New Here and Needing Help!

[Cyndi G]

My partner, the love of my life, was just diagnosed with Bulbar onset ALS. His speech is almost gone and swallowing and mucus are a big problem. We are trying to find answers, muddling thru as best we can but so much of what I'm seeing here is for the problems of muscle weakenss and paralasys which he isn't experiencing yet. We don't know what to expect. Will meet with a new neurologist tomorrow to discuss PEG and rilutek....don't even know what else to ask about yet. I would love to hear from others who are dealing with this particular form of ALS!

 

[Atsugi]

Good for you being proactive before the meeting.

Search the general forum for mucus. It's a common subject.

 

[GregK]

Also at the top of the General forum are a group of 'sticky' topics. Very helpful.

 

[Nuts]

Yes, as Greg says, the stickies are FULL of information gathered by the folks here. The search function is always very helpful

 

[gooseberry]

People use a variety of things to cut the mucus and slow the production. Papaya enzymes, fruit of various types, alka seltzer,mucinex, prescription meds....

Since mucus is an issue, I would ask about seeing a pulmonologist who is used to treating als. It is a restrictive lung disease and most pulmos are used to treating obstructive disease.

 

[Loverly]

You're going to need some machines. A suction will help get that mucus out. It's a simple one that the dr office can prescribe. You need to ask about feeding tubes and when will be the right time to implant. You might need a bi-pap machine, which helps control inhaling and exhaling. Bulbar onset also affects the diaphragm sooner than other types. It's important to get the exhaled co2 out of the body.

Last, I would get in the cue for an assisting speech device. It takes forever to get the paper work done. I am afraid Kathy will be unable to use hers by the time it arrives.

Good luck. I'm sorry you're here

 

[KatB]

Cindi, I was diagnosed with Bulbar in February 2015, my symptoms started January 2014. I am so sorry you having to experience this. I am happy to help in anyway I can. This is the best place to be for support, knowledge & love.
Kat

 

[Janie H]

I have bulbar, trilogy, cough assist and suction is what I use, get the PEG asap,you may not need it now but best to get it before you need it.

Janie

 

[cheerleader]

Cyndi, weight loss is a major problem with bulbar. The sooner he gets the peg, the easier it is to maintain his weight. Keeping weight on prolongs life so........smoothies, Boost Plus, ice cream, etc. are all things easier to consume with swallowing problems. Although eating healthy is good, he is given a free pass and encouraged now to enjoy lots of butter, etc. that are calorie laden. Good luck. Donna

 

[affected]

Hi Cyndi,
my husband was also bulbar onset.

How did the discussions go about getting the PEG? It's a snap to use and makes both your lives so much easier.

 

[aryakangler]

Sorry your here Cyndi, but you've come to the right place. My mother has bulbar onset ALS and has lost abilities very quickly. Medication with applesauce was helpful for a time, if you haven't already tried that. She chose not to use a PEG so unfortunately I have no experience with that. For her, Rilutek side effects were to severe and she had to stop taking it. Hopefully your husband won't have the same issue. Stay strong! and from my experience I would suggest you venting and sharing as much as your comfortable with as you go through this. I kept everything bottled up for sometime, and using this platform has helped more than I ever imagined.

 

[Cyndi G]

We won't be having the PEG discussions until after the next round of appointments....next with speech therapy and nutritionist, then back to the neuro and on to the gastro. He will have the PEG placed when it is time but is having less problems as we've figured out how to prepare food and have started with alka seltzer. Way less choking now.

It's frightening because I don't know what to expect...sounds like nobody does....with the progression. With bulbar onset he hasn't lost any noticeable strength in arms or legs and is still able to work and do whatever he likes....except talk. Thank goodness for all the great apps out there now.

I am trying to settle myself down and enjoy the days without worrying so much but it's easier said than done.

 

[dhp59]

Hi Cyndi,
My husband has bulbar type and we are on our 13th year. His speech was the very first recognizable symptom of ALS. He woke up one morning with slurred speech. By year two I could not understand him anymore. I must tell you though, he started to spell words and letters with using his head and we have developed our own language. I can still read his letters and it has been 13 years. I am thankful we worked together at developing this way of communication. My two sons could also figure it out for many years. He prefers to use it because then no one can say what he is thinking by reading over his shoulder... It has only been in the past six months that I am really struggling with figuring out the letters he spells. There are lots of communication equipment out there that will speak for him. Peter speaks to me through his PC, sends emails, text, does all our banking etc. and he lost all mobility by year 3. He operates it with an impulse switch on his temple. Best advise is stay ahead of the progression. Educate yourself on what equipment is out there ( speech pathologist should be able to guide you) and get it in the early stage. Equipment can take a while to get with insurance and medicare. We were given the 3-5 year life expectancy and we are in year 13. Yes, Peter is trach and vented (4th year). I never knew what to expect either. I just joined this site and hope to help if I can and also learn as much as I can about what to expect when a patient is totally shut-in so that I can be prepared for my next steps. Post your fears and questions, so many great people in this group.