Parkinson's Disease Support Group

Hi, it really saddens me when I hear of people who haven't had PD that long progressing quite rapidly, the age of person when diagnosed maybe a factor.
I had a "Phsychotic Episode" which is how my Neuro called it. It took 10 weeks out of my life and was a living hell, but in the fog of that time I do recall having smell and tasting problems and I hasten to add those symptoms could just have been part of my Phsychosis and not connected to my PD. In the end my Phsychosis was caused by 2 medications I was taking at the time, as soon as they stopped those 2 meds I was fine again regarding my smell & taste.
I was on so much meds at the time it was unreal, pretty scarey.
Your Mom may need to have her meds checked for side effects I really think she needs help as she maybe getting depressed which is understandable.

I wish you well... Dirk !!;O)x

I hesitate to comment because every case is so different, but your Mom's case seems similar to my wife's. Getting the meds right is the hard part because I believe it a combination of the disease process and the person's reaction to the medication. We like to see things as "black or white". In my wife's case the meds only brought out the problems that were already there or would soon "rear their ugly heads". She lost her sense of smell first(about age 60) and then the diagnosis of PD(63). The first 3.5 years were great. With the CR Sinemet at first and then the agonist later, you would never know that she had PD. Toward the end of the 3.5 years she began to realize her mind wasn't working just right. We brought this to the attention of the Neuro and he just shrugged it off and put her on an anti-depressant. Then "WHAM!" The PD hit her like a rock. It was a rapid decline starting with the terrible Anxiety/Panic thing. Then a whole host of other things followed- agitation, hallucinations, paranoia, the works! The old Neuro didn't know what to do! The new neuro scaled back of the sinement, used only the CR at night, and added the anti-pyschotics, etc. These helped initially, but the Neuro could only do so much. She is now being treated for the dementia, in addition to the PD. It really irks me when people say or imply they know someone who's lived with the disease for 20 years and they are better off than my wife. It's like you aren't using the right meds, or you don't have the right Neurologist, etc. I've got enough problems without having to listen to these comments coming from people who generalize.

I too have had a definite decline in my sense of smell and taste. I have only been recently diagnosed in December but in thinking back this sense of smell thing has been going on for a couple years! And when I think back to when my mother was alive, she also had PD, she would say often that food didn't taste right and then she would find something that really tasted great and would relish that for awhile! I have done the same thing. I find that I no longer have a taste for almost anything sweet, but I love salty foods and things like citrus tastes. I had a smell test at the Ear nose and throat specialist that I see for my sinus problems and I failed miserably! 40 scratch and sniff cards and I only identified 7 correctly! I have read that this is a side effect and can actually be a very early sign of PD.
I hope your mom feels better! this disease stinks! That I can smell!

Thanks all of you for your support and messages.
Mom called tonight and i couldn't make any sense of anything she said. She was all mixed up! My dad was there and I could hear him in the background and he asked who she was talking to and she said she didn't know. He took the phone and appologized and said she'd been that way most of the day. He didn't go into work because he was up most of the night with her. He's taking her into the neuro as soon as he can get her in there.
I'm a mess emotionally. I'm loosing my mom! It hurts so bad!

Thanks again for all your help and support.
BT

Hi -
I am so sorry you're having to deal with this and my sympathies to your dad as well. Some days this is what I dread - being a basketcase for my husband/kids, etc., but I thank God every day I'm not there yet and can still complain about things :)

I have lost much of my sense of taste and smell. I get them back occasionally and I rejoice! Salty foods and sweets tend to hit the mark better but I'm sure that is not the answer as all of us with PD would be terribly FAT!

Make sure your dad mentions your mom's forgetfulness (phone call) as there may be some other issues that they he (her neurologist) might be able to help with.

Good luck. My prayers are with you.
P.S. - My thanks to you for being a great caregiver to your mom.

HI
apparently thats one of the first signs of PD ...losing sense of smell. My Dad lost his years ago. He is also similar in many ways to yoour Mum. he is diagnosed only 5 years and about 2 years ago kept saying to Mum that he thought his mind was going. We have found for the last few weeks he is very mixed up but also hullucinating. it is hard to evaluate how much of all this is caused by the meds and how much is dementia, which in mnay cases goes hand in hand with PD. Medication interactions is another problem. There are so many general meds that dont react well when taken with Parkinsons meds. Its all about getting a balance I think...and we are still struggling with that issue here.

I'm a young onset PDer, i was diagnosed at 36, i started losing sense of smell many yrs before that and didnt know why. my dad scares me cause he also has lost smell so does that mean he's goin to have PD ..............? i dont know but we'll see as for it coming on fast, it comes on different for everyone just be as possitive as you can and love every moment. PD or not life is short!

xo
bpw

I hope you don't mind me jumping in here. I have Generalized Dystonia, but,I think also PD. I am 41. They were considering DBS for me for the Dystonia. After having the neuro pscych test and doing so poorly on memory, I would not be the least suprised if PD is primary. I knew I lost my sense of smell when I was working at the airport and a conveyer belt was on fire or something, melting, and I could not smell it. My co-workers were looking at me like, how can you not smell it. And my memory, that is not part of Dystonia but, PD. If this is to be then so be it, thank you for your post on this subject.
Deanna

Martini67,

My sense of smell is so keen that I can't go into candle shops, be around people with strong perfumes, etc. I can even smell dust! Nevertheless, I, too, have lost my sense of smell (and taste, too)...twice, actually, once for almost two weeks and the other time for about one week. The cause for such loss was an awfull sinus infection each time.

So, while it may be PD, it could be a sinus infection or, perhaps, any number of other medical causes. The time to be concerned about PD is when the loss of smell is accompanied by movement problems.

I wish you and your father well.

I lost my sense of smell over a year ago. I was working at an airport and it was a conveyor belt burning . The fumes so strong my co-workers could not understand I didn't. And the family has noticed other times they could smell and I could not.