Swallowing

[happygardener]

Forgive me if I seem uninformed but I can't find an answer anywhere to my question.my husband has ALS .his speech is pretty bad now,he experiences aspiration and occasional chocking..his neck and throat are twitching uncontrollably.he has not been diagnosed with bulbar als,but could this cut off air supply or ability to swallow saliva?he is not drooling but does have phlegm.I am so scared that something will suddenly happen that I'm not prepared for.we are due for an appointment at the ALS clinic..just waiting for a call

 

[Miss]

If your husband is having trouble swallowing, you need to bump up your appointment with the ALS Clinic. Does your husband already have a PEG? If not, you need to start looking into getting that ASAP. The problem is the possibility of aspiration right now, probably not with breathing. If he is having problems with phlegm, you need to get a suction machine, too. I know it is scary, but these things will help tremendously.

 

[happygardener]

We discussed the peg...I don't know if he will do it..he can barely walk and talk..but says he is improving and doesn't want help..he hates the clinic..cries for days after an appt.

 

[cervus]

If he's having trouble swallowing, he is at high risk of aspirating and that's dangerous. Discuss the PEG with him right away. There are ways he can posture himself to help with the swallowing for now. And get an appointment with the ALS Clinic as soon as possible. Clinics are tiring for PALS and CALS and can drain everybody but they're so helpful and will get you on the right track with all your medical needs. Take care of yourselves. Yasmin

 

[Toto's Dorothy]

Happy,
I don't have the saliva issues yet, but it worries me that you are waiting for a phone call. If it were me, I would be on the phone tomorrow morning, if not to the clinic then some other doctor. You already said he has problems with aspirating.

Please keep us informed and I pray everything works out for the 2 of you.

Toto

 

[panguinjen]

Happy,

Rog got his g-tube at the end of March because he was having so many problems swallowing and choking; couldn't get food down, saliva ran constantly and he wouldn't eat much if I wasn't home. I understand your concern and your husband's not wanting the tube. Please don't wait for them to call you....aspirating could have serious consequences; have him pull his chin down when he eats...that forces the eppiglotis(sp) to cover his trachea so food doesn't go into his lungs. Get some nosey cups for drinking liquids. Get the suction machine. Clinic appointments always leave me exhausted and overwhelmed, they leave Rog very tired....I'm sorry, this is hard!

Jen

 

[Toto's Dorothy]

Happy,

Here's another thought, he may need an anti-depressant. And I am thoroughly exhausted after a clinic appointment, too. They are exhausting physically as well as mebtally. Again, I wouldn't wait.

Toto

 

[momap53]

Happy, contact your clinic about this problem.they can make arrangements to get you guys in sooner if need be or even order equipment. Make sure to get e-mail contact information and ask the nurse how best to handle things that come up in between visits.
Best of luck, sweetie.

 

[Poet Chistopher Robin]

I've much the same problem as your husband, I've had some very close calls too, the mentioned suction machine sounds a good idea, hope you both get through this part of the disease

 

[Miss]

If you can get the clinic to prescribe amitiptyline, it is an anti depressant, too.

 

[Magpuff]

What is a "nosey cup"? Does it work better than a straw?

 

[momap53]

It's a cup with one side scooped out for the nose. Makes for easier sipping.

 

[panguinjen]

Amatryptaline needs to be taken with a stool softener!

Jen

 

[happygardener]

I have thee amatrytaline...he took one last nov and wont take any more..I am dealing with a very stubborn man,,love him dearly but he is having a super hard time having me take over...he is so frustrated..he has always been super busy,super acive,,he tell me that his mind tells him to work hard ..keep going but his body wont let him..i t just breaks my heart.i suggested seing a therapist to help him cope but he wont...i fear this is going to be such a long hard road ....

 

[happygardener]

does this pass...until the nest se of symptoms are does this just get worse/