Sensitivity to smells and chemicals

[mike b]

Hi,

My wife was diagnosed with PBP in June 2008. She had experienced symptoms beginning in May 2007 but no one could figure it out. Finally Dr. Peter Bosch at Mayo Clinic in Scottsdale diagnosed it. My wife has been taking Rilutek and had the PEG inserted in December this year. She is not using the PEG and has chosen to use an organic diet with lots of smoothies of her own design. It makes her happy and even though it is not a pretty sight to watch her eat, she is at peace with it.

My question concerns her sensitivity to odors from cleaning fluids and other household smells. Her throat tightens up and she has to breath through a surgical mask or cloth. She is convinced it is because she detoxified her body through chelation therapay and that her body is now sensitive because of her detoxed state. I wonder if this is just a typical symptom of PBP and we are entering a new stage.

She is fully ambulatory and has experienced no limb weakness. Her speaking is very slurred and she uses a Dynavox machine to help her speaking. Her drooling is better since she is on the organic diet and her weight loss has stabilized. (she is down to 119 form 130). She has a fantastic attitude and is an inspiration to us all.

Anyway, does this ring any bells with other PALS or caregivers?


Mike

 

[Jennifer51]

Yes I also have problems with the smell of some cleaning products, they seem to choke me...some tastes have also changed, although I am supposed to be nil by mouth now. Your wifes progression is much slower than mine, long may that last.

 

[joelc]

This is common for a lot of people who have ALS too. I used to have this severely and had to leave the house when my wife was cooking. It passed when I got my trache and vent. It was really a major pain!

 

[BethU]

Mike ... I had a period of intense aversion to spicy odors or tastes, too. It lasted about 6 months, but my reaction was the same as your wife's ... I couldn't breathe, and had to get away from the odor fast.

I have ALS, but I think it might happen with any neuro problem that affects the bulbar area.

 

[hopingforcure]

I had that same problem, ALS and MND really do heighten the smell sense, it is something that many of us speak of, maybe we can all work for a perfume factory.. LOL, but that would actually probably not even smell good to us..

 

[mike b]

Did the reaction go away eventually?

 

[Al]

My sense of smell is heightened and has been for a few years.

AL.

 

[Marjorie R. Wilcox]

Rick's sense of smell has diminished so much he can only smell something strong, like a skunk. Funny isn't it, that we can be different. Rick has respiratory symptoms too but mild during the day. He's on a bipap and sleeps at a 45 degree angle at night. I am disappointed that he doesn't smell a wonderful dinner cooking.

It isn't all bad though that he hardly smells anything! (ha ha ha)

 

[Dana Razo]

My husband can not handle the smell of diesel nor any type of forced air ie. air conditioner, heater even the blankets being fluffed on our bed,

 

[BethU]

I had an intense aversion to spices (especially cinnamon, which I normally love), both taste and smell. It lasted about six months, and fortunately went away. This is a crazy disease.

 

[GlenBrittle]

I would not say "intense aversion" to chemical smells , but , Yes I can smell them before anyone else around me.

I have developed a like for cayenne pepper. I have one of those spices bottles full of it , and tend to use it as a salt shaker when I get the urge. Mac&Cheese + cayenne = yummy

There is a downside to the cayenne pepper . Its those under-leg noises nasty enough to make the cat sneeze . Yeah , I find humor in most things these days

Glen