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Feeling very over it.

BlsdMama

By BlsdMama,
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BlsdMama

BlsdMama

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Losing most of the use of my legs was surprisingly minor. My voice is going rapidly and I’m beginning to truly grasp how much of our identity is expressed through voice.

 My foo talks over one another. My dad was one of 11 (in thirteen years) and they’re loud and boisterous. I snapped at him a month ago and said, “If you don’t make space for me to talk then I can’t talk.” People don’t mean to talk over but I take f-o-r-e-v-e-r to speak now. The rate is impaired as is volume. 
 

Can I admit the idea of mom-ing still young kids and teens without my voice is just totally overwhelming some days like today? 😭 

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GoVanGogh

GoVanGogh

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I am so sorry. I understand and feel your pain. Different diagnosis, but losing one’s voice is such a key part of our identity, esp as mothers. Hugs. Please always feel you have a very important voice, here and in your family. I do think it is important to point out things like this, as many people truly don’t realize what they are doing unless we do point it out. 

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kbutton

kbutton

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9 minutes ago, BlsdMama said:

My foo talks over one another. My dad was one of 11 (in thirteen years) and they’re loud and boisterous. I snapped at him a month ago and said, “If you don’t make space for me to talk then I can’t talk.” People don’t mean to talk over but I take f-o-r-e-v-e-r to speak now. The rate is impaired as is volume. 

Hugs. I hope they got the message and that they will lovingly adjust for you.

It stinks that it's necessary. I am so sorry.

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cintinative

cintinative

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ALS is a horrible, devastating disease.  I am so, so sorry.  A friend of mine's dad developed ALS but his progression was that he began with the loss of his voice. He was a pilot, so this meant he could no longer work.  We really take so very much for granted.  Prayers for you.

ETA: Have you thought about recording yourself reading a book for your kids for the future? 

Edited by cintinative
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Ottakee

Ottakee

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1 hour ago, Storygirl said:

I'm so sorry. It is so frustrating not to be heard. You deserve to be heard!

Have you considered an augmented communication device? I don't know at what point it would be helpful. I'm just wondering if it could help speed up your communication and relieve some of the frustration.

A friends son with ALS got a communication device with his own voice recorded.

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BlsdMama

BlsdMama

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17 hours ago, Ausmumof3 said:

I’m so sorry. I remember how hard the odd day has been when I’ve temporarily lost my voice. Trying to parent without it must be so difficult. 

The kids have become better people through this. I think an awareness exists of letting other people speak that didn’t fully exist previously? Honestly? So many of my parenting “tools” are gone. I think I relied heavily on working beside my kids as a relationship builder. That’s what I miss the most! But this is a new challenge. I feel really stretched and it’s uncomfortable. I feel like we’re constantly behind the learning curve. 

16 hours ago, Storygirl said:

I'm so sorry. It is so frustrating not to be heard. You deserve to be heard!

Have you considered an augmented communication device? I don't know at what point it would be helpful. I'm just wondering if it could help speed up your communication and relieve some of the frustration.

I do have a Tobii! It’s pretty amazing Tech. DH says it’s a top notch iPad with a $13k app. He’s not wrong. My speech is impaired enough that insurance covered it but good enough that it’s currently more efficient to still use my voice if that makes sense?

16 hours ago, TexasProud said:

Hugs, that is hard.  I also wonder about some kind of horn you can blow or something.  Sorry you are battling this. it stinks.

I have a sad, sad little horn on my wheelchair, lol. 😜 They’re usually pretty good for little kids. Some days not so much and it gets to me, kwim?

16 hours ago, cintinative said:

ALS is a horrible, devastating disease.  I am so, so sorry.  A friend of mine's dad developed ALS but his progression was that he began with the loss of his voice. He was a pilot, so this meant he could no longer work.  We really take so very much for granted.  Prayers for you.

ETA: Have you thought about recording yourself reading a book for your kids for the future? 

I had thought of it. I always planned to but it seemed premature. In my head I had a plan of hot progression would happen. It was pretty linear for a long time. The last six months were a snowball. It caught me off guard. Even my neurologist was surprised. I think we’re past that now. Even adjusting for volume, my rate of speech is choppy and slow. 

12 hours ago, BandH said:

I am so sorry.  That sounds incredibly hard.

Are you working on developing fluency with an augmentative communication system, so that it's ready when you need it?  It might be a worthwhile step. 

Yes. We meet with a specialist, have the equipment, learned to use it, etc. 

8 hours ago, Amy in NH said:

Have you considered banking your voice?

https://www.youralsguide.com/communication.html

Yep. I even signed up. DH built a desk in the big coat closet where I wouldn’t have sound bounce around. I bought the Snowball. It never seemed like a good time…. And I emotionally didn’t want to accept the necessity of it. And I really thought there’d be more warning signs. At first I thought I had a sore throat and I was waiting for it to recover, kwim?

 

 Most days I’m okay and I soldier on. Some days it seems like I’ve lost so much and it’s overwhelming to think of everything else and what the future holds is scary, especially for what my youngest kids will have to deal with. Other days I can take a deep breath and remind myself that it’s not today and that I don’t want to sacrifice today for the anxiety of worrying about tomorrow. Luke 12. Big deep breath. Thank you for the empathy, prayers, and encouragement. It helps more than you know. 

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JoJosMom

JoJosMom

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I am so very sorry that you have to walk such a difficult road. My child has graduated and I don't come here often, but I think of you and pray for you. I lost my grandmother to ALS, the bulbar form. ALS is awful; you are handling it with amazing grace and strength. ((Kelly))

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