Has anyone else experienced loss of Sens... - Cure Parkinson's

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Has anyone else experienced loss of Sense of Smell well in advance of other PD symptoms?

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ronn
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Yes, I definitely have. My mother -- who also has Parkinson's -- always said that she could not smell gas -- the kind like in the canisters or stove, not the other kind -- although I guess that would apply too LOL. And then I noticed it too, not being able to smell the way I used to. I never realized that it might be linked to PD until asked my sense of smell by two different doctors.

Just as an aside, my uncle, who lived in an apartment, was in the fire when the apartment building was burned down and he died of smoke inhalation because he couldn't smell the smoke. He was the only one who died in that fire. I'm wondering if he might have had PD when he didn't respond to the fire alarm.

ronn profile image
ronn in reply to

Thanx for your response. It seems that I lost my sense of smell about the time you were diagnosed, then had no more identifiable symptoms until a year ago. My father, though not the type to seek medical help, had many symptoms which we now see as probably PD. Maybe it is, to some extent, in our genes.

Yes. I was reading on this blog where it can be considered one of the first signs of PD.

My daughter kept smelling something. We finally picked up and moved furniture until under our sofa we found a dead RAT, the cat had brought in ?! I never smelled it!

Loss of smell also effects our taste for food. At times it can be difficult to eat because of not being able to taste the food. Texture seems to become more important.

ronn profile image
ronn in reply to

Thanks for your response. I'll check under my couch.

Paul_Dineen profile image
Paul_Dineen in reply to

DiCan,

I've had a weak sense of smell for as long as I can remember -- at least back to my teens. I'm 55 now. I was assuming it was genetic from my maternal grandmother having no sense of smell. The symptoms that ended up with me getting the PD Dx started about 7-8 years ago.

> Loss of smell also effects our taste for food.

You're right on (for me) about the appeal of food. I've never been food-focused, probably due at least in part to the sense of smell;.

> Texture seems to become more important.

And, I definitely have a general preference (meaning there are exceptions) for crunch over mushy.

About a1.5 years ago, I got a job after not having one for a while (the company I was at was hit hard by the mortgage/housing meltdown, and there was a big batch of lay-offs.) Anyway, since then (June 2010), I have been eating a lot less. I mean, really a lot. Typical workday: get up late (I'm a night owl), shower, get dressed, go to work without having breakfast, work thru lunch time without eating (rarely: a can of fruit during the day), go home and have just enough to not be too hungry to get to sleep. During that time, with no other changes (except for the stated two: getting a job and eating much less), I've gone from 255 pounds to 180.

Now, I know that this is not the best way to lose weight, and is certainly not a good idea for the long term. For one thing, I wanted to get down to the 180's, but don't want to get much lower because that can be dangerous if you get sick (eg, pneumonia). And, I know that the body generally wants go be given some fuel about every 3 hours (while you're awake). I'll be returning to more sane/recommended eating habits now. (But, I'll still have that weak sense of smell,)

in reply toPaul_Dineen

I have had days when I literally forgot to eat.

It hasn’t really help me to loose much weight.

I go through phases of not being able to eat then wanting to eat often. Never sure which phase I am in till I sit down to eat.

ronn profile image
ronn in reply to

DiCan, Just noticed my reply to your message regarding sense of smell. It sounded rather "smart-aleky", but wasn't meant to be. Just wierd "Parkie Humor" gone awry.

ronn

in reply toronn

I liked you comment. Humor is always a good thing.

Definately - had no sense of smell for several years.

ronn profile image
ronn in reply to

Many people seem to know that it happens. Nobody seems to know why. Do you have any theories or ideas about what made you a candidate for PD?

bawford profile image
bawford

I had allergies to Dust, Mold, Weeds, and Smokers in my 20s, That went away in early 30s. PD was diagnosed when I was 50. Slowly my sense of smell faded. It comes and goes now, not totally gone, just not always there. Many people I spoken to has experienced this lack of sense of smell. (Hello!! Are you listening researchers?? There has to be a link here also.)

Paul_Dineen profile image
Paul_Dineen in reply tobawford

Yes, researchers looking into understanding that is called for (never know where new understanding will lead).

More directly, one neurologist I saw bemoaned that people with low sense of smell aren't flagged as PD candidates much sooner. That would seem to put it on the GP's to catch that. Treatment could be done sooner; potential years of uncertainty could be reduced, ... other benefits i'm not thinking of?

ronn profile image
ronn in reply toPaul_Dineen

One of the possible benefits might be the ability to match up date of hearing loss with dates of "insult to the brain" such as head trauma and/or exposure to caustic chemicals, insecticides. In my case there is a pretty good match. It could also provide good evidence as to whether, in some cases, the disease may be hereditary.

Hikoi profile image
Hikoi

Yes i lost my sense of smell a number of years ago. It was a gradual loss. It was one of the questions the neurologist asked at my first consultation along with whether i smoked cigarettes.

Here is some research on it showing it is common, found in over 70% of PwP.

ncbi.nlm.nih.gov/m/pubmed/1...

Fraser profile image
Fraser

Yes, I lost the sense of smell several years before I was diagnosed with PD.

At the time I read somewhere the loss of smell was an indication that one would, in the future, have dementia.

sistadred profile image
sistadred

I lost my sense of smell at least 10 years b4 I got diagnosed. Completely changed my relationship with food

Court profile image
Court

I also have lost my sense of smell though not completely. I didn't realise this until asked if I could smell gas. I couldn't. This loss can be quite useful at times, especially if our dogs have found something particularly nasty to roll in but I missed the smell of turkey cooking this year. Unfortunataly, it hasn't affected my appetite and I still cannot lose weight. Though am not really a foodie.

maryedith profile image
maryedith

yes suffer from rhynites number of years prior to diagnoseses of pd

Nannylolo profile image
Nannylolo

Yes! It drives me crazy sometimes, because I cannot smell what I am cooking.

Some odors, like diesel, I can still smell. Usually I react to a chemical before I can smell it, like cleaning supplies will make me feel nauseated even though I smell no odor. It also has affected my taste to a degree.

jillfd profile image
jillfd

I have had a diminished sense of smell for as long as I can remember.

Still can smell somewhat and still love to cook and eat.

ronn profile image
ronn in reply tojillfd

Do you find, sometimes, that substances which used to smell good to you, smell less than pleasant as your ability to detect their odor diminishes?

shakenlady profile image
shakenlady

loss the sense of smell in 3rd phase.

ronn profile image
ronn in reply toshakenlady

Shaken lady It is unusual that your loss of hearing was so delayed. It alters some of my theories on the subject.

I read your most recent question and your bio. Wish I could give you something helpful, but lack the knowledge to match your 20 years experience. We should be asking you questions. I would like to hear (read} your story.

Ronn

daveyno9 profile image
daveyno9

i was diagnosed with pd 4yrs ago but i lost my senseof smell about 10 yrs ago

Markus profile image
Markus

I to have lost my sense of smell and taste.I have no appetite due to the meds.

Dennis profile image
Dennis

I have lost most of my sense of smell and taste. I have no appetite and have gone from 170 now down to 138 pounds... Caused by stress? PD? Lack of sleep PD? Most foods do not taste good or appealing to me at all.

JanellenGrimaldi profile image
JanellenGrimaldi in reply toDennis

I too have lost my sense of taste, but not smell. Eating is not as much fun now. :-(

LMcKinnis profile image
LMcKinnis

I have not experienced this, but have heard from many others that this is a very highly noticed symptom of PD. I hope this does not happen to me because I have always had an excellent sense of smell and would really miss it!

Koko profile image
Koko

Yes! This can be good or bad. I liked the sofa response!

Koko profile image
Koko

Yes! This can be good or bad. I liked the sofa response!

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