My mother’s diagnosis

[AliCat]

Hello to all,

As I’m sure everyone here can understand, I never thought I would need to post on this forum. My only knowledge of ALS was through the ice bucket challenge! My 70 year old mother was diagnosed with ALS at the beginning of August this year. I first noticed something wasn’t quite right with her 4 months earlier, in April. She FaceTimed me from her vacation in South Africa and I noticed she was slurring her words a little. I even joked and asked her how much wine she had! I didn’t think much of it until May, when her speech was still odd. She told me she had had two clean MRIs, checking for stroke.

She saw a neurology specialist at Brigham and Womens in Boston in July , who first mentioned ALS and sent her for an EMG. It wasn’t normal so he sent her to another neurologist at the ALS clinic at Mass General who agreed with the first doctor. It’s ALS.

I can’t even comprehend that this is happening. She has always been so healthy and active. She and my stepfather have traveled the world over the past few years and now she has a cane. I would assume from reading this forum that she has bulbar onset and I can hardly understand her speaking at this point. She says she feels ok and she’s getting a port for a feeding tube so she can keep her weight and energy up. I’m just so devastated and terrified and I don’t know how to help her.

Thanks for reading!

Alison

 

[Nikki J]

Hi Alison. I am very sorry to welcome you. Of course you are still in shock. How could you not be?

I am happy she has chosen a feeding tube. As you say it helps maintain weight and energy.

I am happy too she is at MGH. Everyone there is great and very kind.

Don’t hesitate to ask questions. Also feel free to browse and to search. There is a lot of information here but read at your own pace as this time is so overwhelming

 

[lgelb]

Welcome, Alison. No question is too big or small. Give yourself time to process and you will know how to help her, because at root what she needs is to live as best she can until she can't, and you know how she defines "best."

It sounds like she's putting on a brave face, and she may swing between anger and grief for a while, so you can let her sort those out and be there to listen when she wants to talk.

Best,
Laurie

 

[chally]

Sorry about your mom

It takes time to settle down after dx

Post often ask questions

The forum is great place for support

Welcome

 

[Cherise77]

I’m so sorry for your Mom’s diagnosis. I know how you’re feeling as my Dad was diagnosed this summer too in July. Father of 3 and Grandfather of 5. This came as a complete shock to our family as i’m sure it did to yours.

I think having support from family and friends has been very helpful. As well as this forum for any questions you many have. I know i’ve had lots as I knew very little about this disease before hand.

We got my Dad into a trial for AMX0035 that he started a couple weeks ago and that has really given us all some hope. Especially my Dad, which is great to see him acting a little more like himself again.

Reach out if you want to chat. I’d love to talk with another FALS. God bless!

 

[Narrowminded]

Hi Allison,

Sorry to have to welcome you here, but you will find this like a little slice of heaven. Ask away, plenty of people to respond. No question is too big or too small.

Hugs

 

[Doglady]

Hi Alison,
Welcome and so glad you joined this forum. You will get a lot of help - as much as you look and ask for. I’m pretty new too and have already learned a lot by searching the old closed discussions.

Has anyone told your mom about the Predictable App? There’s a lady in my local ALS Support group who also has bulbar onset and she uses that to communicate. She expresses herself very well and even cracks a few jokes. I have the app on my phone as I was able to voice bank but there are many pre-recorded voices to choose from that sound better than my own.
Best wishes! Mary