Losing speech

[Labinma]

My PALS diagnosed in June 2014 is fighting the beast as they say. He still walks, uses arms and hands in limited capacity. He seems to have the basic bulbar onset as well, which means his speech is changing. This has been going on for probably six months rather noticeably. Lately getting worse. He still goes to work and drives a car as said he is basically fully functional on his own. My concern? Could his speech give out on him before anything else? If so, what has happened to others if this course of events happened to anyone else. To refresh, my PALS will not take any assistance of any kind. Also his weight is dwindling. He is very lean now. Thank you.

 

[Manhattanite]

In my PALS' case, his speech was the first thing to go completely. He was still going to work once a week, taking the subway, feeding himself. This happened in September 2016. He stopped eating completely by mouth in January 2017. So to answer your question: yes it can happen that his speech gives out on him before anything else. He continued to work once a week until the end of January 2017, so he still had some months of independence after he lost his voice.

Two big caveats here: he had a PEG put in February 2016 and he was getting most of his calories by the PEG by that point. Another caveat is that each case is different, so I by no means mean to predict what will happen to your husband.

When my PALS was diagnosed I found it horrific that he would lose his ability to speak and it filled me with immense despair. And yet because it happened gradually I came to accept it. Also if he had not opted for the PEG he would not be here anymore. He says he wants to die because he has nothing to look forward to, but I think he still gets a little enjoyment out of life. I am not sure how much longer that will continue.

 

[lgelb]

If his onset was bulbar, it's certainly possible. But since he has hand function, he can for now easily use an iOS or Android device with a text-to-speech application, or if the problem is more volume than clarity, a personal amplifier.

To help maintain his weight, assuming throwing in extra fat/calories is not construed as "assistance," see some good recent threads on cream, butter, etc.

Best,
Laurie

 

[ckck]

I lost my speech completely before I lost the ability to eat. I use several applications for text to speech, still run errands and still drive as I am as yet fully mobile. There are threads on applications, I use predictable. If weight loss has started, it becomes difficult to reverse without a PEG. I waited much to long and lost way too much weight.

Ken

 

[soonerwife]

My PALS has bulbar onset as well. Diagnosed Oct '15, slurred speech started July '14. He hasn't spoken a word in several months. He had the feeding tube put in Sept '16. He gets all his nutrition through the tube. Had he not gotten the tube, he most likely wouldn't be here. He agreed to his when I noticed he had lost 20 pounds in 10 weeks. Eating was too much of a chore. It took hours to eat a piece of pizza.

He can used text to speech apps which he really doesn't. He prefers to write things on a boogie board it paper. We just received the Tobii Dynovox that will work with eye gaze if and when his hands quit working completely.

He is still walking barely.

Everyone is different and it seems no case is the same but you can lose your abilities to speak and eat and still be mobile.

 

[Lkaibel]

It must be very difficult to lose a loved one's voice. I am glad Brian is not as of yet speech affected.

 

[Labinma]

Hi all,
Thank you so much for all the responses. My PALS so far has refused the feeding tube. He has been warned if he loses too much weight he could hit the "failure to thrive" level of weight.

As I walked out the door today he had a protein shake in his hand. I had given him the protein powder over six months ago and he didn't take me up on it. Now I see it. I understand this is such an individual journey for all those with PALS. I cant relate enough to all of you as CALS trying to sit back and allow them to take on changes the way they want. I am a doer, a planner and a take action before needed person. I am on the opposite end of the spectrum as far as what how I would be handling things. But I finally have gotten in a place that I can just let go and let him handle it. The help of anti depressants helps tremendously. I really cant stress that enough.
Thank you all! Hang in there each and everyone of us.

 

[Firefighter58]

Hi there
Sounds like you and your pals are doing well. i myself can not speak at all, but sometimes that good, i can't talk myself into trouble. I also have a tube and it is the best thing I have done for my treatment of ALS. It is no inconvenience, easily to maintain and I can still eat regularly meals but very slowly .I ear slowly,not because of the tube but because of ALS.
Al

 

[Labinma]

Thank you Al, wish you lived near us. You sound like the kind of guy that could suggest this stuff to my husband and he would listen. I asked him awhile back to consider one of the less invasive feeding tubes (only to be told there is no such thing), but that he could still eat normally and this would only be an alternative to get some extra calories and protein when he wasn't in the mood to eat. It was also turned down by him at his last clinic visit. He definitely has that reluctance to chow down, which was never him. He was always finishing other people's plates, eating full large sub sandwiches, you name it. Now I find half eaten subs in the refrig sometimes and just not seeing the quantity that was his normal eating habits before.

 

[notBrad]

One thing you may tell him is that he can extend the time he is capable of eating by getting a peg early. That's what I did and the extra months I was able to eat were greatly appreciated

 

[Jlynn]

Labinma, Your story sounds a lot like mine. My PALS ( my younger brother) has refused all medical intervention. He wants to go "naturally". Hasn't even taken antidepressants although I did fill a script for it. He started with limb onset and his speech has progressively been affected as in slurred speech and trouble enunciating certain words. I've have asked several times if he has changed his mind on the peg but he always say no. I'm really not sure if he could get one now. He doesn't even see any docs unless I have his PCP (a friend of mine) stop by on a house call. Other than that...nothing. Whether I agree or not I have to respect his choices. It's the only control he has in life right now.

 

[Firefighter58]

Jlynn for your brother to say he wants to go naturally, that's bullpuky if he took care of himself, had a peg so he could get nutrition and wanted to live he could last years maybe decades like my neurologist told me.
Al

 

[affected]

I respectfully disagree that there is any guarantee that doing anything in particular will mean any individual PALS will live for years. Decades is very rare for ALS.

Wanting to live does have an impact for sure, but surely every person has the right to decide what they want to live with?

 

[lgelb]

Al, we do not all have the same definition of "natural." For some people, a feeding tube is not "natural," though it may be for you. The key to presenting PALS with information that can support their own best choice of what is right for them is explaining what the tube/BiPAP/wheelchair is/does, what the benefits and possible drawbacks are. If we impose abstract vocabulary, it makes the conversation more emotional than it needs to be, and can obscure key points.

Best,
Laurie

 

[Firefighter58]

Good morning folks
In the above reply I did not say he would last for years, I said he COULD last for years which is true. As for as me saying decades, that is possible, we have folks here on this site that have lived for decades. I also did not say that there was any guarantee.
My whole attempt here was an to have someone give this person a shake and say you don't have to die. Life is not always hugs and kisses sometimes it is a kick in the pants
And sorry Laurie for imposing abstract vocabulary, I don't know exactly what that means but that is the way I talk and think. If speaking the truth is offensive to some that's truly a shame.

Al