Parkinson's Movement

I can smell

Haven't had a sense of smell for years now. Then last week I started to smell things again first it was perfume the other I day took the lid off the jar of vicks chest rub and I could smell it. The only thing that I've done that's different is to start taking CoQ10. I'm on 4 x Madopar 125 a day.

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Thanks for sharing.

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Great! How much CoQ10 do you take, what brand & how long have you been taking it? Thanks!

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Hi I don't know if this is the reason why but it's the only change that I've made. It's 150 mg one tablet a day and I brought it at Priceline or supermarket in Australia. Brand is Biosource.

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There are some things pwp are still able to smell, and many that are no longer detected. Things like bananas (remember how they used to smell?) typically fall into the latter category. Also, can you smell coffee, peppermint and anise? According to a Dutch study:

"At least 90% of all Parkinson’s patients experience loss of their sense of smell, and many studies have verified this... This study found an easy and inexpensive test that can be used in a clinical setting to help diagnose PD accurately... Ultimately, the three odors that demonstrated the best sensitivity contrast between healthy controls and Parkinson’s were coffee, peppermint and anise... All the healthy controls were able to identify these odors and only 10 of 148 in the Parkinson’s group." Source: parkinsonhope.org/test-to-d...

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Just went and had a smell of the coffee container and it smells so strong couldn't believe it. Also the tube of toothpaste. Thank you for the link very interesting.

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I have the same experience! After years of no sense of smell and being diagnosed 12 months, I can smell, to some extent, again. I put it down to Mannitol, that I have taken for 3 months.

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Mannitol works for me too. I was only not smelling for about 2 months when I came across Mannitol (it also stopped my very slight tremor). Will take CoQ10 as well though. If I have a particularly healthy day (i.e. go for a run, doing low carb, high fat, with lots of brocolli/kale too then will cut down on the mannitol).

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Thats good you look like you are doing all the right things. I try to go for a walk but had foot surgery 18 mths ago and it's not given a very good result so have a bit of pain still. I put my iPod on and push through it as much as I can.

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How did u decide on ur mannitol dosage? Interesting...

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There is supposed to be a calculator if you sign up here:

clinicrowd.info/parkinsons/

It is basically dependent on your body weight. But I just take a heaped teaspoon in the morning, which is about right for my weight.

It does cause somewhat loose bowel movements, though different people try taking it in two doses to reduce this. If you are taking anything else for constipation then it might be better to stop. Basically you should be aiming for a one or two decent smoothish stools a day. An apple should help (you should eat the core as there is something else in there which I read helped too).

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Thanks very interesting

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what type os mannitol . liquid or powder?

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I've only been diagnosed for 12 months also but had been asking about a slight tremor over 4 years ago. Had been to 2 doctors and then my doctor was away and got a new one she picked it up straight away. Please can you tell me what Mannitol is?

Cheers

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Thanks very informative I'm going to talk to my pharmacists today and see if I can get it here.

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Mannitol helped me to. Also helpful for me is gluten free, sugar free and no diet soda

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Mannitol seems harmless yet helpful. What is ur source and dosing recommendation, please?@dreem

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I find my sense of smell comes and goes. I was diagnosed two years ago and am on azilect and inosine. I am wondering if it correlates with stress levels. Lower stress, better ability to detect odors.

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I don't think that is the problem with my smell I lost it years ago and but could smell the odd thing so was very surprised that it's starting to return.

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Curious, too...

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I've been diagnosed over 2 years and have no loss of smell at all. I do wonder if this is likely to go or whether this bullet at least is one I dodged? Did people typically lose this sense early?

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I lost mine about 10 years ago and only got diagnosed 12 months ago. Maybe you won't with a bit of luck.

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Can u taste Foods, fully, still? @wendyhalpin

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Yes I can taste my food but couldn't for a few years as I had problems getting wisdom teeth out and they put it down to nerve damage, but it slowly came back. Will be interesting to see if it changes now. It's only been a week since my smell stared to return. Hasn't stopped me eating and I haven't lost any weight ha ha

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My husband was diagnosed 5 years ago and still has no loss of smell. He is on Azilect and his Parkinsons is tremor dominant with little in the way of stiffness. I wonder if there is a connection with still being able to smell and Tremor being his main symptom.

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You might be right. Interesting.

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I'm not sure my Tremor is not to bad now that I'm on Madopar. I'm a bit stiff and have good days and some not so good. Feel strange being able to smell things and I've also noticed that my mouth tastes terrible in the mornings so maybe that's connected to the smell.

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periodically, i will smell things like something baking or other cooking odors. but, no one else smells it. and its always in the middle of the night.....maybe low dopamine levels???

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I am going with CoQ10 as a most likely contributor for my renewed sense of smell. However, Laglag wrote last year of the benefit from taking a daily drink of Emergen-C powdered vitamin supplement. I began doing that around the same time as my cardio started me on the ubiquinol form of CoQ10 2-3 times a day. I really don't know for sure that the both of those changes are or are not contributing to my renewed sense of smell. I'm just happy that I smell my food.

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That's good news will be interesting to see if it helps anyone else.

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I just failed the smell test at Dr office ( coffee and then a 🍋 lemon hand cream ) .Realizing this is a cardinal symptom- and taste will fail, next? When? Then you report a comeback: using Coq10!

Curious, Do others have similar experiences w Coq10? Or alternatively those that lose taste: how soon does it follow after the sense of smell is lost ( I understand individual variances, but for example please list a few) ?

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Hi I'm not sure if taking CoQ10 is the reason why my smell has come back but it's the only thing that I've done that's different. There maybe no connection. Also notice that my mouth tastes terrible in the morning when I wake up. So not sure about taste mine hadn't been to bad. My Dr didn't do a smell test I wish he had.

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So ur loss of taste wasn't directly related to loss Of smell? But they are both on return arrivals- Joy!

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wish I could say the same! I can taste liquids most of the time but rarely food. I miss the smell of salt air at the beach

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It's strange and my taste is getting better also, the only down side is I'd forgotten how bad some things smell. Haven't been to the beach yet.

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