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?

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!

ibby

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.

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

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

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