my mil has vascular dementia, with lewy body and parkinson. many years ago she completely lost her sense of smell. my husband has also completely lost his sense of smell. i am seeing things in him that are scaring the hell out of me now. i cannot seem to find anything on this area.

mabe it is coincidence, mabe he is scattered from all that is going on with his mom...but i know he is losing some memory, consistently.

i notice his hands are shaking, consistently now.
odd things are beg. to happen with him.

i know he is under an enormous amount of stress, but the loss of smell is the one link he has to his mom...that noone else in his family suffers.

if anyone has any info on this i would surely appreciate it alot. thank you. autumn

((((((((((((((((((vicki)))))))))))))))))))))))
he will not go to a doc, i have begged and pleaded with him, have to let it go for now. have to wait, you know how this goes, not going to give up tho, thanks so much.
he bought himself a guitar and a stand, he is great, with the guitar, had a band in the 60's made a record, his ex made him choose her or the band, i have always tried to encourage him to play, i told him i would never have placed that choice on him, ever. it only took me 26 yrs for him to see the light.
only took him 25 yrs to see the light and get me this pc, so i could finally join the 21st century. now he gets himself a guitar, i say thank goodness, i cried happy tears at him finally being able to give this gift back to him. i see him thinking about it...i will share the man's idea of a wedding with him tonite, see if i can accomplish something with some honey now.love finds a way. i will. changing my tune around here now. beeeeeeeeeg hugs, autumn
love finds a way. thank you so much for hanging in with me and not giving up with me, i will remember this with all of you. i will not forget, and i will do this too. i will hang in.

thank you is not enough, but it is all i have.

Autumn, trying to adjust to what may be coming around the corner is never easy. Is it possible now to get him to to Dr. so you will know what you are dealing with if anything?

Always remember, we are here for you, Autumn.

Vicki

Sugarlips

thanks (((((((((((((((((((mary)))))))))))))))))
well he isn't laughing anymore. it has turned somber around here and a quiet desperateness now. present moment living. i am grieving. he is in shock i think. we will get thru this. beeeeeeeeeeeeg hugs to you for feedback . autumn

Hi Lost,
Well, there's good news and bad news from my experience. My Mom has Parkinsons Disease (PD) and she lost her sense of smell, oh, years and years ago (she was diagnosed 6 years ago). In the course of my reading, I learned that's one of the earliest signs of PD. The good news is that PD is really treatable. Even at 80, medication helped my mom tremendously.
Best wishes!
Mary

maryg

ohhhhhhhhhhhhhhhhhhhhh vicki, he is just laughing about it all of the time...he is not going to go to any doc.
well at least i have done my part for now and brought it out in the open .
lucky i have had practice with denial huh?
today is sad.. i guress it is the gift of today . love and hugs and so much more vicki, wondrous person you. autumn

I'm so happy your husband has agreed to go see a Dr. and to get everything else in order. It was very brave of you Autumn to talk with your husband about this. Let us know what you find out. You are part of our forum family.

Vicki

Sugarlips

i'm with angel on this one, may. so much was overlooked with my mil as well. i had to be a detective and study and research and put their feet to the fires and still it was for nothing.yup, lots of frustrated anger.

welp, update.

i had the big talk with my husband and it turned out ok for the first talk. i told him i wanted to get all of the paperwork done asap and i was wanting to do the same for him. he knows my concerns...he is denying alot... naturally. jim your info on the grieving process of the patients helped me alot in being gentle with my husband in the way i approached him. i asked him at least to go to a doc and try to find out if there was any other reasons for this stuff to be happening.

it is going to be hard.

since i have been on zoloft for myself i have personally experienced a 100% improvement in my own memory. it has been phenomenal.

so for now i will have to do it all, paperwork etc., and probably have to wait for it to reach a crises point with him for me to get his attention. lucky, i have had so much practice.

i get laughed at alot around here... because~~ now everytime something odd happens, (and it keeps on happening,) he says oh yeah, i forgot it is my dementia causing this one.
and i am not amused... , ok mabe i am. if we cannot laugh at ourselves, we lose the war.

'life is too mysterious to take it serious...' mary englebrett

'if the end of the world comes, i will still plant my apple tree.' martin luther

I can't believe that they never said anything. I know for myself the more information the easier I can handle a situation. You must have been angry when you found out the truth. I know I would be mad.

"When we walk to the edge of all the light we have and take the step into
the darkness of the unknown, we must believe that one of two things will
happen. There will be something solid for us to stand on or we will be
taught to fly."
-- Frank Outlaw

I noticed my husband had something wrong many years ago.He was shuffling his feet.Having cordination problems.Doctor dimissed it.Quite a few years ago my husbands cardiologist had blood work done.I rceived a cal , they were concernd .What ever showed was consistant with a nother disease which I have forgotten.So they tested again and it appeared fine.Well last year this same doctor revealed he has has the beginning of Parkinsons for 11 years.With all the conversations I had with this doctor it was never revealed to me.He started with the severe hand shaking and also the legs at night.When he becomes agitated his hands will shake.He is unable to lift his head, or hold any thing with out shaking.Unable to put pants , shirt or coat on.He stumbles more frequently.

(((((((((((((((((((jim))))))))))))))))))))
bless you so much!!!!! i really appreciate this one so very much!!! lots of good stuff in here to help. muchos gracias dear friend. hugs, autumn

hey, heck, I'll go ahead and post that info here--this is where you'll see it.

first link is the main page for U. Of Iowa, Center On Aging.

http://www.uiowa.edu/~centrage/index.shtml

click on publications to get to this page

http://www.uiowa.edu/~centrage/res7_pubs_frm.htm

and follow your nose from there.

Publication Titles Are

1. As Memory Fades - a primer for caregiving techniques (information for the lay person).

2. Travel Guidelines - for caregivers of patients with dementia who plan trips or travel south for the winter (information for the lay person).

3. When the Pieces of the Puzzle Don't Fit - the basics of dementia diagnosis (information for the professional provider).

4. When Traditional Care Falls Short - care concerns with non-Alzheimer’s dementia (information for the professional provider).

5. Outside the Box - provides for alternatives for least restrictive protective measures that work in acute care settings (information for the professional provider).

6. Coping With Violence: If Your Loved One Changes


7. Feeding Suggestions for People with Movement Disorders and/or Cognitive Loss

8. Helping Your Elder Adjust to a Residential Facility

9. Looking for a Nursing Home



Use today wisely,
It's the only one we get.

Oh, for so short a time,
we are on loan to each other.

Jim

[This message was edited by Jim Kallio on November 03, 2002 at 09:10 AM.]

Hi Autumn--

Very shortly I'll be posting a referenace to a site with information on th subject here.

The site is the University of Iowa, center for Aging.

There a a number of papers written by Dr. Geri Hall that may help you.




Use today wisely,
It's the only one we get.

Oh, for so short a time,
we are on loan to each other.

Jim

((((((((((((((((brenda))))))))))))))))))))
thanks so much for your words..i treasure them.

i went to bed in shock last night, but i held onto your words.

yep i am dealing with the same sort of things as well.

so i am going to talk with him about this and try very hard to get all of the paperwork and legal aspects taken care of asap. it shall be challenging. our husbands have alot in common it appears. self centerdness? in spades.

((((((((((((((may))))))))))))))))))
i so appreciate what you had to say as well. that is why i went kinda slow with this one.

my husbands mom lost her sense of smell, many many years ago, and the one connection is , this is when she kept saying i am losing my memory and cannot remember anything anymore. it seems to be the same deal with my husband as well. if i had'nt seen it the first time round i might be more skeptical. i am going to try to talk with him and ask him to at least be evaluated for parkinsons, and whatever help we can get now. it shall be interesting as when he retires in a few years we will lose our medical coverage. unless we have the funds to self pay.

rich i thank you so much for taking the time to share so much info. from what i have read, i need to be paying attention now. he has lost his sense of smell entirely. i mean it has been gone for years. it has never come back. there is no fluctuations. it went and it was gone forever.

i have been learning to trust my gut instincts with my husband's mom and they have been true friends with me along the way.

(((((((((((((vicki))))))))))))))))))))))
you are so right on the mark. bless you.
yeah my work is cut out for me. getting him to go the doc and go from there is a really good beg.

i have been slowly opening my eyes in this. my mil's dementia never fit with ad. altho, there are similarities, it is different in so many ways. i am beg to connect the dots now. i guess it is a good thing for me i have had so much practice huh?

hugs to all, autumn

if the end of the world comes..i will still plant my apple tree...martin luther

thank you so much for all of the info and feedback. i really appreciate it. i guess i will have to pay more attention that i originally thot and hoped.

overwhelmned yet very grateful to all of you, hugs and more, autumn

The one thng mother never lost was her sense of smell and taste.After she had her shower and I was putting on her pajamas she mentioned how nice they smelled.I hung them out side , today, and there was a nice brisk wind.She use to get indegestion and heart burn, no more.Her sense of pain is intense as is her hearing.<p>I believe any of us who are dealing with someone with dementia fears another wilL get it.I do believe we begin to put a person normal changes into our own fears.SO MANY FACTORS OF LIFE CAN CAUSE A PERSON TO CHANGE.

Autumn, I can 100% understand what you are feeling. I am scared as all heck because my mil's AD is genetic and my husband is showing signs. But then he might just be a self centered , narcessitic @$$^)&# at times. But then maybe I am so scared of him getting it young that I am seeing things that aren't really there. Maybe stress has taken its toll on both of us. He definitely has lost his sense of smell. But then we recently discovered a mold problem so it could be allergies. He is non stop talk, not conversation, sometimes. He just tells me things of little or no importance. He doesn't seem to understand why I can't read the newspaper while he is in the room. Do you see where this is going? There are symptoms and there are reasonable explanations for each and everyone of them. Maybe I am in need of testing not him. I loose everything and then admit that I might have but I didn't. That is a running joke with my kids. But then my husband refuses to discuss it. So unfortunately if he should be showing early signs (and I can't think about it because there is nothing that I can do!) he will not go to the doctor. So to catch AD while it is still in the early stages is a fantasy in the laboratory. One of the earliest symptoms is a personality change. (can appear as self centered-ness I believe?) The LO will not understand reason because the reasoner is broken. So much for early diagnosis and treatment or non diagnosis if he doesn't have it.

I am having fun, anybody want to join me? Oh you're already here!

Scientists Sniff at Home Alzheimer's Test
By Rita Rubin, USA TODAY
May 9, 2001

An Arizona company this week launched a Web site that sells a $19.95 "scratch-and-sniff" home test to screen for Alzheimer's disease, but some scientists are questioning its value.

In addition, Food and Drug Administration official Steven Gutman said Wednesday that the agency will be "looking into" the test because its maker never sought FDA approval as required. The company says it has asked the agency for written clarification.

For now, FMG Innovations Inc. of Scottsdale is selling its "Early Alert Alzheimer's Home Screening Test" online but hopes eventually to make it available in drugstores and other retail outlets, says company president Steven Feyrer-Melk. Feyrer-Melk says the company's toll-free number has not stopped ringing since the product was launched.

The test consists of 12 strips of microencapsulated odors, including cinnamon and rose. Users are supposed to scratch each strip, sniff and identify the odor. If they miss three or more, they should consult a physician for further evaluation, according to test instructions.

Feyrer-Melk says his business partner conceived the test after reading that a loss of smell was associated with Alzheimer's disease. They then contacted Richard Doty, creator of the University of Pennsylvania Smell Identification Test, on which Early Alert is based. Another company sells a $26.95, 40-odor version to doctors, hospitals and employers. Early Alert's Web site cites a number of published studies linking an impaired sense of smell with Alzheimer's disease.

But New York Psychiatric Institute psychiatrist Gregory Pelton, co-author of one such paper, says Early Alert is "fundamentally inconsistent" with his findings. Pelton's team studied people with mildly impaired thinking ability. Only those who didn't suspect their sense of smell wasn't up to snuff were at a higher risk of having Alzheimer's.

Last month, National Institutes of Health researcher Linda Nee reported that smell tests were unreliable in predicting which individuals with a strong family history of Alzheimer's would go on to develop the disease. Early Alert "would cause people to be falsely relieved or falsely alarmed," Nee says.

William Thies of the Alzheimer's Association calls a possible connection between the sense of smell and Alzheimer's an "interesting research subject." But, Thies adds, "this is not a test that is ready to be marketed to the public in a broad way."

Doty, director of Penn's Smell and Taste Clinic, attributes such comments to "the lack of knowledge on the part of people about the sense of smell.

"What's really unfortunate is that the average physician, in fact, the average neurologist, is not aware of this," says Doty, a psychologist.

Read the complete article here...

Additonal Links of Value:

"Neuropsychology" Journal (Original Article: "Olfactory-Evoked Regional Cerebral Blood Flow in Alzheimer's Disease")

Smell Tests for Diagnosing Alzheimer's (Health and Age)

Brain Work This Week, "Smelling Trouble" (Dana Foundation)

Johns Hopkins University Smell and Taste Disorders

Smell Test to Diagnose Dementia
(c) BBC News
Tuesday, 4 July, 2000

Asking patients to identify everyday smells can help to diagnose Alzheimer's disease, according to doctors. Doctors in Worcestershire use a "smell test" to determine whether a patient has the brain disease.

They ask patients to "scratch and sniff" from a "smell book" and to identify the scent. Previous research has established that Alzheimer's disease affects a person's ability to smell.

The "smell book" was developed by doctors at the University of Pennsylvania but was only recently introduced to the UK.

Dr Alison Gray, a consultant psychiatrist at Worcestershire Community Health Trust, is one of a few doctors in the UK using the book. She said elderly patients with Alzheimer's took longer to identify many of the smells.

"They take longer to identify the smells, they often make mistakes and sometimes they cannot identify it."

Scratch and sniff

She said patients are asked to identify smells that they should be able to recognise.

"The book is, perhaps, a little American in that some of the smells are things like root beer, pizza and other things that maybe elderly Europeans may not be reasonably expected to know.

"But we use 'cross-cultural' smells like lemon and peppermint and other food smells.

"Patients 'scratch and sniff' a panel on the book and are given four choices. These could include things like chocolate, cheddar cheese, gasoline and leather. They are asked to identify the smell."

Dr Gray suggested that the "smell test" could be used in future to diagnose people with a risk of developing Alzheimer's.

"The test could have long-term relevance in that we now have some treatments that seem to be useful in slowing down the damage to the brain.

"If we could use this test to identify people who may develop the disease we could tackle it at its earliest stages."

Dr Gray will present details of the test to doctors at the annual meeting of the Royal College of Psychiatrists in Edinburgh on Wednesday.

"I will suggest that this is an area we need to look further at. We need to replicate it on a larger scale."

Read the complete article here...

I recall a news clipping about a new scratch and sniff test for AD (or at leats that is what the headlines on CNN said). Apparently the test is actually becoming commerically available. I need to do some research on it. I am heading down to NJ to spend the weekend with my mom and brother, but I will try to run a search or two. Maybe http://www.agelessdesign.com?

Rich