My mother's ALS started in her tongue...

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Siri

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Greetings from Denmark everyone
I'm brand new to the Forum, and I'm still unaware of many of the technical terms for ALS, so excuse my ignorance and possible lack of English expressions. I don't mean to offend anyone.

My mother was diagnosed with sporadic ALS just about 2 years ago. She was 64 at the time. It started out as a slight annoyance in her tongue. She described it as if her "tongue was in the way", and the annoyance slowly turned in to a lisp. Eventually she had trouble speaking - her speech would sound as if she was tipsy by the end of the day. She obviously also started having trouble eating and would very easily choke on food. She got diagnosed after 8-10 months of observation from doctors. They didn't suspect ALS for 6 months because it progressed rather slowly at first, and because the symptoms started in her tongue. She stopped speaking completely in January. She can only communicate via writing and hand gestures now. Barely. She now also has trouble holding her head up, and her arms are starting to become very weak. Her legs are her strongest muscles as of now, and she still walks independently. But because her oxygen levels are so low, she is very fatigued all the time and has no energy.

I hope this isn't insensitive of me to bring up here, but she has no desire to stay alive. She wants to die, and she wants to die very fast. She announced to me a few months ago that she wanted to seek euthanasia in the Netherlands, but already now I think she would be too weak to make the trip. I'm mentally really affected by it. Not because I don't support her wish or hope of dying, because I most certainly do. But I'm so sad that she has nothing to live for anymore, and I would honestly wish for her to pass away gently in her sleep if that is what she wants.

I'm very curious to know if you or your relative/loved one have been diagnosed with ALS where symptoms started in the mouth region? If they have passed, how long did they live with the diagnosis? And if you are diagnosed, how long have you been living with it?

Thoughts and prayers go out to everyone affected by ALS.
 

Nikki J

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I am very sorry about your mother. What she has is called bulbar onset ALS and happens about 1/3 of the time. Although bulbar is generally considered fast progression there are certainly exceptions to that here and elsewhere

if she chooses no interventions like a feeding tube or non invasive respiratory measures things will go faster of course. Does she at least have a neck collar or support? That is purely a comfort thing.

you sound like a wonderful daughter. My mother ( whose onset was FTD then bulbar and limb seemed to come almost together) did not want to live impaired either though medical aid in dying wasn’t her wish either. I too longed for a gentle passing at night. In the end it was quick although not in her sleep.

there are threads here about people’s choices. Do you have access to hospice services? There may not be options like in the Netherlands but they can help with comfort and promote peaceful passage
 

Siri

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Thank you for your reply Nikki, amd I'm so sorry for your loss. How long did she live with the diagnosis for?

She refuses any respiratory aid and has no neck collar support, but she does have a feeding tube and has had it for 6 ish months now. It is somewhat of a new occurrence that she has no strength to keep her head up, but I definitely think I'll suggest a neck collar for her.

She gets plenty of help and she could get more if she wanted that - the healthcare system in Denmark is free and generally really good.
I sadly can't be with her every day, but she has nurses feeding her 4 times a day, and luckily a lot of friends willing to help her with everything (although she only wants to see me and one other friend - she has no energy for other people, sadly)
 

affected

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I'm so sorry for this diagnosis, I am glad you have reached out here.
My husband was also bulbar onset and quite rapid.
Do you have palliative care or hospice there that could help her with her wishes?
 

lgelb

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I'm very sorry to hear about your mom. If there are nurses helping her and it is her wish, morphine doses will reduce her air hunger, though they may also shorten her life. I would think that in Denmark, as in most countries, there is a way to grant her the self-directed death that she desires. It might be a conversation that instead of mechanical breathing support (BiPAP), she chooses medication support, regardless of where it leads.

I would start with a medium density foam collar, the kind with a cutout notch in the middle. Some are sized to neck height, which is important for comfort.

Best,
Laurie
 

Firefighter58

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I am very sorry to have to welcome you here but so be it. I also suffer from Bulbar ALS and as you can see, I have lasted a long time. I communicate with an iPad with a free app that I found on line called Text to Communicate, lam confined to a wheelchair, I can't talk or walk but still enjoy life. Maybe your mom could use the assistance of a medical doctor to assist with some drugs that may improve her outlook on life, I hope so, she deseres to live. I only have the use of one hand but I still manage. I hope you can find comfort for your mother and your self.
Al
 

WillowJ

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Hi Siri, my mom had bulbar onset ALS (it also started in the tongue and throat). It sounds like her symptoms and progression were really similar to your mom's -- she had pretty extreme fatigue early on because of the challenges breathing. She lived for about 16 months after her official diagnosis, and by the end she was really ready to go. I'd be happy to talk more about what I learned as her caregiver and some of the things that I would change if I could do it again. And I found that it can also be uniquely hard being a child taking care of a parent, so always happy to share notes on that too. Sending you strength!
 

BellesDaughter

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Hi Nikki. My mom also has the bulbar onset and it started in her tongue/mouth. Your mom's progression sounds exactly like my mom's. I am so sorry she feels this way but it is incredible of you to support her wishes. My mom also cannot speak or write; her entire upper body is essentially paralyzed minus 3 fingers. She can still breathe on her own and walk with a walker but her legs are getting weak. I hope and pray you find peace in this journey. I am so glad this forum is here, I didn't even know it existed for the first 3 yrs of my mom's diagnosis! It's amazing. Thanks for sharing your story.
 
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