Loss of Sense of Smell and/or Constip... - Parkinson's Movement

Parkinson's Movement
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Loss of Sense of Smell and/or Constipation

jimcaster
jimcaster

Loss of sense of smell and chronic constipation are two of the most common early warning signs for Parkinson's disease. I'm curious about whether the most prominent early warning sign is also a predictor of the disease subtype. For example, I never had any constipation problems, but lost my sense of smell years ago. I have no resting tremor. I know of some folks who retained their sense of smell, but had chronic constipation and now are tremor dominant. Is there a link between the dominant early signs and the dominant disease expression years later? What do you think? I know this is purely anecdotal, but I'm curious...

52 Replies
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I'm tremor dominant with chronic constipation. No problem w/sense of smell.

jimcaster
jimcaster in reply to cirriped

Interesting! That fits with my purely anecdotal hypothesis. I wonder if it starts in the gut for some of us and through the nose for others and, if so, if that determines the nature of our symptoms and/or our response to various medications and supplements.

Grumpy77
Grumpy77 in reply to jimcaster

Tremor dominant here also with sense of smell intact. But here is the thing- up till now i'm not sure i know what constipation is- but over the past several months my poo has gotten consistently so big -it now literally blocks the toilet EVERY TIME. Every time I poo now i have to use a plunge pump to unblock the toilet

bbc680
bbc680 in reply to Grumpy77

No wonder you're Grumpy :-)

My husband lost his sense of smell years before being diagnosed , no constipation, no tremors!

jimcaster
jimcaster in reply to ruff1

This is really interesting to me. Loss of smell leads to non-tremor dominant? Constipation leads to tremor dominant??

Hidden
Hidden in reply to jimcaster

One of my PD friends is tremor dominant, has not had the constipation issue and has lost his sense of smell.

Art

jimcaster
jimcaster in reply to Hidden

There goes my theory...😊

Hidden
Hidden in reply to jimcaster

It's good that people think about these things though, because you never know what you might discover that might be useful!

Art

Constipation was part of my prodrome. I'm not tremor dominant.

Hi Jim

Please see this link

google.co.uk/amp/s/parkinso...

Kia

jimcaster
jimcaster in reply to Kia17

Thanks! That article was part of my inspiration for this post. I'm grossly over simplifying, but my main take away was that my relatively mild motor symptoms and relatively young age at diagnosis (55) may bode well for me, but I also wondered about whether loss of smell was also related to a more or less favorable prognosis.

Kia17
Kia17 in reply to jimcaster

I think type of symptoms (not their severity) solely depends on the location of α-synuclein clamps concentration on CNS and PNS and the type of symptoms not represnting the prognosis or progression of the PD.

Hidden
Hidden

Another PD friend has tremor dominant, constipation and no loss of smell.

Art

Despe
Despe in reply to Hidden

Hi Art! Long time no see, hahaha. :) My husband is tremor dominant, he has had no constipation, but lost sense of smell several years ago. He believed that loss of smell was due to a broken nose playing b-ball and subsequent surgeries he had. How little did we know. . . it was an early PD symptom. :( Anyway, thanks to Dr. C., his team, and B1 therapy protocol, he's found it (smell) again! It's not 100% yet but he is improving every day. I video'd his pull test just a few days ago, and he only took one step back!! Want to finish the video with reading and walking. I will then email it to Dr. C.

Hidden
Hidden in reply to Despe

Hi Despe,

I'm glad to hear that things have improved and his sense of smell is on the mend! It sure has been a long winding road, but it sounds like things are finally straitening out!

Art

I am also loss of sense of smell and no tremor. Mild constipation but probably same as general population.

Maybe this links with the Rhesus thing? We discovered around 50% of us here were Rhesus negative - general population only 10-15%. I’ve tried to interest various researchers but no interest - they seem to have their own very narrow field.

I’m rh+ what about you?

jimcaster
jimcaster in reply to Astra7

I dont know what I am regarding rhesus positive or negative. Something else to look into!

aspergerian
aspergerian in reply to Astra7

A potentially important observation !

Astra7
Astra7 in reply to aspergerian

Strangely the second time I did the survey there was no bias towards Rhesus negative, so I’ve had to abandon that theory!

aspergerian
aspergerian in reply to Astra7

Thank you for the pull back.

Non-tremor sub-type here. No early loss of smell or constipation although in the past few months constipation has set in and my sense of smell has gotten weaker in the past year or two. It is 11 years since my first symptoms. I may be an outlier as mine is hereditary.

Reduced smell (I miss smells!) not tremor dominant. Occasional constipation but nothing unusual.

Tremor dominant, smell totally intact, history of constipation...diagnosed a yr ago, initial symptoms 10-12 yrs ago.

Hi there. I’m non tremor dominant with minor loss of sense of smell , no constipation but I also paid attention to all that from diagnosis because was informed it could be a problem. Karen

My husband lost his sense of smell, is not tremor dominant, has constipation and very early on, had REM sleep disorder.

I appreciate your post, as it is important to bring things we notice out into this forum, and to our doctors, who hopefully listen and can make some connections as well. I am non-tremor type, with rigidity and gait issues. I noticed some strangeness in smelling different smells than others, (as someone else here remarked) about 7 years before my diagnosis in 2012. I didn't have notable constipation issues until after diagnosis - maybe 2 years after - but realize, looking back, that my stools were becoming bulkier from a longer transit time probably around the same time my sense of smell was becoming altered.

My hubby has loss of smell, not tremor dominant, no constipation

grandmama16
grandmama16 in reply to LAJ12345

My hubby has left hand and arm tremors but not as bad as at first since taking C/L. Sense of smell is affected. No constipation. Diagnosed 6 yrs or so. Is having trouble getting started walking, freezing. Also he runs hot while I run cold. Thermostat fights.

Hi jimcaster - my husband is tremor dominant,has mild constipation no loss of sense of smell.

I was diagnosed 20 months ago , have tremor in my right hand and I have just noticed, at Christmas, I am losing my sense of smell. My wife had bought me a bottle of cologne that I could not smell and we were playing a game where you have to guess the smell from scratchcards. I've never had constipation.

Diagnosed in May 2018, not obvious symptoms but loss of smell many months before. I recquired some sense of smell for about a month since I use Mannitol and Vinpocetine.

This is most interesting. I was diagnosed almost 7 years ago. Have never had issues with constipation (always attributed to eating tons of veggies). But I did notice loss of smell about 8 or so years prior to diagnosis. I probably realized this earlier than most people. I worked in real estate and would show properties, and people would comment on odors I couldn't detect. I figured losing your sense of smell was like losing your eyesight--part of the aging process. I just started commenting, matter-of-factly, that I didn't have a good sense of smell. I was 57 when I was diagnosed and am slow and stiff; no tremor.

Loss of ability to smell and constipation for years. No tremors.

While we are on the topic, I've noted a few times when a super elimination caused recession/cessation of 95 % of all PD symptoms for almost 24 hours. I find this very interesting, there is def a connection.

Kecher
Kecher in reply to KERRINGTON

What do you mean by "super elimination"?

jimcaster
jimcaster in reply to Kecher

I'll let Kerrington confirm, but I'm guessing it's a genteel way of saying " a lot of poop." 😊

Thanks for the replies everyone. I'm still very intrigued by the possibility that the dominant early warning sign may relate to the dominant post diagnosis symptom.

I did not have any constipation till I learned I had PD and got stressed our and I never lost the smell. Is just the tremor after two years. It is true B1 HCL helped a lot.

There certainly seems to be a trend with some outliers. Interesting and I wonder what it means. Worth investigating further I think.

My husband lost his smell but no tremor or constipation

Love to see a table with results collated🙂

I have had constipation forever although now under control mostly. I have tremors but my smell seems fine. I did, however, have a period of maybe six months or so when I kept smelling something not pleasant that no one else could smell . This was before my tremors showed up and it's gone now. Don't want to be too graphic but I think it is significant. If I am having trouble with a BM at all My tremor gets very bad. I definitely think the colon is involved.

This is obviously not scientific but if those of us who responded are representative of all PwP, loss of smell seems to lead to non tremor dominant PD and constipation seems to lead to tremor dominant PD. I wish this could be studied in more detail.

Lana666
Lana666 in reply to jimcaster

Sorry to break the pattern. I don’t have constipation on a regular basis, very seldom. My smell is only partially lost, which I did not feel until it was proved by a recent scratch test (-50% of wrong aromas guesses). But I smell almost all but not as fast as others and may fail when it’s very light order. Rigid-akinetic form, no tremor. Almost 7 years after diagnosis. 58 now, female

jimcaster
jimcaster in reply to Lana666

I don't think you break the pattern. More loss of smell than constipation, although maybe neither were your initial warning signs. Still, you have no tremors. Loss of smell and non tremor dominant versus constipation and tremor dominant.

Lana666
Lana666 in reply to jimcaster

Agree

Hikoi
Hikoi in reply to jimcaster

No sense of smell, no constipation pre diagnosis, tremor dominant

Loss of smell occurred first, 3-4 years ago. I am non-tremor dominant.

Lost sense of smell 25-30 years ago, diagnosed six months ago at age 61. Mainly tremors/quiet voice, some constipation.

If we had a computer we could each load data into an App by answering questions and the computer could look for relationships. Wait a minute.

just ran across this thread looking at old posts in health unlocked. There seems to be a amazing pattern here. Looking back pre - dx years. I developed a taste for extremes. Hot/spicy foods were the norm for me. I realize now ihat was simply because I couldn't taste it if it wasn't extreme. True to the example set in this thread I am not tremor dominate,

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