Recent content by KatB

I am so sorry for your loss,prayers & Blessings for all!

I am so sorry for your loss, prayers for all!

I have heard there are remodel grants available through ALS Assoc.. Please check all available resources, especially if funds are tight. This disease only gets more expensive as we go. I hadn't planned on loosing income but one yr in, just after diagnosis I realized I could no longer do my job...

I started this last September, especially when turning over in bed. My CALS thought I was hurting. I have some low & high pitched tones. It is hard to control. You r not alone in this.

V, we moved to Florida 9 years ago, from Ohio. Our siblings, kids, grands & great-grand kids r all North. We have new friends here but with ALS in the mix now for 2 years, it's very time consuming to contact everyone to update them on changes. I have been using Caring Bridge to post updates...

Nudexta has helped me quite a bit. I was not myself, of course I was newly diagnosed with Blulbar Palsy, dealing with the news and my family, But I would cry at commercials and truly unnecessary nothings to cry about. I was almost a constant blubbering mess. I realized one day this was not who I...

You are welcome! my detox was a real trip, I have been slowly detoxing for over a year now, off & on, testing the waters so to speak. Learning it can't be tested, as soon as i thought it was ok to have a little sugar or white flour, i realized i have to start all over again. I started learning...

Welcome, Curtis! I have a grandson in Va. Who finished the last ride on The Geo Wasington. His first year will be complete in May. I'm so proud of him for his service and I thank you for your service!

Bookay, I too have PBP, I started with slurring as well. But after looking back 4 months prior to the slurring starting, being so exhausted and out of breath when exerting myself, there were other signs for me I didn't see as a symptom of what was to follow. My slurring started in Jan 0f 2014...

When I was at Jacksonville, Mayo for my second opinion, I must have been too distraught or caught up in hearing only what I could handle at the moment. I vaguely recall them saying something about donating (I did donate blood for research on that day) and If you had not brought this up I would...

Awesome link, Nikki. Thanks KatB

Thinking of you, Got off I75 @ the Wesley Chaple exit & u popped in my thoughts. Hope you are well. I had my evaluation for my speech generator at Abilities First in Lutz. What a great machine, I'm sure I will feel like I have much more independence! Kat

Vince, I use the iPad too. I have verbally Plus, but I like AAC Flip Writer better. Have you tried it? There is a free one you can get to try first. Lock your screen so it won't turn on you. I love it!

With Bulbar onset, my experience was a bit different. First I had a cleaning done, head and neck positioning wasn't fun, I just had to tolerate it, then tilting me back Swallowing was uncontrollable and when I swallow, my mouth would close, almost in a spasm. Because I can't speak I really felt...

Cindi, I was diagnosed with Bulbar in February 2015, my symptoms started January 2014. I am so sorry you having to experience this. I am happy to help in anyway I can. This is the best place to be for support, knowledge & love. Kat