I'll be fine eventually. It's just different when most things are a challenge
Hi everyone!
My dad has Parkinson’s and had DBS surgery (two-stage in April). The device was turned on and programmed recently.
He had no balance issues before DBS activation/programming and was walking fairly steadily despite Parkinson’s symptoms.
Since DBS was started and adjusted, we’ve noticed:
Noticeably worse balance
Swaying / leaning while walking
More unsteady walking in the past few days
He sometimes seems less aware of his balance
My questions are:
Is it common to develop balance problems during DBS programming/adjustment?
Can DBS settings cause temporary worsening of balance or spatial awareness?
Could this be due to overstimulation or incorrect balance between sides?
These issues were not present before DBS
His last appointment was about a month ago and he seemed to be doing much better losing his balance here and there but for the past few days it’s been getting much worse.
Thank you all in advance.
I have moderate stage PD (13 years of symptoms , diagnosed 9 years ago, moderate stage for 1 year). This means I have on/off fluctuations. As I have it at a relatively early age, on/off episodes can be particularly intrusive when going out with my wife and 2 young girls.
For some reason co-careldopa which works well , takes over an hour to start working. Madopar dispersible takes 40 minutes and gives me a poor quality “on”. With a 3 year old , even 40 minutes seems like an eternity!
So I tried Inbrija. I wasted a few doses before I found a reliable way of getting it to work for me.
First I tried, sucking on the inhaler quickly. I heard a whirring sound and then uncontrollably coughed it all out in a big white cloud! Fail
Then I tried sucking slowly. There was still a faint whirring sound. I did not cough. But sometimes it was working and sometimes it did absolutely nothing. Fail again
In disappointment, I went through every fine detail of the instructions and videos again and realised I had missed one detail.
The instructions say to completely empty your lungs before sucking on the inhaler. This was the key for me. When you empty your lungs, your brain is totally focused on wanting the lungs filled with air again. So I sucked on the inhaler quickly and normally no longer cough. But if I do cough the reaction is so delayed that nothing comes back out.
When I say sucking on the inhaler, what I mean by that is I purse my lips around the inhaler as if I was going to drink from a straw and then breath in entirely from the mouth.
Now I am getting consistent results, starting to kick in as soon as 8 minutes, fully on by 15 minutes. For me it gives about 90 minutes of good coverage.
This has been a game changer for me.
Just thought I would post in case this is of value to others!
I was diagnosed with PD in February of this year following a mounting cascade of symptoms that I suspected early on were neurological in nature (olfactory disturbances [~10 years ago] → left shoulder pain [3 y.a.] → frozen shoulder [2.5 y.a.] → reduced arm swing [2 y.a] → occasional action tremor [1.75 y.a] → gait dysfunction [1.5 y.a.]).
The gait issues started as a limp and a weird stiff, achy feeling that would move around my lower body. Then came the hard-to-describe sense of my brain not communicating with my legs, like I had just borrowed this body and hadn't fully learned to use it. I started taking levodopa (as Madopar) in April of this year. Around that time I started experiencing a frequent and profound sense of weakness and heaviness in my legs, like you might get after a particularly intense leg day at the gym. Walking has become much more effortful, both physically and mentally. Naturally, I am concerned to see this level of dysfunction develop in a relatively short amount of time.
However, I have observed a few things that I think are interesting:
As a cognitive scientist, I find these observations fascinating for what they suggest may be happening in the brain. As a person with PD, I find them encouraging for letting me know that not everything I am experiencing is a clear sign of ineluctable decline.
[1] Alonso-Juarez, M., Fekete, R., & Baizabal-Carvallo, J. F. (2022). Objective and self-perceived lower limb weakness in Parkinson’s disease. Therapeutic advances in neurological disorders, 15, 17562864221136903
Hi folks, I'm coming to this lovely community to pick your brains (phrase feels a bit inappropriate in this context). I'm looking to start a vlog/ podcast about sex when living with Parkinson's and... Well that's it.
When I was diagnosed my sudden sense of mortality helped me understand it was pointless denying my bisexuallity. Discussing this with my PD nurse she arrived at the realisation that sex and intimacy should be something they discussed with patients! I was home before I realised that meant they weren't!
Are there any questions about sex and PD that you have?
Are there topics you'd like to know more about?
Is there anything you would not like to see in such a podcast or vlog?
I would also be interested in any relevant experiences you might have had. THIS IS ONLY TO READ HERE. Parkinson's is so different for all of us I would appreciate some insight into other people's experience.
We're not shonky fleshbags full of symptoms that need to be managed. We're real life people with needs and dreams and fantasies.
I’m 87 year old, diagnosed Jan 2024. For the past 6 months I’ve been experiencing day-long bouts of dizziness/lightheadedness, not vertigo. it’s especially bad in the a.m. hours, tapers off a bit in the afternoon. only thing that helps is marijuana: does not dissipate the dizziness but helps with mood. Neurologist says it might be a WRA, but says it could also be old age! In any case it’s pretty debilitatin, cant drive, makes exercise difficult. Anyone have similar issues? Thanks!
Speech therapist here.
Drooling in Parkinson's is one of the most misunderstood symptoms I see.
Most people assume the body is making too much saliva. It's not. Research shows saliva production in Parkinson's is the same or even reduced.
So why the drooling?
Think of a sink. The faucet is fine. The drain is the problem.
Your body clears saliva by swallowing automatically throughout the day. You don't think about it. It just happens.
In Parkinson's, that automatic swallow fires less often. Saliva pools. Then it spills.
The drooling isn't a production problem. It's a clearance problem.
That's why so many treatments miss. Medications and injections turn down the faucet. They don't fix the drain. And a dry mouth comes with its own problems.
Here's one thing you can do today.
Most people wipe first and move on. Reverse it. Every time you reach for the tissue, swallow first. Then wipe.
The wipe becomes your reminder. You're using a habit you already have to trigger the swallow that's not firing on its own.
One small change. Try it for a week and see what you notice.
I write more about Parkinson's speech and swallowing at everydayslp.org if you want to go deeper.
Every time I eat fast food, I feel great the next day.
My situation:
* Young-onset Parkinson’s
* 37 years old, diagnosed 4 years ago
* Non-smoker (former) and non-drinker (former)
* Organic whole-food diet, heavy on meat, fruits, and vegetables
* I “cheat” on food once in a while
* Going to the gym 3x/week for over 10 years
* Muay Thai/kickboxing 2–3x/week for over 10 years
* Sleep isn’t what it used to be, but it’s still okay
Now for the interesting part: I’ve noticed a pattern. When I “cheat” on my meals (although I don’t really consider it cheating, since my diet isn’t really a diet—it’s just how I naturally eat), I initially feel sick because my stomach isn’t used to fast food. I get bloating, nausea, and feel sluggish.
But the next day, I feel great—every single time.
My mood improves overall, I have less tremor, less stiffness, and I feel less sluggish.
What’s going on here? Is my brain just getting more energy from the increased sodium or saturated fats? That seems unlikely, since fat and sodium are already a big part of my diet (raw cheese, egg yolks, butter, salt, olive oil, etc.).
Or could it be a certain preservative that my body reacts to?
Has anyone else noticed this in themselves, or in a friend or family member with Parkinson’s?
I’m leaving this one up to the smarter people who might be able to explain why this happens.
Just curious about what exercises everyone has noticed beneficial for what symptoms ? I have found for example my when my right foot is hard to walk on without shoes I get metatarsal pain. So I simply start back doing a routine of squat jacks(10)x3 a 2-3 times a day which helps alleviate.
I grew up with a dog. I want a dog. My wife does not want a dog. So we’ve compromised since we got married and never had a dog. lol
I’m wondering about:
- is there enough evidence out there to support the benefits of a companion dog for people with PD?
(I’m totally not above playing the PD card to get me a dog. Judge me as you will lol)
Larry Grogin has learned that, prior to that breakfast, he needs to do a very long, slow warmup on the treadmill. “That’s something that’s not well understood in the Parkinson’s community,” he says. “With a normal body, you can warm up in a couple of minutes, but it’s hours for a Parkinson’s patient. Once you understand that, it’s a secret passcode.”
I'm a 52 year old guy who was diagnosed at 46 with symptoms since 40. After my diagnosis people I know and close friends were supportive and present. Over the years that has dramatically diminished. I miss my friends.
Everyone I know now treats me like I'm some fragile old man who isn't capable of taking care of himself. I'm still strong. I exercise and workout and could probably do more than some of those that treat me that way.
I'm sure you've all had similar issues.
If your looking for a friend, even just virtually, from free to drop a line.
After six months of waiting, it looks like I'm finally approved for the clinical trial for Prasinezumab. I'm hopeful and excited, and would love to talk to anyone who has taken this about their experience.
Does it seem to be working for you? Is it worth it? What side effects have you experienced?
TIA!
Hello all - I am hoping there are folks out there who can share improvements to how they're/their loved ones are managing their PD, or just quality of life in general, after moving to a retirement community of some kind. My mom was diagnosed about a year and a half ago and isn't doing great. She lives alone in a rural community about 20 minutes away from the bigger city. I'm an only child and unfortunately I live out of state. She has no friends locally to spend time with, and no hobbies. I wish this was an exaggeration - she doesn't watch TV, reads only occasionally and just about health stuff (not for fun), gets out for walks as she can but spends much of the day fatigued, and a couple of things she used to enjoy (like going out to dances) she doesn't feel good enough to do anymore. I know how important it is for PD to stay as active and engaged in both mind and body as you can, and I just think that's never going to happen for her as long as she continues her current living situation. The barriers of her fatigue, her distance from town, and her lack of community are just too great.
I really do feel that some kind of retirement community living could be so good for her - built in activities, a chance to meet people, somebody else to take care of food and cleaning, etc. My hope is that increasing her quality of life in all these areas could actually help with her PD and slowing the progression, and I would love to hear from other folks if you've found this to be the case (or if it's not been the case, it would be helpful to hear that too!). She has a pretty negative view of retirement communities in general and I think sort of views them as big companies trying to fleece you for all your money while you slowly fade away (grim, I know). I'm hoping sharing some stories from folks who have found this to be a positive change in their lives might help. I want to support her and her living independently if that's what she wants for as long as she can, but I also think it could be such a positive change in her life and would also help me feel less anxious about her being somewhere that could support her health needs more as progression continues. Thanks so much for any insight you're able to share.
I have had limited success with C/L when it comes to reducing tremors. For those in the same boat, what have you found to help? Any other medication or supplements? My mds has suggested artane but I am concerned about side effects that folks in this forum have mentioned.
Original post https://www.reddit.com/r/Parkinsons/s/rWEKpeFHQB
On June 1st I set a goal to workout every day in June for 🏳️🌈Pride month. As a gay man living with Parkinson’s disease, I wanted to challenge myself to put real effort into my own health. I needed a reason to show up. Pride month was that reason.
Today is day 30 and I finished my Pride month goal strong and learned some stuff about myself.
What I learned:
I can only push hard for 4-5 days before I need a lighter day for stretching and slower movements. My body has a rhythm and I can’t override it with willpower.
At 55 and about 6 years into this diagnosis I can still battle it. I can still build muscle and I can push some symptoms off.
My Parkinson’s symptoms improved enough to
Be noticeable to those immediately around me.
The dystonia I deal with frequently happens less often.
The Parkinson’s tremors have reduced bit.
The muscle stiffness that feels like rusted joints doesn’t feel so “rusty” as often.
The most important (for me) improvement is my walking gait and posture. I feel that sway again in my body as I walk. You know the one where your torso and shoulder sway opposite your hips and legs to balance you? Well that is one of the first things that Parkinson’s took away from me and now I’m feeling that back a little. Now I somewhat walk with my whole body again and it feels delightful.
Music Playing in the AirPods while exercising changes everything. Since my brain can’t always keep my muscles working in a good rhythm, music can sometimes, actually a lot of the time for me, pick up a lot of the slack and keeps the rhyth going.
Heavier music pushed me for more reps and heavier weight. (Metallica, Linkin Park), Faster dance beats gave me endurance for longer sessions. (Madonna, Donna Summer) but playing music that I loved,not just to hit a bpm, was better than anything. I think my brain recognizes the beat and just knows how to keep that beat from habit.
And it felt great to go to the NYC pride parade two days ago.
I know I can’t cure my Parkinson’s. But I can work hard to reduce its severity and give myself some extra years of mobility and movement. That’s what I wanted to do with these thirty days, to know that I can do it.
I hope you all have your own reason to show up, whatever that looks like for you. 🏳️🌈Pride month was mine.
Love you all
❤️🧡💛💚💙💜
🏳️🌈 #pride #prideinyourself
Any Tips to manage Rigidity in Parkinsons?
Hi all,
I (37,F) have recently been diagnosed with YOPD.
In the initial meeting with my specialist, was in shock as YOPD wasn't on the radar. So I didnt ask a lot of questions. In fact, I tried to get out of that room as soon as possible. so I could take a breath.
I am very lucky that i have been referred to a top specialist and am meeting with him next week - what questions should I ask? Is there anything you wish you asked earlier?
Thank you in advance
I just received a call from the disability determination service requesting a psychiatric and physical evaluation to be scheduled. Can anyone who has been through this process give me any insight on what to expect? Thank you in advance.
My mom has been experiencing labored/shallow breathing episodes for the past several months that seem to be related to the timing of her Sinemet (coming on usually 2-3 hours after her last dose). A week ago she had a horrible episode that seemed like a classic panic attack - hyperventilation, garbled speech, tingling extremities, confusion. It was awful and she went to the ER where they had to give her Valium and Haldol to calm down. They discharged her the next day after CT, chest x ray, heart workup, etc. Neurology came to visit and said they didn't think it was related to her Parkinson's. Nobody gave us any answers as to what they thought it might be but I got the impression everyone was writing it off as a panic attack. She had a similar event happen about 6 weeks ago (also ended up in the ER).
She is back home now and still having these breathing episodes 2-3 times a day, regularly 2-4 hours after her last dose of Sinemet. She got some hydroxyzine to take and it seems to eventually work to calm them down (along with taking more Sinemet) but these episodes are totally upending her life. She can't do anything. After doing some research I came across something called wearing off related anxiety where fluctuations in anxiety have been studied in PD folks as their medication wears off. Has anyone else dealt with this?
She has a neuro appointment on Monday but I'm afraid they're going to repeat they don't think it's PD related and send her away without any changes to meds. This is ruining her life and we are desperate to find some answers. She's waiting to get in to see a movement disorder specialist so unfortunately we are stuck with a regular neurologist until then. Thanks so much to anybody who can share ideas or experiences.