Vital Stim Therapy

[KinzaDAF]

I don't know what others know about Vital Stim therapy, but my dad had a series of these treatments. Not long after, his speech ( which we had to work hard to understand but still *could ) became unintelligible. My family is now wondering whether the treatments might have made Dad worse. For those who have not heard of Vital Stim, it involves electrical stimulation of the swallowing muscles while asking the patient to swallow various things. The idea is to strengthen the muscles, and it *has been shown to be helpful in various conditions that cause dysphagia. The speech therapist Dad had been seeing recommended the treatments. BUT...now that I have ( I THINK. ) a better understanding of how things work with ALS, I *am wondering whether the treatments might have indeed made Dad worse. ( USING the muscles DOESN'T build them UP, it wears them OUT. ) Of course, if they *did make things worse ( Now we can't understand a word Dad says. ), there's nothing we can do about it now. Maybe though, I could let the speech therapists know not to use this on other ALS patients. ( Dad was dignosed with bulbar palsy at the time, but I think this is a "fine point". )

Debbie

 

[BethU]

Debbie ... You may be right about the therapy making things worse. The thing we need to avoid with ALS is stressing any affected muscles. You might want to warn the ST about using this on other PALS.

However ... ALS is a progressive disease, and your Dad's speech would have gotten worse anyway. It's probably impossible to determine if the therapy speeded things up or not. ... but CLEARLY it didn't help!

My ST had me doing repetitive speech exercises ... reading aloud words and sounds that gave me difficulty .... over and over daily. I would be so exhausted at the end of each practice, I couldn't talk at all. STs are great for swallowing problems and for other diseases, but for bulbar ALS, they really can't help. I was seeing her before I was diagnosed with ALS, so she didn't know what she was dealing with.

 

[KinzaDAF]

Maybe the speech therapist didn't realize what she was dealing with ( a PALS ) but *still...sigh. Of course Dad's *speech wasn't the *only thing that got worse. ( He now has great difficulty swallowing and lots of things come back up. ) You are right that Dad would have gotten worse eventually anyway, but maybe we'd have been able to communicate with him a bit longer and he'd have been able to swallow a bit longer, which would have been nice. ( Dad has an appointment on Thursday to see about getting a PEG. )

Debbie

 

[mare]

It's not helpful to do the "what if's". Don't look back; just deal with what is now.
Make plans for what will help- the PEG is certainly a good plan!

 

[tdamess]

funny this came up as you know we wreck our brain's out trying to think of something that will help.... my husband thought if it is an electrical system that is messing up the nuron's and that kill's off the mucles ... was wondering if shock therapy might actually knock our electrical system back into place may sound silly but it kinda of makes sence to me ...if that is the way it work's

 

[joelc]

It is dangerous to do any of what you all are talking about. With ALS the muscles cannot be built up. If you try you will only damage them and make things worse. Please be careful. Don't experiment.

 

[Zaphoon]

Joel,

Does this mean I have to disconnect myself from my twin twelve volt batteries? I've been kind of enjoying them...

 

[KinzaDAF]

Joel,

Do you think the Vital Stim treatments made my dad get worse ( faster )? It was the Speech Therapist who recommended it, not something we just decided on our own to try! Mare, you are right of course. There is nothing Dad can do now but move forward. I just wondered what everyone thought of this therapy ( and whether anyone has heard of it or tried it ) and whether it likely negatively affected things or not. If it did, the speech therapists out there should be made aware that this is not something that will work in ALS patients, saving other people from worsening symptoms due to treatments.

Debbie

 

[joelc]

It is impossible to say whether it was detrimental to him. From my experience I would not do it.

As far as it being recommended by a medical person that reveals a real pet peeve of mine! ALS is not property understood by the vast majority of the medical community. I am constantly correcting them and educating them. The response I continually get is "I didn't know that".

Trying to bring ALS awareness and understanding to them is what keeps me alive and fighting.

 

[KinzaDAF]

I feel tremendous guilt about not understanding enough about how things work with ALS to have questioned the speech therapist's recommendation. You'd *think medical professionals would know what they're *doing! Guess not. Grrr! The ALS would have progressed eventually but maybe because of getting the therapy he got a lot worse a lot faster. But as Mare says, there is no point to stewing about it now. I was just wondering whether my suspicions about the treatments were valid. Seems they are. I hope I can get word to the speech therapists Dad saw, and who treated him, and share a little vital info about ALS so they won't make the same mistake again!

Debbie

 

[Zaphoon]

I've unplugged myself from my twin twelve volt towers.

 

[tdamess]

lol zaphoon ...and joelc we would never try it it was just a thought my hubby thought of but, it did make me think about it but, as i have not learned all thier is to learn .all i know is muscle are controlled by nuron's but, not sure what control's them thought it was the electrical systems for nerves but a treatment here talk's about a new trial med stopping some ( i will call it a chemical ) in brain that either stop's production or makes more of it towards the nuron's .... you see i know thier is nothing i can do to find the cure but, my heart and mind keep looking it's like i trust the medical and science people but, yet" i dont ....and thier is a drive in me that's keep's looking and thinking and trying to be full of hope that i can think of something no one else did even thou i know it's silly ...everything probley has been thought of... so don't worry i would talk to a doctor about thing's first.

 

[joelc]

Zaph, let us know how that goes!

We are all thinking and hoping we can stumble across something that will help. Don't stop the creative juices from flowing.

 

[GlenBrittle]

I've unplugged myself from my twin twelve volt towers.

and did these twin twelve volt towers undulate or just buzzzzzzzzzzz ?

 

[Zaphoon]

Glen, the twin twelve volt towers caused an undulating buzz. I"M ALIVE! I"M ALIVE! (and undulating with a buzz!)