As of today, there is no known cause, no effective treatment to put PALS in remission and NO CURE. This is what we can do to prolong PALS lives and improve the quality of their lives. Get a feeding tube [we call it a PEG] before it is needed. BiPAP and cough assist to support their respiratory status. Diet HIGH IN FAT calories! Reduce stress. Gentle Range of motion and stretching. Some researchers advocate the drug Rilutek and say that it may prolong life by months. Try to stay 2 steps ahead of the progression by thinking ahead and having services in place. There is a few more things but that is the basics.
Bulbar Onset is when the ALS/MND begins in the mouth-throat area. The first symptom is almost always a slurred speech noticed. My Husband has lost his speech, most of his ability to swallow, has large amounts of drooling, can not kiss-whistle or us a straw and has increased episodes of chin chattering and biting his inner cheeks. That being said, I must also say that no one PALS progresses the same although they all end up the same and that is what is so frustrating to all of us. It sounds like your sweet wife is also Bulbar onset and I would discourage you from using a straw! She needs to do the chin tuck and use a spoon to avoid getting food or fluids in her lungs!
Are you being followed by a medical team that specializes in ALS/MND and have you contacted your MND Society? They will assist you with the services that she will require. Here is a link [I think] where you will be able to make contact for assistance.
MND Scotland | MND Scotland
If I may ask, how old is your wife and the ages of your children? Do you have any family support?
Please go to Barry's link here
https://www.alsforums.com/forum/welcome-new-members-say-hello/9289-keeping-track-who-where.html and he will put a pin in the map for you and your family. You may also want to go here and introduce yourself
https://www.alsforums.com/forum/wel...llo/758-new-introduce-yourself-say-hello.html Your wife is a PALS [Person with ALS] and you are a CALS [Caregiver of ALS] Spend some time in all of the threads and use the search box. There is a wealth of information and support available. We will support you and yours in any way possible. We become a FAMILY that transcends blood lines or the borders of Nations.
Sending you hugs of comfort and courage from the rain soaked Prairie this morning. Kay Marie
PS My children have Grahams, Mcleod, Fleming and many other Scot Irish ancestors! :] We LOVE Celtic music and the bagpipes!
