Bulbar question

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Sunvista

Active member
Joined
Sep 28, 2014
Messages
55
Reason
PALS
Diagnosis
09/2014
Country
US
State
Virginia
City
Virginia Beach
In the short time I've subscribed here the one thing I've learned is that no two ALS cases are alike. Here is a question anyway. Do Bulbar victims (pick one) always/sometimes/rarely/never or eventually graduate to muscular atrophy of the limbs? I might consider PEG tubes and BiPaps and such but throw in total immobility and I'm really unwilling to go the distance.
 
Yes........as you progress your perspectives will change and evolve. ALS manifests in many different ways individually. Yet symptoms are so similar, and the end result is the same.
 
Yes the limb atrophy is happening for my husband and he is bulbar onset.
 
PEG and bedtime bipap are my lifelines. Maybe Riluzole, too. I am just finishing a feeding while typing this. They will extend your productive days. I can't rake the lawn, but I still go out to get the mail and pay the bills. I don't fix the cars anymore, but I guide the local handyman who does it for me. I still provide for wifey as my incremental income is greater than my expenses.

You have every reason to prolong your life, Sunny.
 
Sunvista, this early time after diagnosis is so awful as you try to get your head around wtf has been diagnosed and what is going to happen.

As others said, yes bulbar onset means it starts in to tongue area. But it will progress through the body. This is where everyone is so different - which parts it will progress to and how quickly.

Some choose the peg and some don't, it's a very personal choice with no right or wrong. We will support you whatever choice you end up making. Just now however you are probably a bit overwhelmed. If you are still swallowing ok and can get plenty of calories and fluids in then let yourself just get accustomed to the whole of what is happening and you can choose about peg and bipap a little later.

Smoothies that have lots of protein and calories can be a great way to get what you need into you without much effort.

At the end of the day, it's the effect on the breathing muscles that becomes deadly. This is not always the last part of the body affected. So there are PALS that are walking right up to the end, or still have full use of their arms, or have some use of limbs. It is not a matter of every PALS will progress to fully paralysed.

I hope that helps answer your question without scaring you or sugar coating anything.
 
>I've learned is that no two ALS cases are alike. Here is a question anyway. Do Bulbar victims (pick one) always/sometimes/rarely/never or eventually graduate to muscular atrophy of the limbs?

I think your 1st point is right, no way to guess. I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done :)) -- there is one fellow on here today in his 8th year. Me, I'm hoping to make it to one more season, as Michigan has blown it to hell again this year - they are playing worse than I'm talking :-(

>Smoothies that have lots of protein and calories can be a great way to get what you need into you without much effort.


Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going :)

I've lost 4 lbs since I had to give up eating last Feb. -- btw, if you wouldn't mind, have a liverwurst & jack cheese on rye for me when you have a chance (just say "this is for Max" before the first bite)

also remember the rules:

#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax

ALS is about living, not dying!

If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect

fear, anger, bitterness, and a new awareness of life. I have found that being active here on

these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Max
 

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As everyone has said, everyone is different. My husband was diagnosed with bulbar as well (2 years, 2 months ago. After 1 year he was totally on thickened liquids, but was still okay with his limbs. ( other than his golf game was shot!). He lost tons of weight (down to 120 pounds) but refuses a peg tube. His weight has stabilized by being diligent in getting his 5-6 boost plus down each day. A bigger person would need lots more! The arms have gotten worse over the last year, which accompanied by the muscle atrophy and loss of upper body strength throws balance off, so he is very unsteady when he walks. His new pwc should make it safer for him. We are grateful he is still talking, his breathing is good and he can use his arms to a limited degree- everything just takes longer and exhausts him. With this disease you celebrate what you CAN still do and the small things in life have to be appreciated more! There is still lots of living after this diagnosis! Stay positive and count those blessings for as long as you have!
Max, would say sorry Michigan lost but------ you know us Michigan State graduates are celebrating!lol
 
Follow up question - Living on the Chesapeake Bay I have always been into water activities. Not yachting and such but wind surfing, beach catamaran sailing, jetskiing etc. The kinds of activities where you spend at least some time getting wet. Is this over for me? Do PEG tubes have a cork in them or something? I just put my Hobiecat up for the winter but I'm thinking now it may be up for good. :confused: A year from now it doesn't sound like I'll have the energy for anything but TV.
 
I searched ALS ABC on YouTube and nothing came up.
 
My husband was told that special dressing could be applied so.he could swim in a pool.but it would be better to just not get it wet. The peg is put in an opening to your stomach which is always there...stuff oozes out from your gut a little bit afterwards each day so you dont want to get anything foreign like dirt in the opening. The tube itself has either a mediport or valve closure end bu tth ehole the peg is in isnt sealed.
 
A PEG doc told me I could go snorkeling; no problem.
 
It may be, graybeard, that you would be wearing a dressing over it...kind of like what is over an IV
 
Fight to not give up the things you enjoy and are part of you. You will probably have to modify things to your abilities....just never give up on what you love.
For me it was turning my Harley Davidson into a trike, because of balance and spasticity in my legs. I can't ride it 500 miles a day, like back in the healthy days. But I do make it a priority one or two days a week.....it is like therapy for me to ride.
If you can still do light cardio and work out a bit, do things enhance the physicality of your sport hobbies.
 
Once the stoma has healed over, and a button type is best, you can do anything like swimming or even snorkelling.

They put them in young children who go on and live very active lives!

The peg won't stop you ...
 
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