so many questions chris roski

[chrisroski]

I am fairly new to this forum. I was diagnosed with PLS in January and since then, my voice is almost understandable to everyone. Someone lent me an Ipad that talks, but the voice is a guy and is has a accent which makes it hard for people to understand him also. The swallowing is getting worse, so I have some questions:
1st Does anyone out there smoke & if you do, do you find your symptoms are worse?
2nd Anyone who has a Peg I would like to know if you think it helped you. Where you still able to eat food or just stuff thru the peg? Did it help with the fatiue, I'm so tired all the time.
Do you have issues about the Peg you do not like?
3rd Those with the voice issues, how do you deal with everyday? I find it so frustrating, can't even talk to my grandkids & it makes me so sad. I feel so left out of social gatherings & really don't want to go anywhere anymore. Sometimes I just wish this would all end. I know there are people much worse than me, I still have my arms & legs working, but how long will that last. I have always been so independent & now I have to depend on people to talk for me and it drives me crazy. I just am not handling all of this very well. Any suggestions?
What really makes me mad, is that we have so much technology today, chemo & radiation for cancer, organ transplants and yet they can't seem to find a cure or drug to put this into remission. I know that they are researching all the time, I just wish they could find something so we could all have a somewhat normal lifel. Sorry this is a bad day for me and I'm just venting.

 

[momap53]

chris, I'm so sorry that you're having a rough time right now. We all get a little down as we lose each function. It takes a bit of time to adjust to "the new normal". Many of us take an antidepressant or antianxiety medication to help us deal with the changes that are happening in our bodies.

Swallowing issues: Have you talked with your dietitian or speech therapist about some physical tips and techniques that you can use to make swallowing a bit easier? They are an excellent resource.
Most PALS have problems with thin liquids at first and need to switch to something thicker. There are products available at the drug store that can thicken liquids. Make good use of a blender. If you have a heavy duty one it will puree just about any food you'd like to have. I don't have a peg yet, but many on the forum do report good results from having one. It does reduce fatigue in that you're able to get the nutrients your body needs with much less time and effort. Some have reported taking an hour just to eat because they're trying so hard to reduce choking episodes. There's a danger of developing aspiration pneumonia if foods go down the wrong way. Many put their medications in applesauce or puddings because it's easier to swallow than taking them with water. Once you get a peg most meds can be crushed or obtained in liquid form and taken via the tube. Just check with your pharmacist first. You may continue to eat with the peg as long as it is safe to do so. There have been several threads on the forum discussing these issues. Use the search engine and/or the tags at the bottom of the page. Rose has even posted photos.

Check the archives about the technology that others are using for speech.
Good luck.

 

[Tokahfang]

The only question I can really speak to is the voice.

When I started needing to use a speech device, I was just as frustrated as you. And I'm not going to claim it got entirely better, but it does get better somewhat as your family and friends get well trained. You figure out how to deal with people outside in the world, too.

For instance, my close family and friends all became experienced at noticing when I was looking up expectantly and waiting for a chance to hit "enter" and have my say, and they all shut up when I do that. For people at stores, I type in my input and then show it to them, which seems to work better than "talking" to them.

Do you have a choice of voices? Nextup Talker, AT&T's voice program, comes with two by default and you can purchase new ones for $30 a pop. I like "Audrey", a classy sounding British lady when in normal life situations, but use "Mike" in high volume situations or on the phone. They work on my freebie program, etriloquist, too, so maybe they are standard and you could buy one from AT&T? I'm not sure which standard the Ipad uses.

 

[Alyoop]

Chris
Why don't you post these questions on the ALS forum, as the eating and other bulbar symptoms are shared by both and the solutions are exactly the same. It's way more active. Just a thought.

Aly

 

[chrisroski]

thanks so much for your reply. I do have the thicken up stuff, but that doesn't seem to be working to good lately. I do not have a blender, it broke, so guess I'll have to get one. In for the voice thing I have no idea what those devices are you were talking about. I'm lucky I can figure out the computer sometimes, but I will ask my daughter's they know all about that stuff. I'm 64, & came from the age of pencil & paper, these days it's a whole different thing. As for posting on the ALS forum I'm not sure that I am doing this right. How to post on the ALS forum. Sorry don't mean to sound dumb, so let me know what I should do. Appreciate the information very much

 

[04grace2]

Hi Chris,
I have been reading posts on this forum for almost a year. This is the first time I have written anything. I was diagnosed with PLS about a year ago. I began to have a lot of trouble with swallowing. It was quite frightening. My doctor started me on Baclofen. At first it didn't seem to help, but as I slowly increased the amount (now 10 mg 3 times a day) the swallowing problems are under control most of the time. From what I understand, the swallowing and voice problems in PLS tend to be from spasticity rather than weakness. I know it may not be the same for all PLS patients. I do understand your anxiety. I pray that you will find something to help soon.

 

[chrisroski]

Welcome Grace, This forum is really helpful & everyone is so nice. It is nice to talk to people with the same problems. I am going to check with my neurologist about this Baclofen maybe it will help me. They want to put a feeding tube in, but I'm trying to hold out, but it is getting rough. Will let you know how I make out.