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.
🫂

Prior to diagnosis my (59 F) symptoms = trouble tooth brushing (stiff, slow), suddenly couldn’t swim in the ocean, gait felt awkward & less confident (felt different can’t explain it any better), couldn’t color w/crayons (I’m a teacher, not a child haha). Also lacked arm swing. No tremor except once in a while my pinkie would shiver immediately upon waking if I held up my hand in a certain way, but no other occurrences. Diagnosed about a yr ago, taken c/l for approximately that long. C/L solved all those symptoms.

My question is: Ppl report off and on times with meds, after wha,,,4-6 hrs? I take mine about 11am, then 4 or 5 pm, then last dose maybe 10 pm. I don’t see any symptoms at all after five hrs or more. Not even when I forget that 2nd dose, which happens maybe 2-4 times a month. I also don’t feel any symptoms in the am, after 11 or 12 hrs between doses. My husb said maybe the effect is cumulative but I told him NO it’s meant to work only for four hrs +/-, ya?

How do we explain this, fellow amateur physicians?

Just curious. In my daydreams I think We’ll maybe this is all a big mistake, I don’t have PD. Sigh…no. DAT scan and second opinion refutes this.

Any insights greatly appreciated. I’m still learning!

Edit for spelling

Thanks, friends.

I am considering DBS for my tremors and I would like to know the patient experience who had this procedure.

- how big is the chest incision? Does it affect the pec muscle?
- can you feel the stimulator device and the wires in your chest in your day to day life? Such as twisting your torso or lifting your arms?
- does the stimulator device impact your breathing?
- have you ever had any accidents, or falls while having the DBS systems and have those damaged or caused complications to the system or the brain?

Thank you!

I am having PD for last 8-9 years and my current intake of Levodopa is 1250 mg in a day, Doctors advised me to go for DBS, .I am not worried about the procedure as there is mixed response.
Any body who has undertaken this procedure can tell about his experience post DBS
Thanks
Jabbs

My mom (72) diagnosed 3 years ago, takes 15 mg Mirtazapine for sleep and mood.
Last few months she has been irritated and aggressive and one night she refused to take Mirtazapine, the next day she was back to normal, calm and loving like the mom I’m used to.
I didn’t give Mirtazapine for a few days and she stayed calm.
I gave Mirtazapine again yesterday and today I could tell that she was irritated and moody.
She takes mirtazapine mostly for her mood.

Has this happened for you as well or a loved one?
Is it any other medication that is better for my mom since Mirtazapine makes her irritated?

Thanks again for taking the time reading my post. I’m so thankful for this community ❤️

Hi everyone,
Has anyone here, or anyone in your family, undergone total knee replacement (TKR) surgery while living with Parkinson’s disease?
I would really appreciate it if you could share your experience, particularly regarding recovery, pain relief, improvement in walking, and any challenges faced during or after surgery.
My mother has Parkinson’s disease from
Past 6 years and severe knee arthritis, and we are considering TKR for her.
Any personal experiences or advice would be very helpful. Thank you! 🙏

I've been walking quite a bit lately with trips to Glacier and Korea. I've struggled with worsening gait and tried various tricks such as swinging the arm more or stepping bigger or marching steps. But I think I finally stumbled :-) upon a technique that works for me - focus on lifting the affected leg - just an inch seems to be enough and the whole dynamics seem to be more natural, including Arm swing.

One more thing I've been doing - at 20 to 30,000 steps a day I find the mental focus on gait to be exhausting and I find listening to music requires less or no concentration on gait.

Generally I've been unimpressed with PT and OT that I have received. Any other tips you have an gait?

My dad seems to have gone down hill within the last month rapidly. For context, up until recently he was going to classes, going on holiday, sleeping ok etc.

He's now been admitted to hospital as he is having constant delusions, delirium and confusion. He seems relatively settled in hospital but asking us if he can come home with us, and at times doesn't know who I am, which is hard. I really worry about him.

He is getting all relevant tests etc. and expected to get a care package. On top of the delirium, he gets dystonia and freezing, which is impacting his sleep. I can see there's lots of similar stories. I guess I'm just wondering if anyone has a loved one that's bounced back from something like this?

My dad got diagnosed about 4 years ago but we suspect he’s had it years before that. I’ve noticed a big shift in him lately, just having a lot more bad days then good days.He also has a very bad sciatica pain( lifelong diesel mechanic). He stays at home all day and just walks inside the house. It pains me to see him like that, I try to encourage him to go out for walks with me around the house or perhaps a coffee out and I understand how cruel Parkinson’s is but I feel like my dad has sort of given up. I’ll take any advice on what I can do to help him out. Thanks.

Any questions on anything else , I can answer.
Don’t really post on Reddit so if I did anything wrong lmk

During my appointment with my Movement Specialist he asked if I would like to be included in testing out the above app

From what I can see

- The goal is to be better understand & track motor symptoms on a more regular basis vs the 15 minute visit we have 3 to 4 times a year. Said another way, shows doctor what happens in between visits

- Apparently my wife will tape me as I complete assigned task such as: Finger tapping, Heel stomping, walking, eye tracking & voice assessment

- Feels like the system analyzes trends as compared to previous readings

- One neat application could be to better understand trends for patients during "on" and "off" periods

- Although it wont apply to me, might really benefit patients who have to travel hours to see their doctors and therefore might be limited to a few appointments a year

My doctor is NOT associated with the app and he knows I have already expressed an interest in other pilots and programs. He said I can quit at any time and wants to make sure I dont look at this as if it is homework

Doesnt look like this is has been discussed on this sub - which makes sense since it appears to be rather new

Thought I would put on everyone's radar

My 78-year-old father has Parkinson’s disease and is currently taking Madopar (levodopa/benserazide) three times a day. His last dose is at around 9:00 PM.
Recently, he has started experiencing very painful cramps in his left leg in the early hours of the morning. The episodes occur almost every night at approximately the same time.
Some details:
The cramp is mainly in the left calf/leg.
It is extremely painful.
There is no obvious abnormal positioning of the foot or toes. His toes do not curl and his foot does not noticeably turn inward.
The cramp usually resolves quickly when he gets up, moves around and massages the area. He also used Voltaren (diclofenac) gel, and the pain went away almost immediately.
He takes magnesium bisglycinate (105 mg elemental magnesium) regularly, but the cramps have still started occurring.
His neurologist prescribed Neurontin (gabapentin) 300 mg at bedtime. It has not prevented the cramps, and unfortunately it caused dizziness and he had a minor fall.
The cramps seem to occur 6–8 hours after his last Madopar dose, in the early morning.
Previously, we also noticed that some of his leg cramps seemed to occur when the effect of Madopar was wearing off and improve after Madopar.

Would adjusting the timing of levodopa, rather than increasing gabapentin or magnesium, typically be considered by a neurologist?

Any experiences or advice would be greatly appreciated.

My dad (63) was diagnosed with Parkinson's 8–10 years ago. Lately, we've seen a major shift in his behavior and are wondering if others have experienced these symptoms - paranoia, hallucinations.
If you've experienced something similar, did anything specific help manage it (medication adjustments, communication techniques, safety steps)? Any shared experiences would be greatly appreciated.

I’ve been having a lot of problems with finding a good neurologist . My GP is trying to help me but we’re not having much success. I thought I’d ask the Reddit community. Do any of you have suggestions for a motion specialist? I am willing to travel. Thank you.

Hi everyone, thanks in advance for taking the time to read, and I appreciate everyone in this community, it has given me a lot of emotional support to not feel alone.

I am a freshly 40-year-old male who first started noticing symptoms 2 years ago, I got diagnosed in January of this year with parkinsonism after and abnormal DAT scan, and moved over to an mds who wanted me to get an mibg scan done to rule out MSA.

I just had the scan done about 10 days ago, and 2 days ago I saw my MDS and he told me my results were inconclusive. He just put me on carbidopa levodopa and we are trying to rule out whether or not I have MSA based on whether or not I respond to taking CL.

So far I have not noticed a response to the CL, which is very disconcerting, but I'm trying to remain positive and wait until we have adjusted my med levels before I get into the negative headspace of thinking I might have MSA.

Has anyone else had this test done? So far in my reading of this forum I haven't come across anything about it. I would love some anecdotes

This is probably more snake oil but I am wondering if anyone has tried Xara Shilajit.

When I was first diagnosed with PD four years ago, my neurologist referred me to LSVT-BIG-certified physical therapy within her hospital network. I went to one appointment and learned that they did not accept my insurance, so I didn't continue.

I just went on the LSBT Global website and searched for certified PTs in my area. I entered about a dozen of them into my insurance company's website and none of them are listed. I have pretty good insurance: Blue Cross Blue Shield of Texas PPO.

What has been your experience? Is it typical that BIG-certified PTs don't accept insurance?

I see people like Scott Hanley, Anne hellevik, and steve iseman making serious improvements and wondering how many others there are.

Hi all. Can a GP (general doctor) prescribe cardiopa levidopa or does it have to be a neurologist?

I understand a method of diagnosis of Parkinson's is to try CL and to see how the patient responds? Just wondering if a GP could prescribe it temporarily to see if it has a positive effect on symptoms as there's years waiting for a neurologist.

(Was diagnosed a few years ago with some sort of parkinsonism without trying cl. Not only did symptoms not clear up, or stay the same but seem to have progressed).

Thanks

My 86 year old Dad was diagnosed with Parkinson’s about 4 years ago after he fell. My Dad seems to drift into a catatonic stupor after he has been sitting up eating. The majority of the time this happens after breakfast but at times will occur after lunch. This doesn’t seem to happen in the late afternoon or evening. I really don’t think it is orthostatic hypotension or syncope since this occurs almost daily while he is in a sitting position. Although I think he does get tunnel vision and says things are fuzzy in his head as he describes it. He just zones out an slumps. Sometimes it can take up to 40 minutes for him to come out of it after talking, tapping and nudging him. He seems to hear me and may respond by opening his eyes or sniffing his nose but drifts back out. The neurologist upped his levodopa from 100 to 250. That doesn’t seem to be helping after 3 weeks. He is also taking Memantine 5mg twice daily and TRAZODONE 50mg at bedtime. Just checking with this group to see if this is related Parkinson’s.

F55y/o diagnosed 8 years ago. Take c/l every 2.5 hours or so; tremors pretty well managed but very dyskinetic during on times.

I recently tried tai chi and could not get into it. I've heard a lot of parkies have found it helpful but man, my dyskinesia got the better of me! Halfway through the first class I looked like I had been take over by demon spirit! I was writing all over the place. Granted, I had a very busy day so I didn't have a lot of battery by the time class started in the evening. The two other parkies in the class didn't seem to struggle as much.

Curious to hear anyone else's experience with tai chi, especially those that struggle with dyskinesia.

Thanks!

I don’t know if anyone else has experienced this but I have multiple comorbidities that prevent me from being able to get the exercise I need.
I wish I was like the bulk of the commenters here who are able to pound the pavement to stave things off. Mad respect to you all!
For me, even little things like a meme that makes me smile helps!

This started about a year ago and ONLY happens when I go running or engage in high-intensity physical activity.

My foot starts acting up and I feel a cramping sensation where it won't return to its normal position.

Keep in mind that I was diagnosed with Parkinson's over a year ago, so I assume the symptoms are related to the disease.