bulbar als

[jmbrown]

my friend was told that overuse of his swollowing and speech will increase the loss of use. I disagree and wonder what any one elses thoughts are on this matter

 

[affected]

Hi jmbrown

what level of swallowing and speech does your friend have now?

 

[Atsugi]

Most people with ALS say your shouldn't "overuse" a muscle, as it will increase progression of the disease.

We all agree that you shouldn't vigorously exercise any muscle.

Maybe that gives some perspective.

 

[jmbrown]

He can swollow and eat still, cant understand his speech at all.

 

[jmbrown]

thanks I appreciate your input. Anyone had any success with acupuncture treatments?

 

[cheerleader]

The problem with acupuncture for my pals was you are left alone in the room with the needles in for 20 minutes (according to how it was explained to my pals!). He was too concerned about that in case of fasciculations, etc. so chose not to.

 

[jmbrown]

Acupuncture can be done in a seated position though and I believe scalp acupuncture might be of help as it works on many neurological diseases such as ms

 

[ECpara]

Jmbrown, I would think that the amount of muscle he is using at this point is minimal, based on you saying you can't understand his speech. I don't think trying to talk will speed the progression, it's only a matter of time that he won't be talking at all. My concern with him eating is more the chance of choking than the possibility of it speeding progression. My husband has bulbar onset ALS. He spoke and ate as long as he possibly could. I was thankful when he gave up speaking, it was SO difficult to understand him and was the source of a lot of frustration. The iPad was so much nicer for both of us. Same with eating, when he finally gave up eating entirely I was so relieved. His choking spells were becoming too numerous. Tell your friend to talk and eat as long as he wants, but to be prepared in advance for the loss of both. I hope he has considered a PEG tube, my husband got his early on and it has been a life saver.

 

[Janie H]

He can swollow and eat still, cant understand his speech at all.

That's me, I have switched to softer food but still eating, I never eat alone, I have a PEG tube and that helps a lot, I know it will be there when I need it and I can take my vitamins with it. I have weakness in my limbs, does he have that?

Welcome,
Janie

 

[gooseberry]

Jmbrown, we are changing food consistencies to help my husband continue eating. He wants to as long as possible. I am supplementing with really high calorie smoothies he drinks with a straw.(thanks Max for the good ideas) H ecan still talk but his voice quality is much more hoarse. The slp says this is spacticiy of the throat and vocal cord muscles.

Janie, my husband is developing a lot of atrophy and weakness in all limbs. Not sure how long it will be before he isnt walking at all. He is thinking Thanksgiving.

 

[MaxEidswick]

> He is thinking Thanksgiving

then let's hope for Christmas!