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greentara

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Hi All,

Thanks for reading in advance. My mother is newly diagnosed with ALS and she is deteriorating very quickly. I was hoping there was someone who may be able to offer advice on a particular problem that is developing.

5 months after my moms diagnosis, she is unable to talk, walk and now eating is getting very difficult. through all this she has been unbelievable strong. over the months her throat has been bothering her and it is beginning to get bad. she explains it as the inability to clear her throat or cough. I am assuming the muscles in her throat, as they atrophy, are just not working the way one would need them to, to function.

This is causing her an ENORMOUS amount of grief and pain.

It is extremely difficult to witness this and be so helpless.

I was hoping someone had some advice, insight, suggestions....anything that might help this problem and give her some relief...

Has anyone with ALs or their caregivers experienced these throat problems?

Thanks a bunch!

Tara
 

FSHolbrook

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I have a similar problem, I will be going to an ALS Clinic next week and hopefully get an answer, I will let you know what I find out. I would strongly urge you to contact her neurologist because he/she may have an answer.
 

affected

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Welcome Tara, so sorry for your mothers diagnosis.

My husband is bulbar onset, which means it started in his mouth and throat.

The swallowing issues are very important to address to prevent her getting food or fluids in her lungs which can then cause pneumonia.

A speech pathologist is the best person to work with for his part of your moms symptoms. A feeding tube is usually offered which they insert directly into the stomach so that the risk of choking or aspirating is greatly reduced. My husband had one of these put in about a month ago and I can get lots of water into him now, and it's very easy to use.

Please talk to your doctor about these issues so that you can get help. Do you have a clinic appointment yet? I think they will have speech pathologists there, but if you and your mom are distressed now I would want to get this looked at and some strategies in place for helping to deal with it.

Again I'm so sorry for her diagnosis, I know how tough this is
 

Katie C

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Hi Tara. What you are describing are symptoms that many PALS experience, and those with bulbar onset (which it sounds like your mother has, and is what my husband had) START with those symptoms. Talk to your mom early (like now) about a peg tube. I wish Glen had been willing, but other actions caused by his dementia meant he probably wouldn't have been compliant anyway.

I agree.. a speech pathologist can be your best friend. He or she will help with ideas on thickening liquids, pureeing foods, types of speech replacement devices available, etc. Ask for that appointment asap. In the meantime, thick liquids are easier to swallow. There is a product called thickit that you can get at most drug stores to thicken anything from water to beer (yes, really) to anything up to a pudding consistency. As water becomes more of an issue, be aware of dehydration. Also, invest in a good blender... I killed 3 less expensive ones before buying a more expensive heavy duty one that now makes a mean margarita!

Another thing to be aware of is there seems to be a connection between bulbar onset and cognitive issues, so if you think you're seeing weird personality changes, believe yourself! Keep a notebook of things you notice, when they happen, time of day, what may have triggered a certain behavior. Bring the notebook when you go to clinic or see your neuro, or better yet e-mail the info and questions ahead of time so the doctor is prepared to discuss the issues.

Hang in there!
 

greentara

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Hi Katie and Tille,

Thank you so much for your replies and input! My mom has two wonderful speech therapists....she is in a nursing home. Can't say much about the nursing home itself but the staff of therapists....speech, physical etc..are just wonderful! We did finally discuss a feeding tube with the speech therapists and because my mothers disease has progressed so rapidly, I think at this point the feeding tube would act as something that would prolong her pain instead of increasing her quality of life. What I have seen, on this forum and others, is that every single persons experience of ALS is so different. The rate of progression, symptoms, pain etc...I am finding that the only thing for us(my mother and I) to do is take one day at a time and make decesions one at a time as they come up. With that, I think for my mom the feeding tube is probably not going to be a choice she makes and I completely understand why she wouldn't want to prolong her sufferinging.

Thanks Katie! I wasn't aware that the ALS affected, or could potentially effect, cognition....yet, another example of how the disease is different for everyone. So far, the only "weird" thing that has happened is my mom laughs uncontrollably at times...she communicates that it isn't her laugh (her typical laugh) and it's not, and thank god it isn't an unpleasant experience for either of us, in fact, we laugh quite a bit together as she gets me laghing at the same time! it' kind of cute really!

As far as her throat, she has a suction machine and it helps a little but unfortunately, when the episodes start the only thing she can do at this point is just wait for it to pass. It gets scary for her and me as there is a fear of choking.....

Thanks again for the encouragement!

Tara
 

affected

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Hi Tara,
every person is so different with this disease as you noted and choices such as a peg are very personal ones and there are no right or wrong decisions.

I think the most important thing is that everything is well explained to both you and your mother so that you can make informed choices, including not taking a peg.

The laughter is another symptom and it was one of the early symptoms that I wasn't particularly even aware of because it mostly was happening for my PALS at work. He was always someone to joke around a lot anyway, but like you note it's not quite their real laugh, he would go into such hysterics he would have to just walk outside for a bit (lucky he was the boss)

My PALS still refuses to take in enough calories even with his peg and so he continues to lose weight, some days I wonder why we went through all the stress of having it inserted.

One day at a time is all I can manage and sometimes one day is too much ;)
 

Janie H

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I have similar issues, cough assist helps some, I find myself laughing uncontrollably, not a big deal like you said, we laugh together, at least I'm not crying, (haven't cried since my diagnoses). Sometimes I use my nebulizer and it loosens things up, the best thing is not to panic, when I can't cough at all, I rest for a few minutes, move around a little and it comes up, God Bless
 

pearshoot

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AFFECTED what are you using in the peg. can you slip in additional supplements for more calories without his knowledge. whey protein comes to mind
 

Pkmado

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My pals finds some relief with Musinex D. Not lots but some.
 

affected

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@pearshoot

Mostly he is only taking water through the peg, he wants to try and eat even if everything is puree. Some meals he has more trouble than others and will become frustrated and just give up after only a little food. I will offer to either feed him (double whammy of swallowing issues and problems holding a spoon and getting it up to his mouth), or offer a peg feed. I'm afraid that if he has become frustrated he will usually just say 'I don't want anything'.

You are right, I could start trying to slip extra things in, though with water it will be rather obvious, but he wants to make the decisions. Regardless of if I agree with his decisions I try to honour what he wants as he already feels he has so little control.

It's a constant mind battle for me to be honest.
 

Katie C

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Tillie.. don't know if this will help with the eating difficulty but for what it's worth... Glen had a large handled spoon (available at arthritis supply places). He would take a spoonful and brace his arm against the table then lean down to eat it. It worked pretty well for quite a while.
 

pearshoot

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AFFECTED does he like chocolate pudding, if so maybe you can sneak in chocolate whey protein and hybrid createin with carbs, about 300 cals. if so put items in glass jars to hid they are supplements. sneaky yes, but his weight condition will definitely speed progession
 

affected

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@Katie C, thanks for the tip. I will see if I can get him to try something like this, he does have a modified spoon, and he does lean in for each mouthful. He was doing pretty well with this aspect of the eating until the last few weeks, especially after a fall when he ruptured the tendons in the shoulder of his good arm.

@pearshoot, I think we had a win at the doctor today. He pretty pointedly asked him why he won't take in enough calories. He has agreed to try having a commercial peg feed after every meal he takes in by mouth to boost himself up.

I so know that the less he is getting in calories is really affecting his energy, his muscle wastage and his emotions. Hopefully he will stick to doing this, too often he will do something for a day or 2 then just lapse back. Last week when we saw the gastro who put the peg in he told him he has to start drinking a high calorie milkshake every day. He agreed, but not once has he actually been willing to have one ...

It can be hard being a CALS if you can see something that seems obvious and logical but your PALS refuses to see it the same way, and you have to choose to either let them make bad decisions, or take control away.

I think I will get some whey protein powder tomorrow though as maybe if he takes in some good calories for a couple of days now and feels a bit better for it he may agree to this as another boost, thanks for the tip!
 

zoohouse

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Tillie, I am so sorry that it has to be this difficult. I know it must be terrible for them to give up what little control they do have, but it is so hard to sit back and watch the struggle. I am glad my husband doesn't have any swallowing issues, so eats what ever is given. He is so determined to live as long as he can he will do anything I suggest. He drinks what ever smoothie I give him, and I must say I have come up with some I wouldn't drink. His only issue is that he is afraid of getting fat, if you can imagine. He is 6'3" and weighs 225lbs, the most he has in his life, and since he has no abdominal muscles he has a pot belly. Tim had a six pack when we met, and had always been super athletic, so this is very difficult for him. I tell him that extra weight is our insurance policy, and now I don't have to worry so much about my belly.
I think the bulbar issues must be a very difficult thing to deal with, and by the grace of God I hope that we don't have to experience that ever, or for a long time.
 

MaxEidswick

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Hi All,
My mother is newly diagnosed with ALS and she is deteriorating very quickly. I was hoping there was someone who may be able to offer advice on a particular problem that is developing... she explains it as the inability to clear her throat or cough.
Hi, Tara -- this is about where I am today, but still walking. This forum is a great source of info and (much needed) compassion.

I managed to get down some dressing and cranberry sauce on Thanksgiving, but have only managed 500-600 smoothie calories since then. Not swallowing causes me anxiety approaching panic attacks, but there isn't much that helps that I have found yet.

It is hard to come up with an exit strategy. :-(.

let your Mother know that she is not alone (you, too!).

take a look at http://www.alsa.org/assets/pdfs/brochures/alsa_manual5.pdf

kind regards,

Max
 
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