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lizzie11957

Active member
Joined
Nov 7, 2010
Messages
92
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Centerville
Thoughts from a PALS (Person with ALS): I'M NOT DRUNK DAMMIT!

I was diagnosed with the bulbar form of ALS on 10/18/10. As it gets harder for me to communicate vocally, I decided to start a blog. The link to my blog appears above. The blog includes my first thoughts and how I feel now (2 months later). What it doesn't include are those thoughts still to come. As I read some of the blogs on this website, I realize that this disease is going to get more and more difficult to deal with. I'm going to continue to try and stay positive and make the rest of my life meaningful and joyful as it was before this ALS diagnosis. One of my favorite quotes has always been, "Life is not about waiting for the storm to pass, it's about learning how to dance in the rain." I'd love to hear your stories and and advice on how to continue dancing in my rain as the disease progresses.
 
Lizzie, as someone who was where you are now three years ago all I have to say is keep your positive attitude and get a speech device now. This will allow you to practice and will also allow others to get used to the new you. You don't have to spend thousands for a dedicated device, I use both a netbook computer with speech software and an iPod with speech software and both devices cost me less than $500 each.
 
Lizzie, I was diagnosed in Sept 2009 but had been displaying symptoms for several years and tried to ignore them. I am still able to talk and eat but both require effort. This fall I had to place my mom in a nursing home and she passed away on Dec 10th so I have been under abnormal stress. My sleep was non-existant for the last 10 days of her life and I have payed the price. I can tell you that the best thing I have found to help my body and my emotions is to take care of me. Lots of sleep, naps are ok too, and plenty of "letting go" (that is the hard one for me! :)

By that I mean, live in the today - don't try to get the old you back. Don't worry about the future and what might be. Continue to prepare for the changes that we will no doubt encounter, but allow others to assist you in your day to day activities so that you have energy to do what makes you happy. AND, this is another big one for me, learn that you are the same intelligent woman you were before ALS and can still make a big impact on those around you however you communicate.

Hugs
 
Yes very good advice. I have an ipad and iphone, I struggled so much before getting them. Most people don't mind, and if they do it's their problem!
 
Thank you for the kind and wise words. I wanted an Ipad, but my husband mistakenly got me a nook. I don't want to hurt his feelings. Can you get APs for the Nook to help with speech. Just wondering. ;-) Still Dancing in the Rain! liz
 
Liz, I read your wonderful blog yesterday. Your friends sound so very supportive, which is a huge plus. I have very little bulbar involvement--only when I'm tired. My speech is going by way of my neck; vocal chords. Symptoms began in my feet, and damage seems to be moving straight up the spinal column. Early on, when I knew my legs would be going, the thought of losing hands or speech felt impossibly hard. The reality is, grace is given when it's needed and not before. Having a vivid imagination is not friendly.

I'm not good with technology, but if you go up to Barry G's avatar, click onto his name, you can post your nook question right on his profile page. He, along with many others, are very savvy.

You've gotten some great wisdom and advice already. As one who started from the other end, so to speak, of the disease, I've found that while I may fear what hasn't happened, if I live in the day and truly trust the Lord for not only today but all that's ahead, my main condition is cheerful. Great friends, neighbors and wonderful husband all have made my life incredibly easy, taking care of me. Faith for what is ahead is given moment by moment, but has great reward also, of an intangible nature.

Liz, from your blog, I feel strongly that you will be okay. I laugh very easily, treasure what I have more than ever and believe you probably will react similarly.
 
Liz, I am a little behind on my forum thread reading so I just found this one (again). I am not familiar with the Nook but From what I read it is a book reader similar to a Kindle. I doubt that there are apps for it to use as a speech device like there are for the iPhone/iPod/iPad. The Apple devices are really mini computers and are so much more than a book reader (and for a bunch of reasons they aren't even the best book reader)
 
Hello,
Could you please tell me what APP you got for your iPad? My husband is using tap to talk or something like that, but it seems to be more for kids. Thanks for your help.
 
Nancy, there are a couple of iPhone/iPod/iPad apps including the very cheap SpeakIt and the much more expensive Proloquo2Go. I use Proloquo2Go every day on my iPod touch and it also can be used on the iPad. It allows for direct input via the key pad and will allow for the programming of phrases and also allows for pronunciation programming so that words come out right.
Just do a search in the App Store and you can find both these programs.
 
Thank you BarryG. I think that was the one our ALS Clinic speech therapist was talking about..but haven't been able to get in touch with her.
 
Sleep, sleep, sleep....do what you need to do to keep a regular sleep pattern and take naps. This is just so important to how you feel and how you can function during your day.
 
Jerry is right. Sleep and not trying to maintain a standard for daily achievement is worth a whole lot. In other words, rest when you're tired and don't push yourself. It makes symptoms heighten when I'm tired. Taking care of whatever your disease requires (the speech devices for instance) have to be high priority. Loved ones are also high on my list, but the hard thing was allowing myself to quit trying to do more than was good.
 
Lizzie, your blog is wonderful! I hope you plan to continue. I would like to share it with my mom, who was diagnosed Jan 13 with bulbar ALS, but not just yet. It seems the doctor has not yet told her what to expect, and I don't think she's done any searching of the Internet. I'm struggling with the decision to leave it to the doctor or tell her myself and encourage her to join this forum for support.

Julie
 
Listen to those who advise you to get lots of sleep, including naps. Also don't push yourself to do what you always did - then, don't beat yourself up for not being able to do it! I didn't believe them until I found myself on a rapid decline and needed to rest more to stop the fast downhill slide I was on. Wish I had believed those who went before and their wise advice.
 
Julie, I'm really sorry about your mom. The first couple of months will be emotionally draining for both of you. My advice? Baby yourself and your mom. Don't do anything you don't want to do. I think this was the best lesson I learned from my diagnosed. I have always been a "yes" person. I've suddenly learned that the word "no" is very freeing. I'm praying for you and your mom as I pray for all PALS and CALS. hugs! liz
 
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