food.

Everything was great during vacation while on treatment, I felt great. I was eating whatever I wanted, somehow my libido was feeling extra good, and even my rosacea was clear and I had no flushing of the face which is common for me. During the tail end of my trip, I noticed I was feeling a soreness / weakness in my left pointer finger, and then a bit into my left hand. Much more noticeable while hand was at rest.

My first day back home in the states was Monday 4/29. This was also the last day on the antibiotics. Within 3 days I have suddenly started flushing from Rosacea very easily. I have major trouble sleeping. I will twitch or involuntarily swallow saliva after maybe 30 minutes of sleep and it will wake me up. I have major anxiety. My imagination while going to bed is gone. I used to imagine things to get myself to go to bed, now I have trouble with it and just sit there in darkness until I start to dose off. I am having some trouble typing this post. I feel very thirsty constantly, and drinking water causes me to urinate every 20 minutes. I feel cold but also sweaty. Having trouble getting distracted while multitasking.

Most of the symptoms came on today, Friday, after having several drinks with friends last night. I hadn't drank alcohol in over a month. The only symptom that started earlier was pain/soreness in the left pointer finger then eventually hand, which started at the tail end of my trip and antibiotic treatment. Eventually it went to my left forearm once back at home. My sleeping trouble started pretty much as soon as I finished the antibiotics.

Also, strangely, my rosacea is reacting very strongly to being back home, almost like I'm experiencing an allergic reaction when I'm sitting in my upstairs office. if I take a half hour walk outside my skin eventually calms down. I dont know if its dust of mold that I'm suddenly reacting to? didnt seem to have the issue in the past. I ordered some mold testing kits as there is none visible. My body feels very inflamed / stressed while I'm at home currently.

Both my grandfather and an uncle on my mother's side have Parkinson's. It didnt manifest for them until their 50s. They also heavily worked with pesticides during their life and blamed their PD on that. I am 37, have never been exposed to these pesticides that I'm aware of, and never previously expressed symptoms, that I noticed or connected to possible PD.

I am wanting to book an appointment with a neurologist, but it's now Friday when the syptoms started to hit strongly and the offices are not open until Monday for a booking call.

Any input is appreciated.

My dad who is 53 was recently diagnosed with Parkinson’s about a month ago. He’s active, takes care of himself, and is in pretty good spirits about the future. However we’ve reached a point where we need to have the “what do we do when you’re in late stages and can’t take of yourself” conversation? He is STUBBORN and won’t react well to the conversation but it needs to happen sooner rather than later based off of some complicated family dynamics and the fact I’m not around much (travel a lot for work right now). We’re not super close which doesn’t help either. Any advice on how to start planning for the future here?

Chronic polysystemic candidiasis as a possible contributor to onset of idiopathic Parkinson's disease

PDF Article Auto-Download

Candida Albicans: Characteristics & Byproducts

SAP= Breaks down Blood Brain Barrier

Biofilm = Mucosal infiltration + Gram Neg Bacteria platform

SUP35= Creates Alpha Synuclein

Ure2p= Triggers Tau transformation

Acetaldehyde= Alcohol = Cell death + Liver Failure -> Leaky gut + methionine collapse + Amyloidosis

Acetaldehyde + Dopamine = Salsolinol

Salsolinol = Toxin -> Cell death + Dopamine dysfunction

Hi,

Breaking down as I write this. I'm 32M taking care of my 62YO mother WP, in India. She was living independently till 1.5 years ago, when our world started falling apart. Within 1.5 years she has progressed to an advanced stage(maybe 4). It's likely that she has an atypical form of parkinsonism. She needs assistance with all ADL incl standing/walking, mostly remains on bed, slurred speech, swallowing/choking issues, severe anxiety/depression, constipation/bloating, severely underweight, disturbed sleep and the list goes on. It's painful to watch her decline. In moments of lucidity, she hugs me, cries and pleads me to save her. It makes me go numb. The past period has been tough for me too. To care for her, I've sacrificed good career opportunities, long term girlfriend left me, affected my health as well. Not to mention the heavy financial toll of it. Also, I work from home as a software engineer, and it's tough to work efficienctly when you're sleep deprived and anxious. I don't have siblings, or anybody close enough to actually support/help out. The only thing that is helping atm, is a paid part time carer. I think about Assisted Living options at times, when I feel burnt out. I'm posting this as a call for support/suggestions, in my current situation. Mainly wrt- 1.Tips to manage work efficiently in such a situation 2.Tips to manage finances better, since i handle everything 3.At this advanced stage, what are the treatment options(Can focused ultrasound/dbs help?) 4.Tips to manage care at home better 5.Should I start considering Assisted Living options for the near future Thanks in advance!

Recently my father had a bad diarrhoea due to acidity . During that period he couldn’t walk for 2 consecutive days. He was barely able to walk. He said his foot is dragging when he tried to walk. Do you guys feel the same ?

As I see it, the aim of C/L should be to enable you to reduce symptoms enough to exercise like a health conscious demon. Given that in early days symptoms may be sporadic, is an 'as and when' strategy of taking C/L a good idea or would one benefit from a steady background cumulative build up? Do neurons habituate to a given level of C/L and then not be arsed to produce their own ? As you can see I have no idea what I am talking about so any pointers welcome - esp mudfud and other MDS type people- sorry dont know how to summon him up.

Thanks

I'm new here, as my husband was just diagnosed at age 45 last month. Looking for in-person connection with other people balancing work and parenting along with YOPD. Are there any existing YOPD social groups in the NYC area?

I've been surprised at how my usual online avenues for in-person meetups about other niche topics have not yielded anyone local about this one. YOPD seems to be more niche than I anticipated. Thanks for any advice!

I can’t seem to remember the guys account handle. He seemed a gentle fellow, had a dog with him. He used to ask for letters too. Please mention if you’re aware.

Hi everyone, need some guidance in who my mom can possibly see for these 2 conditions she has with her Parkinson’s.

First, she’s always had lower back pain. It seems to be worst nowadays. Should she go see a spinal specialist? She is doing pt, received those shots for pain, and patches. It still hurts a lot. Anyone has cream or thing that helps?

Second, she recently started getting painful knots in her calves, they some what go away with massage, but comes back a couple days later. Who can she see for that? Anyone else getting this with your Parkinson’s?

Thank you all so much in advance!

Hello everyone. I was recently diagnosed and am experiencing mild symptoms, including slower speech and right-hand movements. I'm currently undergoing LSVT-certified speech therapy and occupational therapy, as well as attending boxing classes. These therapies require some of my time during work hours, and I'm contemplating whether to inform my employer. I would appreciate hearing your thoughts on this. Looking forward to your responses.

I have a stuttering problem and im starting to have head tics. I’ve had stuttering issues since i was 10, now im 17 im starting to have some head tics. My father has parkisons. Is it possible it may be a symptom of parkinson? If yes, should I wait until it gets more severe or get checked out immediately? Or perhaps, could it be just stress? Please let me know and thank you.

Hi everyone. I am a male with young onset Parkinson’s disease and I’m 44 years old. Manual shaving has become rather difficult. I started using an electric shaver, but it doesn’t get as close as I like. Does anyone recommend an electric shaver that does a great job? I got a Philips Norelco right now. Is there a better one out there?

Hi All. We have a parent currently in a reablement unit. As far as we know the prescription for Parkinson's medication hasn't been reviewed in a long time. We're concerned about progress and general condition. The ward doctor has vaguely said he'll try and get a appointment with a Parkinson's specialist to review meds, but it's slow going. Is there anything else we can do to speed this up?

Mom starts levodopa this week. What can we expect? Will her symptoms improve in a week? I’m a month?

I need some help.

When it comes to parkinsons I'm really clueless. I lost one of my grandmother's to Parkinsons in 2022. I have an uncle who has Parkinsons currently.

The problem is my uncle lives with my other grandmother who is 92. Recently has been having these "attacks" where his body won't calm down. This last one lasted for 3 days. During thus time he won't sleep and is pretty hostile. I have been researching as much as I can and I can't find anything to explain these episodes. Full disclosure he drinks. He says it quiets the tremors. My grandmother handle this much longer and I'm worried about her. When he goes through this she doesn't sleep either. She isn't eating and he is so agitated I am worried he may involuntarily injure her.

How do I help them with this? The reality is I am not really close with my family but I do love and care. I will step in and help in any way I possibly can. I just need to know where to start.

I'm now seeing a personal trainer twice a week, and it has been doing me wonders. Maybe I'll get ripped!

I'm also signing up for a PWP boxing class for twice a week. And I just found out that Beth Israel has a rock climbing class for PWP that meets every week. Why not? I put aside my pilates classes because it just didn't feel like a strong workout.

I between all of this, I get on the treadmill for at least a long fast walk. I'm picking up speed.

Am I overdoing it? I admit I am spurred by fear, but I am hoping this makes a difference.

I still have a tremor in my left hand. My left leg feels like it is ready anytime to burst into a silly walk, but it is holding off for now.

Has anybody been recommended to use a stationary bike to help PD? My partner’s family physician recommended this but he had hip replacements so I’m wondering if this would just aggravate the PD. He is in the pool every day doing exercises and I think this is better. His tremors are mild but he is in constant pain with neuropathy and all the lovely side effects of PD.

Does anyone take a muscle relaxant for when you feel very stiff?

Hello all, I have an evaluation for dbs with a physical therapist, speech therapist and occupational therapist on May 22. I'm hopeful ❤️

This seems amazing. I'm not a doctor or scientist, but as a person with yopd, things like this give me hope.

​

https://neurosciencenews.com/neurogenesis-parkinsons-genetics-26014/

my father was diagnosed with parkinsons at the age of 40, he is 48 right now. we are consulting the best movement disorder specialist neurologist, and i encourage him to exercise as well but i get these sudden jolts of saddness and anxiety thinking about it sometimes that how he is changing anf how things will turn out to be later in life. mostly i manage my emotions well and reason them out, but sometimes i feel so soooo bad and anxious. he is the person i am closest to, he is my father, my best friend, my everything. i cannot imagine anything without him. how to cope with this? or am I just weak so much that i feel bad about it? is it okay to feel bad and sometimes just cry ?