Anyone else diagnosed with Bulbar Onset ALS?

Rolo1973

New member
Forum Supporter
Joined
Jun 19, 2022
Messages
6
Reason
PALS
Diagnosis
08/2021
Country
US
State
AZ
City
Tucson
The most hardest thing is missing FOOD! Oh gosh! Food was my #1 drug back in the day. With ALS starting in my mouth area, I stopped being able to speak, eat and drink. Feeding tube is giving me life, and I really like shooting carbonated sodas and energy drinks just to burp. I do notice that my limbs are slowing down. Walking requires balance, so I use a walker mostly. Anything past 20 + feet, walker time. A bee really liked me the other day. He was flying towards me, my mind was telling me "move", but my muscles are like "sure, one minute please". He hit my face crawled for a couple seconds then flew off. Maybe he was just saying "Hi!, I will protect you". hahaha
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
847
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Hey Rolo, welcome to the forum! I'm not a PALS, but I totally get how you miss food so bad. Just wanted to say that your post made me laugh. Burping for entertainment and animal voice-overs are my kind of humor.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,735
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Welcome. We definitely have bulbar onset members and more who now have bulbar involvement. Losing speech and eating/ drinkng are among the cruelest aspects I think. i am guessing the burping is mostly so you can taste something again? There is so much more to eating than sustenance. Feeding tubes are great and I am a huge advocate but it isn’t the same - not by a long shot.

be careful not to fall. Use that walker and talk to your clinic about when to order a power chair
 

Rolo1973

New member
Forum Supporter
Joined
Jun 19, 2022
Messages
6
Reason
PALS
Diagnosis
08/2021
Country
US
State
AZ
City
Tucson
Thank you @wishmobbing

Even though i was told I have very little time, I want to enjoy life with what I can do.

@Nikki J - yes, I do have an awesome power chair that the AZ ALS association lent me. I use it to ride up and down my street at nights. Living in AZ, heat is awful so I wait till weather cools down.

I have fallen before, it's quite a job to get yourself up without being able to yell for help. Walker is my girlfriend now. She is growing love for me.
 

Dot Nichols

Member
Joined
Jan 30, 2022
Messages
15
Reason
CALS
Diagnosis
08/2021
Country
US
State
WA
City
Bellingham and Scottsdale
MY PALS CAN EAT AND DRINK NOTHING AND I AGREE THAT THIS IS SO CRUEL! HE SAYS HE DOES NOT CRAVE HIS FAVORITES, BUT I NO LONGER EAT IN FRONT OF HIM, AS IT BREAKS MY HEART TO REALIZE THAT HE CAN'T HAVE WHAT HE USED TO LOVE. WE BOTH MISS OUR EVENING COCKTAIL TIME AND WONDERFUL DINNERS. HOW DO PALS AND CALS MAKE UP FOR THAT HUGE LOSS?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,187
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
A couple of reminders -- 1) this section is intended for PALS to discuss things with each other (the General Discussion section is for both CALS and PALS) and 2) even if you can't eat by mouth, many PALS have their favorite foods blended for the tube, even beer or cocktails, and get the taste of it by burping as Rolo alluded to above.

Besides, real food is much better nutrition than most tube formulas, which are mostly made of corn syrup (exceptions if you want to stay with formula or have it as a backup: Whole Story, Real Food Blends, Liquid Hope, Kate Farms [placed at the end bc of sugar content]). There is no reason not to eat much as before, if you were doing well on your pre-ALS diet, and the importance of good nutrition is only greater in ALS. As for alcohol, if you are used to it in moderation and there are no interactions of concern, there are mental health benefits as well.
 

Swaite1

New member
Joined
Dec 5, 2021
Messages
6
Reason
PALS
Diagnosis
07/2021
Country
US
State
FL
City
Land O Lakes
I was diagnosed almost a year ago with bulbar. I've lost my voice but still can swallow with care. My swallowing is compromised but I've learned that turning my head to the left and looking down, my swallowing is ok. When I go out to eat, I carry a dechoker that I found on Amazon and it works great. Had two choking episodes and these simple devices removed the item stuck in my throat. I intend to keep eating and I don't want a peg tube. When it gets down to that decision, I will plan on entering hospice and let nature takes its course.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
649
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
I have had a tube for about 4 years now and only use it for meds and vitamins twice a day. I can still eat in the normal way but very slowly to avoid choking, it takes me about an hour and a half to eat a meal that used to take me about 15 minutes to eat.
Al
 

Rolo1973

New member
Forum Supporter
Joined
Jun 19, 2022
Messages
6
Reason
PALS
Diagnosis
08/2021
Country
US
State
AZ
City
Tucson
All of you that can still eat, but it's some "hard work", then keep doing it as long as you can! The best thing about real food is taste. Sure I can blend a burrito and shoot it in, but what is the point? I mean I still see peoples reactions to the way things taste. I do taste things others are eating, but It's a finger with a little bit of food to rub on my tongue. As you can see my face, I was close to 400lbs. Now without my #1 drug (food), I am down to 250lbs.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,224
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Rolo, I have a cousin who owns a house in Rio Rico and their "go to" place to get anything is Tucson. I know how hot it gets. Great you have a PWC that works for you. Don't fall!

Nice to meet you.
 

Monarch103

New member
Joined
Jan 13, 2022
Messages
7
Reason
PALS
Diagnosis
04/2020
Country
US
State
NY
City
Mt. Vernon
Hello. I too am bulbar onset. 2020. Now nothing by mouth. I procrastinated and I got the peg tube right before voice and swallowing puréed soup became a real issue. I was steadily losing weight. I still had full use of my arms and legs in May of last year.Use of legs and limited use right arm/hand now. After another pal told me not to give up and reasons I had to do what I needed to do to hang in there. Got my peg in July.2021 I don’t know your situation. Your post reminded me of myself at one time.
 

Rolo1973

New member
Forum Supporter
Joined
Jun 19, 2022
Messages
6
Reason
PALS
Diagnosis
08/2021
Country
US
State
AZ
City
Tucson
Around December of 2020, I noticed my speech was starting to have issues. Also drinking anything, I was coughing as well. Primary doctor sent me to speech therapy but it was getting worse as time was going. By June 2021, it was almost impossible to pronounce words. Still strong in my body and limbs. Went to the first neurologists and he told me it was ALS. Nope! didnt believe him. Went to 3 other ones, and they all concluded the same results. The last one did a sonogram on my limb muscles, and she showed me they were twitching. Then explained to me why it was ALS.

Since then my muscles have shrunk and things physically are quite a job. i also use a bi-pap machine when sleeping, I guess at certain times at night my lungs slow down. Life is surely different.

But I am still here, still have a "special" job (as long as I can type), and live with family in case I need help with anything. I know we all dont have a lot of time left, but I dont want to waste mine. Lets keep fighting!
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,224
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Rolo, you have a great attitude. Using the BiPap will give you more energy during the day. Stay cool and keep taking that PWC for night rides.
 
Top