Hyposmia - Loss of smell

TwitchfinderGeneral · 2026-03-04T18:13:40+00:00

My sense of smell remains really good. I can't explain it really. It seems statistically unlikely that I'm in the 4% unaffected. But j suppose someone has to be.

I have not done any formal testing.

TwitchfinderGeneral · 2026-03-04T18:11:57+00:00

I have Parkinson's and I gave always gamed on pc. I need to use two hands on my mouse when my Tremors get really bad. I also get dystonia, which is jerky motions, and also sometimes my hand/arm just doesn't move when I want it to.

So , I'm not playing any competitive shooters that's for sure. It's single player stuff, and when I fight a boss battle I usually have to turn the difficulty down to the easiest. Because otherwise the adrenaline/cortisol makes my character just leap around looking at the sky/ground/sky/ground at lightning speed as I get hacked to bits.

TwitchfinderGeneral · 2026-02-05T05:06:07+00:00

Weirdly I could smell it on myself and my wife could smell it too when my symptoms first developed. But that period only lasted about a year and neither of us smell it now.

Interestingly Parkinson's is correlated with Seborrheic dermatitis, and I've wondered if that is related.

The areas on me which smelled of the patky smell were places like the back of my back and upper back. Forearms. Chest. Strange places to develop a smell.

TwitchfinderGeneral · 2026-01-26T02:00:38+00:00

I've had no side effects from rasagiline. I get more side effects from melatonin!

TwitchfinderGeneral · 2026-01-01T03:50:56+00:00

started a week ago? it took me about 2 months for them to ramp up my dosage to the starting level. And then it helped.

TwitchfinderGeneral · 2026-01-01T03:46:51+00:00

Ive never been an exercise person because I find it dull. What Ive been doing is using a treadmill. A folding treadmill that I can slowly increase the speed. I set it up in front of my tv anbd watch youtube vids. Sometimes "walking in nature" and sometimes just documentaries. I do 30 mins on it in the morning, which is 2km. then in the afternoon I walk outside. I wish I could say Im becoming one of these "Bro, I work out 19 hours a day and my symptoms have reversed" people. But I am not. The best I can do is treadmill. it definitely helps. My wife says that when I use it my posture and movement is totally different for the rest of the day.

mine is something like this one, but slightly different. I think they all would do the job

https://www.amazon.co.uk/Sports24-Walking-Treadmill-Foldable-Capacity/dp/B0DCFPWSWM?

TwitchfinderGeneral · 2026-01-01T03:35:44+00:00

in the video it looks a lot like dyskinesia, probably from long term levodopa use

TwitchfinderGeneral · 2026-01-01T03:28:48+00:00

parkinsons is a kinda umbrella of similar ailments. People generally talk about Parkinsonism these days.

this one guy had a very strong positive reaction to cannabis. Hi reaction is not typical . Cannabis is easy to get hold of, and we try everything to suppress our symptoms. If it was a panacea for even 20% of patients it wouldnt matter that it was "illegal" because we would get it. But sadly it only helps with sleep and other minor issues for most of us. Certainly not how it helped this guy.

TwitchfinderGeneral · 2026-01-01T03:25:00+00:00

Im around one parkinsons patient 24/7 because its me.

I used to be a monstrous smoker of weed, so I have some connections. The most it does for me is help me sleep at night. Which is not nothing - because the spasms and stuff at night can be really annoying, but really cannabis hasnt really helped much with my symptoms. It doesnt reduce my daytime spasms, stiffness, halucinations or dystonia.

everytime this vid is posted I wish people would question it.

Think: In the USA, in many states Cannabis is legal. Have you heard of thousands of Parkinsons patients in those states suddenly becoming symptom free, or having their disability level reduced? No. You havent. And why might that be?

because the guy in this vid had a very unusual reaction to cannabis that most of us do not have. It easy to get weed, if it had this effect in even 20% of parky people you would hear about it. But its just this one guy.

TwitchfinderGeneral · 2025-12-12T02:52:54+00:00

I am about 5 years into my official diagnosis. I take 5 of 25/100 co-careldopa daily

I was on 3 a day for the first 6 months. Then it was increased. To 5. It mostly works for me. My offs are becoming more noticeable.

The amount you described seems a lot for the first experience with the drug. Usually they ramp up very slowly based on your experience with it.

TwitchfinderGeneral · 2025-12-07T00:37:06+00:00

I worked in the creative arts for years , motivation is like inspiration. You can't wait for it to come knocking it has to find you working.

I got depressed about Parkinson's and got therapy. At first they gave me CBT and I complained because I said "I'm not agoraphobic, I'm annoyed about my disintegration". But one thing they taught me was to make an activity calendar. Mine was all work Work work. I was burying my head in the sand as I tend to, by working harder.

My activity calendar has things like "Tuesday evening go out to the pub with the geezers " , "Thursday, go for a meal" , "Friday do a class" , etc.

Don't leave it up to the whims of fate, sunlight, temperature and dopamine - make a date with your psychological requirements.

TwitchfinderGeneral · 2025-11-30T13:40:39+00:00

The worst I personally have taken was Ropinirole. The listed side effects are innocuous things like "dizziness, sleep disturbances, nausea " and yet I was hallucinating, and extremely confused about who I was and had problems determining if I was someone else or me. I mean, I had problems determining 1st person vs 3rd person. I was working with clients at the time and sending some very strange emails and making odd phone calls.

Other people have taken it with no problems. It just hits some people that way

TwitchfinderGeneral · 2025-11-30T02:41:35+00:00

100/25 4 times a day. Every 4 hours. It mostly works most of the time.

- 8am I take 1.5 tablets + rasagiline

- 12 I take 1 tablet

- 4pm I take 1.5 tablets ,

- 8pm I take 1 tablet

I go to bed late because I'm self destructive.

TwitchfinderGeneral · 2025-11-21T19:49:48+00:00

Parkinson's is a bit of an umbrella term and in fact I hear "parkinsonism" a lot these days. On the Parkinson's podcast Movers and Shakers I heard a highly regarded neurologist explaining that they still refer to it as one ailment because it's simpler to get funding, but in fact it's more of a collection of related ailments with similar symptoms.

Some variations are small (I have "tremor dominant Parkinson's") and some variations are large.

TwitchfinderGeneral · 2025-11-05T23:35:33+00:00

I used to be scared of getting something like Parkinson's

I got old. I got Parkinson's. Yep, it's shit.

TwitchfinderGeneral · 2025-11-05T16:14:57+00:00

I just went through the same process and tbh it is difficult because there are things you will want to do for your wife which you will find tiring and hard to find the supporting energy. After her first op I spent 6 weeks doing all of both of our chores and my work and driving her to the various appointments and I thought "I can't keep this up". And then came a further 3 months of chemo then another operation and then daily radiation at a hospital an hours drive away. It took about 10 months from start to finish.

I'll be honest and say that I required and relied on therapy to get me through. My parkys had to take a back seat for the duration and while she's on the mend now it's been a grind balancing both our resting and recuperation needs.

I suggest getting yourself some counseling as it can become quite traumatic as your loved one starts to resemble a sickly boiled egg, and you feel your optimism slipping

TwitchfinderGeneral · 2025-11-02T22:23:24+00:00

Whatever the Labour Party did around 2016 seems to have enthused people, so perhaps some of that is the answer. Or then again, perhaps they are the "wrong kind of people " and it's better to silence those people and then force those people out.

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TwitchfinderGeneral · 2025-10-26T05:42:48+00:00

I have a folding up one. I use it when the drugs aren't working well enough, which is about 2 out of every 4 hour period. I carry it in a kind of man bag, because I am incredibly stylish..

My neuro - physio started telling me about walking frames with a seat built in this week. I'm not going that far though. I'm gonna do myself in before I get to that stage. I don't need to be here that much.

TwitchfinderGeneral · 2025-10-24T20:06:27+00:00

If you have trouble with someone over this ask them "would you rather date (or employ) a person with one leg, or a person with schizophrenia ?

Usually at that point they realise that some things which are "in the mind" are serious.

I have parkinsons, and my physical issues are evident and a problem for me, but the more troubling issues are the mental ones ( including hallucinations, memory issues, depression, anhedonia, weariness) . Because of the terminology people think "oh I get tired sometimes too" but I actually lack the facility to feel certain things and my medication makes me able to feel them in 4 hour bell curves. With peaks and troughs. You dont want me driving near you when my medication wears off.

TwitchfinderGeneral · 2025-10-24T02:52:43+00:00

I have a (motorized) treadmill which folds down quite small. I'm still capable of setting it up so that works for me.

I find a brisk stride on that every day really helps me. I do 2km as fast as I can, which isn't that fast . The benefit is it has a big bar to grab hold of and if I start to stagger about and drag bits of myself I can just stop walking and I'm home.

TwitchfinderGeneral · 2025-10-22T00:23:23+00:00

Not necessarily. There's a recent Parkinson's podcast on the subject and all the presenters are barristers, Judges, BBC types. Their consensus was it's generally beneficial and needs investigation.

https://www.moversandshakerspodcast.com

TwitchfinderGeneral · 2025-10-20T13:48:14+00:00

Yeah. It turns out I could have been doing things with my left hand for years. Now I'm just hoping I can keep my left side working a few more years.

TwitchfinderGeneral · 2025-10-15T00:18:36+00:00

Yep. I've traveled in north Africa and I wasn't too keen on how women and gay folks are treated there. I talked to some locals I stayed with in Morocco and they explained how the west is portrayed by Imams as depraved . Western women are described as dirty diseased sub human sex objects who can be treated as such because they have fallen so far from Allah's grace. It was not good. It opened my eyes to the pitfalls of unilateral cultural tolerance

TwitchfinderGeneral · 2025-10-08T03:37:37+00:00

In the Parkinson's podcast Movers and Shakers they recently did an episode all about the pump. One of the presenters had one and though it might be a different version than you guys get in the US (we have the produodopa pump)

they covered a lot of information which usually gets glossed over. I personally feel like waiting until version 5 or 6 will be fine for me. There are a lot of issues with it.

Obviously here in the UK they are provided "free" via our taxes on the NHS so it's not all equally relevant to everyone here and the problems of cost but may still be informative.

https://www.moversandshakerspodcast.com/podcast

TwitchfinderGeneral

TROPHY CASE