Hello, everyone

[Sylvia450]

I was diagnosed on 9/11/07 (yes, that day!) as probably having bulbar-onset ALS. Two months later the diagnosis was confirmed. I have been taking Rilutek since then.

So far I have no limb involvement and my respiration is normal. My speech is now almost unintelligable and I just bought a voice computer. My chewing and swallowing is more difficult, but I love food and have gained 15 pounds since being diagnosed.

So far i am not depressed or anxious (things I have suffered from in the past), but I would like to know more. My doctor is very good and I go to an ALS clinic in the state.

I don't know if I have PBP (my doctor says 'wait and see' basically).

I'd be glad to chat with other people in the same boat, or their family members. I am not on the computer every day, but I do check it several times a week.

Sylvia

 

[BethU]

Hi, Sylvia ... welcome to the forum. I'm a new member, too, so don't know a whole lot about this disease, but it sounds like you and I are in the same boat. My symptoms started with slurred speech and blurred vision in March, 2006, when I came out of heart surgery. Almost a year later, I started having trouble swallowing liquids. Was diagnosed in January with Myasthenia Gravis, then, 4 weeks ago, that was changed to ALS.

My symptoms are still all bulbar, although I do feel some tiny random twitches in my legs and torso at night occasionally. Like you, my speech is almost completely kaput, and I'm trying to learn to use a little typing/speech gizmo. (But the gizmo's speech is sometimes as bad as mine! I have to type some things in phonetically to get it to come out right.)

I lost 25 pounds in the two years from the start of symptoms up to January (mainly from a lack of appetite), but I have held my weight steady since then. When they diagnosed ALS on 5/5, I started adding supplements (protein powder, Ensure, etc.), as I didn't know what else to do and it seemed like a good idea ... but I immediately started gaining weight, so I went back to my normal diet, which includes smoothies with lots of fresh fruit.

Have NO IDEA what's going to happen next, or when this will spread, but I am so grateful that I can still get around and drive (when my eyesight doesn't go all blurry, as it does when I'm tired or stressed). E-mail is a blessing. I'd be really up the creek without it as far as daily life goes. Talking on the phone is the worst problem. In person, I can gurgle out a few syllables, and write things out and use gestures to communicate, but on the phone ... forget it! Swallowing is still a problem, but I am careful with what I put in my mouth and how I swallow.

Just had lung function tests, and my lungs are "very good," the pulmonologist said ... tests showed capacities above normal ... up to 150% of normal for my age/weight ... so I'll just take it day by day. Am trying to get into a university neuromuscular center for treatment, and am hoping they prescribe Rilutek.

Glad you're with us on the forum. Take care and hang in there!
Beth

 

[Maureen]

I am new too.

:-D This is the first time I have posted. I have been reading for some time now and feel so informed and inspired. My symptoms are very similar to yours. It all started 3 years ago after surgery on a peritonsil growth. They say there is no connection to the ALS. Well anyway over the past 3 months my speech has gotten more difficult. I have difficulty projecting and am not comfortable speaking at times. Seems all my symptoms are bulbar and progressing very slowly. I think all the time what and when is next.The more I read and talk the more I have learned how different this ALS is for each of us. I have spent the past year reading A LOT. My favorite book is ERIC IS WINNING. I have learned a lot from this book and have taken many steps to I feel help me as I deal with ALS. Don't know if you have read it or if you would like it but I sure can recommend it.
Good luck to you and keep posting we can all support one another and share.
God bless! Maureen

 

[Sylvia450]

Beth and Maureen

Thanks for the welcome, Beth and Maureen!

Beth, I'm surprised they haven't prescribed Rilutek for you before now. I have read on the web about studies that show it really does help slow the progression for people with bulbar-onset, especially women (for some reason). I also take CoQ-10, Vitamin E and Beta-carotene. These are vitamins suggested by my ALS clinic as possibly helping. I have no way of knowing if they really do.

I too feel lucky that I can still drive and get around. I volunteer at the local library (I retired before I got ALS) and love it.

I swallow pills with thickened liquids from Walgreen. Like I said I love to eat and I find that the easiest foods to eat are greasy foods, like french fries, fried anything, meats and potatos with gravy, and pasta with sauce. My doctor said 2 months ago I might need a feeding tube in 3 to 6 months, but so far I am still exceeding my normal weight (from 125 lbs. to 140 lbs.) Also I am having a little problem with excess saliva, but started taking medication for that.

I can't talk on the phone anymore and have to get my husband to do all my calling for me. Of course, e-mail really helps.

Sylvia

 

[fiddleplayer51]

Welcome Sylvia, Maureen, Beth,
Lots of bulbar onset! My husband also has bulbar onset ALS and was diagnosed in March of this year. His speech was very nasal in December and became slurred in January/February. Just in the past couple of weeks his speech has gotten quite a bit worse. He still manages to swallow mushy foods like over-cooked grains and vegetables, but thin liquids are a problem.
We are awaiting a call from the ALS clinic in Charlottesville VA to tell us the date of his PEG tube insertion. He was evaluated for it this past Thursday. His BiPAP was set up on Friday.
You'll find much support and help here. Ask any questions you like. Someone is sure to have some helpful suggestions or answers.
Take one day at a time and keep us posted.
All the best,
Jane