Different Symptoms

[K-Town]

Even though every Pals is different, has anyone experienced..
A severe reduction of sense of smell?
blurred or double or triple vision?
A facial tingling sensation (on skin) after eating?

My Hb diagnosed 2 yrs ago, is having some varied symptoms. Wondering if others have some of the same.
PALS/CALS? What are some of the so called, "non ALS symptoms" you've experienced?

 

[BethU]

K-Town, yes I have experienced both blurred and double vision since my bulbar symptoms began. and they have progressed right along with my deteriorating speech and swallowing. I have had to get several different pairs of glasses. I know of others who have the same problem, but when I bring it up to my neuro he shrugs and says, "Not ALS." I have also experienced triple vision ... a street light will appear in the middle, with two smaller images on either side, like Mickey Mouse ears.

I've had an intensified reaction to smellls that lasted a few months and went away.

 

[handinhand]

yes blurred vision. My eyes are not as good and get blurred real easy ...My newwst problem is taste.. Nothing tasts as good. Everything is very bland.... I am really having a hard time dealing with my speech or should I say lack of... I sound like I am drunk at my best... I won't answer the phone any more unless it is Rich or one of my kids. No one can understand me. They can sometimes. [my family] I have to ask Rich to call my friends ,make my Dr. appintments, call backs.. Very hard..not liking this at all. HATE it actually.....

 

[BarryG]

Linda, I know exactly what you are saying about not wanting to talk on the phone. After my voice retired I avoided answering or making calls because no one could understand me and it tired me and them out to try. Now I am almost totally unintelligible and rely completely on my tools, my netbook, my IPod touch, my Palmtop3 and my pen and paper. My poor wife, she gets so frustrated with me when I try to talk.

Obviously none of these talkers are perfect solutions, I want my own voice back! But you know, I have had some really nice telephone conversations with family and friends recently using my talker and I am getting better at answering the phone too.

I hate this disease too but all we can do is make the best of it that we can and keep on.

 

[handinhand]

I am so darn slow with my talking machine. I think people would hang up before I get something typed in... I am still going to play cards with the ladies on the Ranch. I will take it with me next timeI go. I am unsure how people will react to it? I have been using it a little with Rich and family. Not enough to be really good or fast. I find the little hand held machine to hard on my eyes and I mess up to much. I have a bag that Rich brought home for my Lightwriter. I guess it is just taking it out for the first time. I will most likely tear up and I hate doing that... I need to do it if I want to say anything now. the voice is almost gone...Anything that starts with a C is no longer ,I go to talk and some words just don't come out... Sooooooooo strange what is going on inside our bodies?

 

[BarryG]

I can see how it would be hard to play cards and talk at the same time. If your hands are busy typing they are not able to do anything else, like how I can drive or talk but not both. The fastest way that I have to talk is my netbook with speech software, it has an almost full size keyboard so it is much easier to type on than my IPod touch or Palmtop3. Of course because it is about the size of an sheet of paper and about 1 1/2 inches thick it wont fit in my pocket so I have the others for when I am out and about. You have to have more than one device and because the netbook system and IPod system cost me less than $1000 I am able to have both.

My SLP calls me her tester and we have been working with NextUp to make changes to the program to make it easier to use, especially on the phone.

I hope that you can get better with your new voice Linda and I know that your friends will understand, mine do.

Remember, practice makes perfect.

Barry

Ps. I have been hung up on lots of times and am working on a "Please hold for a moment message" so that I have time to get set up.

 

[BethU]

My Dynavox came with a "Please don't hang up, I'm using a computer to talk," pre-loaded phrase, and I've kept it because it works. I also have programmed in "This is a computer-generated voice. Please be patient while I type responses." And "Hang on" which I can punch while typing an answer and people start "Is anybody there?"

It's amazing how many phone conversations you can gave with just the standard buttons: Yes, no, hello, good-bye, right, great, thank you. Many routine calls, people don't realize they're talking to a computer.

 

[sesl]

Now that story about your eyes is interesting as my mother (who has mostly bulbar symptoms) spent most of Christmas Day lying on the bed with sore eyes. The glare was bothering her. Everyone (including me) thinks it has nothing to do with ALS. She is having trouble with sore/irritated eyes.

I will let her know that this does seem to have some relation to her ALS, but it seems no one knows quite what that relationship is!

sesl

 

[brooksea]

My husband also complains of vision problems. Don't know if it is blurred or what. But his says his eyes are "going." He has asked if other pALS have the same problem.

 

[joelc]

CJ, you can tel him there are a lot of us with the same problem, me too.

 

[K-Town]

Thanks for your responses.
Does everyone with Bulbar symtoms sound nasally? Like congestion, except the nasal passages are clear.

My husband also complains that it feels like a steel bar is running up his spine and neck. I assume this is due to muscle atrophy in the neck and spine.

His skin has also become sensitive (face n neck). One day it looksgood then kinda rasht for a few days then all is ok again. Anyone else have newly developed sensitive skin, not related to bed sore or nutrition?

He seems to also complain about "Pressure" in his head. Like how you might feel with barometer changes. The MRI doesn't show anything. The ENT (ear nose throat specialist) sees nothing wrong.

Anyone else have similar complaints?

This is important to my husband, he has not accepted this diagnosed yet. He is still looking for answers. He needs to know if others experience these symptoms too.
I think there are different types of ALS besides limb and bulbar onset, and Fast or slow progression rates. Doctors don't keep a good enuff tab on their ALS patients symptoms. And Pals have too hard of a time communicating them. Patients like me website is good, but this forum is better for discussions and support.
We appreciate all of your "symptom" responses.
Thank you.xo

 

[handinhand]

Yes, very common with Bulbar to sound nasally... I don't like the sound of my voice at all but that will make it earier to use my voice machine. Her voice is much softer..lol I think you can talk to 10 different people with ALS and everyone would have some things the same and other things much different... Hard to believe it is all clumpt into ALS.. So much going on in our bodies and it just hits people in different places ... Mine started with slirred speech. It has been almost a year on my Birthday Feb 6th is when i was diagnosed. I can hardly talk now, just some in the mornings... I can eat soft foods like pudding,applesauce and my favorite, malts.... Swallowing is worse. I am still strong in my limbs and other then getting tired I am doing good.....Still going out to lunch with friends,just order soup of the day! play cards ,take trips, Life just goes on and I try to to something I love everyday. We are here for you. Please keep in touch? Hugs, linda

 

[BethU]

K-Town ... I don't think neuros pay any attention to symptoms at all, once they have made a diagnosed. The team of therapists generally tracks developments, but if it's outside their area of expertise, they tune you out.

This is not meant as a criticism of neuros and therapists, just that once they have made up their minds, they don't get involved with the difficulties of a PALS' daily life, unless it's something they can write a prescription for or otherwise know how to fix.

 

[irismarie]

definitely have vision problems and painful eyes

 

[Katie C]

Glen has always had awful vision, but i suspect it's worsened. I say this because he has trouble finding things that are perhaps moved from their normal place.. say, to the left or right of where they might usually be on the shelf, or a shelf up or down. Those are the times I wish he was more able to understand what was going on and communicate changes to me.

For some reason known only to them, his company still has his voicemail on his work phone number, although he's been on disability since October. I will occasionally call it just to hear Glen's "real voice"... it's astounding how much it's changed.