Study to Test if Fading Sense of Smell Signals Onset of Parkinson's

[Stitcher]

Study to Test if Fading Sense of Smell Signals Onset of Parkinson's

January 20th, 2009 in Medicine & Health / Diseases
http://www.physorg.com/news151689638.html

(PhysOrg.com) -- Many individuals with Parkinson’s disease are able to recall losing their sense of smell well before the onset of more commonly recognized symptoms such as tremors, impaired dexterity, speech problems, memory loss and decreased cognitive ability. To determine if a fading sense of smell may signal Parkinson’s, researchers at Northwestern Memorial Hospital and Northwestern University’s Feinberg School of Medicine are participating in a national study to examine the correlation and ascertain whether smell loss presents a tool for early detection of the disease and an opportunity to delay or ultimately prevent more troublesome symptoms.

Nearly one million people in the United States are affected by Parkinson’s disease, which stems from premature aging of dopamine-producing cells in the brain, and the number is likely to grow as the population ages. By the time Parkinson’s disease is detected, most individuals have already experienced a 60 to 70 percent loss of dopamine-producing cells in the brain.
“Very little is known about the early stages of this disease,” says Tanya Simuni, M.D., director of Northwestern’s Parkinson’s Disease and Movement Disorders Center and associate professor of neurology at the Feinberg School. “By utilizing smell testing in conjunction with other tests, we hope to develop a system that identifies the presence of Parkinson’s before it develops into problematic symptoms.”

Northwestern is one of 15 sites nationwide and the only center in Illinois to participate in the Parkinson’s Associated Risk Study (PARS), the largest long-term study in the United States of relatives of individuals with Parkinson’s disease. Evaluating 7,500 relatives for three to five years, the study draws from research demonstrating that first-degree family members such as mothers, fathers, siblings or children have a slight increase in their risk to develop the disease. As age has been recognized as the single proven risk factor for the onset of Parkinson’s symptoms, the study will monitor relatives 50 years or older.

PARS study participants will be sent a scratch-and-sniff test accompanied by a brief questionnaire to be completed at home, with possible follow-up through continued questionnaires or evaluation by a local neurologist. Participants may also be contacted for more extensive testing.

“This study presents an enormous opportunity to not only better understand the initial stages of Parkinson’s, but also help future generations,” says Simuni. “In the future, early detection combined with neuroprotective therapy may pave the way for interventions that slow the progression or even prevent the onset of Parkinson’s disease.”
Provided by Northwestern University

[paula_w]

Thanks Carolyn,

I guess they still need data about sense of smell, but smoking also reduces the ability to smell. After having pd for many years, I still can smell things like cleaning liquids, air fresheners. I'm wondering what the scratch and sniff includes.

I accidentally started a small fire with a candle that melted some plastic and set the smoke alarm off in one of the bedrooms - I didn't smell it. Thank the Lord, the smoke alarm had fresh batteries in it. But I can smell strong, tangy, unfamiliar odors and fragrances that don't often go by the everyday nose.

I'll look for some info - now I'm curious. I think, again, that smell is going to be hard to define in PD terms, but that could change at anytime, right? It will be individualistic but interesting to read about.

paula:)

[jeanb]

I've been tested 3 times now with the "sniff" test as part of PostCEP. And my husband has been tested once as part of a study looking for biomarkers. His study was named PROBE (not PARS) He also gave many vials of blood.

You scratch papers and are given choices from which to select. Frequently it just smelled like cardboard to me. But you have to select one from every set.

I wrote all about it on pdplan4life in this web page (http://www.pdplan4life.com/in-a-clinical-trial.htm):

Jean

[paula_w]

Thanks jean,

So could your husband smell better than you? It seems like my smell is very limited but i've not lost all of it. Without ever collecting any numbers on my smell, it sounds like a good one to look at individually. I think there would be many things that can affect smell, but lack of it consistently accompanies PD I guess. I'd venture to say they are going to need millions of people to draw any solid conclusions about smell.

We could do this alot cheaper and faster thru choosing household goods and each consumer purchases his own things to smell. Webcast sessions with instructions and demonstrations.....eliminate, eventually , much waste of money and time.

We are like snowflakes; there are only so many things you can do to correct or modify such complexity and make it better. But it is fun trying, and we are still very serious about trying to learn as much as we can and to have as much quality of life as possible.

We are looking for a better, faster way. In saying this, it is not tearing anything down; it's being part of the solution - rebuilding - quickly and competently.

There are many examples of data collection, but this is the best one I've seen so far I think, that the neurotalk group could have done by just receiving some consultation from everyone involved in designing an experimental procedure - and we could have put it online and collected from a very large and ever changing audience, along with publicizing it. Sorry that sentence went on forever.

We need treatment approved for short term use for advanced pwp and other illnesses. And as simply put as I can think of: there are faster ways to do it and it's time to give up the perks and perform.

why always me? ok thanks for reading, i'm working on getting offline some; the pace is making me too impatient and i do realize it.

I would like to watch the new world order form. It's interesting and futuristic. Getting new treatments ...well scratch and sniff away....hope something new comes out of it but don't look for it this decade.

I want to lose interest in all this.....but something always comes up.

thanks for the info for the vent jean.


paula

[olsen]

Hi Paula and Jean, I previously wrote and deleted a sarcastic reply on the regular topics about this that I thought we could all concede that problems with sense of smell do precede PD--and the $$$ used to perform this study could be used for something else....but then maybe I am incorrect. perhaps not everyone experienced a loss or dimishing sense of smell. My husband lost his sense of smell coincident with the onset of tinnitus ~32 yrs ago which the doc diagnosed as caused by a "virus". the man has experienced more episodes of food poisoning than I care to note due to this impairment--esp when i am out of town. Now I empty the refrig prior to leaving for more than 1 or 2 days.
will follow updates to this study, having nothing else to occupy my time. madelyn

[jeanb]

I lost most of my sense of smell about 20-25 years ago - a good 15-20 years before my diagnosis. My husband & I compared our answers on the sniff test - - surprisingly (to me) we agreed about 75% of the time.

They also took lots of my husband's blood to check for Alpha-synucleins and other things that might prove to be biomarkers.

If they identify family members of pwp who are losing their sense of smell, then why not send them to Yale for SPECT DAT scans? This has great promise to be a diagnostic tool for PD.

At a recent seminar, my husband asked the Neurologist from Mayo - "what good is it to identify people with very early PD?" The reply was - "so we can test possible neuroprotective treatments on them -- it may be that by the time people are diagnosed, it's too late for some of these treatments to work. And that's why they may be failing in clinical trials"

something to think about

[olsen]

Hi Jean , I understand the reasoning for determining pre disease markers--given there are no neuroprotective products out there, except maybe Azilect which seems to be questioned all the time, I think as Paula noted this could be determined in a much easier, efficient way--have neurologists', MDS' staff, sniff test all their PD patients, and add info to a central data base. The imaging testing utilizing scans such as PET Beta Cit, etc all involve isotopes; many are difficult to obtain and store and who knows how long they stay around in one's body....It is not news that loss of smell precedes other Parkinson's symoptoms in patients. I have heard this observation since early 1980's (maybe 70's)at least, maybe before. seems the olfactory structures are the first to be affected by Lewy bodies and in addition, the olfactory bulb is dependent upon neurogenesis......there have been prospective studies of PD populations which concluded that "Yes, PD patients suffer olfactory loss prior to onset of PD symptoms" from 5 to 7 yrs period. How many more times must there be prospective studies to determine this? madelyn

[paula_w]

Sense of smell does not respond to l dopa therapy. That makes me wonder if it can ever be legitimately used to diagnose future PD.

I am interested in why we lose it tho. Most other symptoms reflect a slowing down of systems in our bodies. What makes loss of smell different? It does appear to be common with pd, but at what point can we assume it's true and move on?

paula

[Richard Pocock]

Sense of smell does not respond to l dopa therapy. That makes me wonder if it can ever be legitimately used to diagnose future PD.

I am interested in why we lose it tho. Most other symptoms reflect a slowing down of systems in our bodies. What makes loss of smell different? It does appear to be common with pd, but at what point can we assume it's true and move on?

paula

I am new to forums and new to PD hope I am replying in the right spot
I have had a diminishing sense of smell for some years.
Some times I smell things and still smell the same thing days later

Richard P

[paula_w]

I am new to forums and new to PD hope I am replying in the right spot
I have had a diminishing sense of smell for some years.
Some times I smell things and still smell the same thing days later

Richard P

Hi Richard,

I can't smell much of anything - for example, my grandson is 5 yrs. old and I have never smelled his breath. I can smell his sweat after he plays hard, but [a little gross as it may sound] I don't know his "smell".

One thing that sticks with me, is a certain metallic smell when I was first diagnosed...it was weird, not sure where it originated but it stuck with me awhile.

Welcome to the forum....tho sorry you have to be here.....we still welcome folks to join us.

paula

[Adam B.]

My father has had PD for the past 5 years. He just told me today that he has lost his sence of taste, I figured out that its actually his sence of smell that he lost. He only noticed this 1 week ago. His Doctor told him that its normal and dismissed any concern. What are the chances of him having an infection unrelated to PD?

[Ibken]

Interesting topic. I particularly enjoyed my sense of smelll so I clearly sensed it's lessening - pre pd. I mourned its loss. And then it came back - but different - strange, deranged. It still seems to go thru changes. At one point I could simply imagine something and smell it.

Before any changes in smelling, I had a nasty experience. with some cleaning product in the bathroom in a particularly seedy mcdonalds at the beach. I had gone in,, straight to the bathroom and got hit with thhat odor and grabbed my kid and left immediately. Got straight in the car and DROVE and DROVE - windows down - to try get away from that smell in my head. My son had smelled it back at mcd's but it did not linger w/ him. I also recall the 'auara - vibe of that whole place was menacing. Had a nasty, nightmarish quality about it.

Currently, it's variable. Sometimes there, sometimes, somethings - not. Then sometimes better than others. It's etheric! :D

ibby

[Lexiegirl]

I am new to forums and new to PD hope I am replying in the right spot
I have had a diminishing sense of smell for some years.
Some times I smell things and still smell the same thing days later

Richard P

I was diagnosed with PD in Dec. 08. My first symptom appears to have been 15 years ago when I lost my sense of smell, which was preceded for a time by smelling certain things and still smelling the same thing for up to a week later. My first experience with this was the smell of cardamon in a bakery - I couldn't understand why that smell was so overwhelming to me at the time. After I left everything smelled like cardamon for at least another week. It was very strange to me, but I felt fine so I didn't worry about it too much. After a week or so I would go on to another scent that would not go away for a while. This went on for several months before I totally lost my sense of all smell. Since my diagnosis I am now on Requip XL 8 mg and Azilect 1 mg and 1200 mg of COQ10 and now for the first time in many years I am able to slightly smell some things. That's progress I guess :) It is an important marker if this is truly a first symptom of PD, as it was for me - something for our close, younger family members to be aware of.

[Conductor71]

I was diagnosed with PD in Dec. 08. My first symptom appears to have been 15 years ago when I lost my sense of smell, which was preceded for a time by smelling certain things and still smelling the same thing for up to a week later.

Hi,

It's really awful to get the diagnosis, isn't it? In my case, I was diagnosed last year but had symptoms for at least six years prior; I finally had to start meds at time of diagnosis :(

I feel strongly that we need biomarkers to tag PD earlier but feel that they need to be used in conjunction with PET scans or other markers to accurately diagnose. I do not have any loss of smell or diminished capacity to smell, so I sometimes wonder how those of us who don't fit the mold would be helped early by a marker that doesn't apply to everyone? I would like to see biomarkers studied in conjunction with genetics to see if there is a link in there somewhere- many who carry PARKIN mutations experience PD differently in the early symptomatic stage; just maybe there is a clue here that will lead to helping us all....

Laura

[vlhperry]

Hi,

It's really awful to get the diagnosis, isn't it? In my case, I was diagnosed last year but had symptoms for at least six years prior; I finally had to start meds at time of diagnosis :(

I feel strongly that we need biomarkers to tag PD earlier but feel that they need to be used in conjunction with PET scans or other markers to accurately diagnose. I do not have any loss of smell or diminished capacity to smell, so I sometimes wonder how those of us who don't fit the mold would be helped early by a marker that doesn't apply to everyone? I would like to see biomarkers studied in conjunction with genetics to see if there is a link in there somewhere- many who carry PARKIN mutations experience PD differently in the early symptomatic stage; just maybe there is a clue here that will lead to helping us all....

Laura

Dear Laura,

Those with genetic mutations do not lose their ability to smell. Also, lewy body disease is not a neccesary componant of those with genetic mutations.
Iron deposits are in my brain, a sign of anoroxic brain damage.

Vicky

[lindylanka]

Vicky,
I am so fascinated by your statement below. I have a variety of PD symptoms that are very similar to my maternal grandmother, who died many years ago. (Rigid, akinetic, jaw tremor) I also have another condition, vitiligo, that she also had. There are no children or other grandchildren with either condition. And I have mostly lost my sense of smell, first noticing it after feeling that food seemed very tasteless. I lived with my grandmother for 12 years as a young adult, so you see it raises interesting questions regarding genetics and environment. Do you know whether your statement below is the current view for all those with genetic mutations? It is interesting that at cellular level both conditions are ascribed to apoptosis.

Best Wishes
Lindy


Dear Laura,

Those with genetic mutations do not lose their ability to smell. Also, lewy body disease is not a neccesary componant of those with genetic mutations.
Iron deposits are in my brain, a sign of anoroxic brain damage.

Vicky

[vlhperry]

Please read the link to the article in the New England Journal regarding CORE. The post is found under useful Links and Resoueses.