Gag reflex kicking in

[julialee23]

Hello,
I would like to know what a sudden gag reflex taking pills or eating even small pieces of food means. I don't think it happens all the time (not me, but my loved one) and it is very recent. Her voice is quite weak but breathing is fine although sometimes she has a very labored cough.

Is this the start of symptoms that will prevent eating? She isn't eating enough as it is, has become quite thin and pale. She is often complaining of feeling generally unwell - upset stomach and such and has taken to sitting in her robe instead of getting up properly with a bath and changing into clothes.

We try to tempt her out of the house with her power wheel chair but despite having been an outdoor person, in the last week she seems to be completely house bound.

Her walking is more labored - she has definitely lost leg strength and it is much harder for her to get out of chairs and into her walker, but her arm strength seems unchanged.

I fear that she is wasting away, but all attempts to get her to eat more or at least higher calorie food is met with resistance.

My main question I think is, does the gag reflex mark the onset of the disease progressing to the upper regions? if this is the case, I worry that we won't be able to reverse her decline at all.

 

[Nikki J]

Hyperactive gag is a finding in ALS but I don't remember hearing other people finding it interfering with eating. But every PALS is different. I am sorry she is having this trouble. Is she going to get a feeding tube? And you do know that you can't reverse ALS? You were speaking of getting her to regain weight? Once the weight loss starts your best bet is a feeding tube to at least supplement oral feeding if not replace it

 

[GregK]

Time for a feeding tube.

 

[julialee23]

I asked her about a feeding tube and she is refusing. I do know ALS is progressive - but I think I'm in a little bit of denial too. It just seems to me that there is more that can be done for her and her choices are limiting her quality of life. I read all the posts here and so many sufferers are making choices with the help of their families that seem to help them continue to enjoy life. Because my Aunt lives alone and has always been independent, she is stubborn about making decisions that contradict that lifestyle but in the process, her ability to remain independent is decreasing. Such a horrible disease!

 

[anderkling]

Who are the other people in her life taking care of her? What are they saying? Have you or others notified the medical progressionals involved in her care? Is she making an informed decision about refusing a feeding tube? She may need good information, if she's open to it. If you are not able to help her in this, perhaps there's someone in the medical field, the ALS clinic for example, who can. It is obvious you care very much for your aunt, and it's good you have reached out here for help.
- Charlene

 

[julialee23]

Thanks for the replies. I have spent the last week or so readying her home for 24 hour care which she finally agreed to. She was falling every day and by some stroke of luck, never hurt herself. She only had limited daytime care. Her falls generally came when she was alone but last weekend, she fell twice when her caregiver was with her.

The gag reflex has seemed to diminish since I last wrote and the Hospice nurse feels it is because she is trying to take all her pills at once in the morning, rather than over the course of the day. She wants to get it all done with in one go, and so forces them all down on an empty stomach.

She only has a hospice nurse and social worker who visit twice a week. They are doing their best to guide her, but she is refusing a feeding tube, and insisting on taking several supplements she feels are keeping her ALS at bay. In truth, the nurse feels they actually are making her queasy and may be responsible for frequent bouts of nausea which limits her food intake. She continues to lose weight.

She had been on a plateau for many months but suddenly seems to be taking a downturn. Her acceptance of round the clock care couldn't have come at a better time.

We feel she could be making better decisions to prolong quality of life - at least to keep her weight up, but she is convinced, despite her continued decline, that the supplements she has researched, are actually helping and that she will be able to get stronger. And who are we to scoff?

In the end, I think I need to realize this is her journey, not ours and she is strong willed and used to pleasing herself. It would be different, I think, if she had a husband or children of her own, who she was also worried about, but she has never had to compromise and is proud of being independent and overcoming all obstacles on her own.

I think she feels this is just another obstacle to be overcome.

 

[4tloml]

In the end, I think I need to realize this is her journey, not ours and she is strong willed and used to pleasing herself.

There is wisdom in your coming to terms with that, but accepting that is painful when we love someone and feel like we see a better way for them.

You are showing your aunt love and respect in doing what you can to ready her home and arrange care and communicate with her nurse and social worker. It sounds like thats what she wants and needs most from you right now. My thoughts will continue to be with you and your aunt.

 

[Barbie]

the gagging could come from phlegm in the back of her throat also. I am so glad you are letting her chart her own course thru this disease. and thanks for caring for her too.

 

[julialee23]

Thanks Barbie - it is VERY hard not to try to step in and handle things myself. THAT is my lesson in all of this. She has more mucous this week as we have discussed in the other thread so next time I see her I will watch for the gagging and if she asks for help, will recommend some of the things I have heard you all try on here. Tea is an easy one, and laying off the dairy. I know there are other more extraordinary measures for relief but not sure she will want to try them.