My Mom was just diagnosed with ALS

[tmackenzie]

just got off the phone with mom. I told her about you all and that she may be getting letters or cards... she started crying.

 

[HelenL]

Remember to get a good blender, from what others have told me, you can even toss a steak in them for PALS...Check out RCharlton and Barry's posts for blender recipes, and tips. They lived quite long with bulbar, and we miss them dearly,

 

[tmackenzie]

We thought of blending the steaks Last night she told me she had lazagna and it was very delicious. I think now that she realizes how important it is to gain her nutrition back and eat balanced meals (I pray) that she will eat, eat, eat.

 

[scotslassie]

Hello Tina, you sound like a lovely caring daughter, bless you. My aunt was bulbar onset and her first symptom was slight slurring of her speech. She herself was unaware of it for quite a while, even when it got difficult to understand her. She also tripped a couple of times and blamed her new boots, then she started having problems getting in and out of a car. Her speech problems were put down to her being partially deaf. I took her to a stroke clinic thinking it was that and that's when they started the investigations which led to her diagnosis. She also wouldn't eat properly (because she couldn't) and lost a lot of weight, then she had the peg fitted which eased her mind because she was afraid of choking. This is a difficult journey you are on but please know that there are people here on this forum who care about you and your mum and we will do everything to answer your questions and help you along the way. I would be more than happy to drop your mum a wee card now and then, so as soon as you are able, pm me. All the very best to you.

 

[sadiemae]

Watch these!

https://www.alsforums.com/forum/als...-research-forbes-norris-als-center-video.html

 

[scotslassie]

Thank you Sadiemae for posting that. Tried to pm you but would not accept.

 

[WellsRuby]

Great videos that Sadiemae posted. They helped me a lot and this is a great family to help you when you need it.

 

[scotslassie]

Agreed WellsRuby. Great Videos. I've pm'd Sadiemae but being a technophobe, heaven knows if she'll get it. x

 

[pscheffel]

Tina, from what I have learned, not one case of ALS is the same. Time frames are all different. My Mom's doctor would not give us a time frame. She has had patients with ALS for 15 years or more and some with much less....

 

[caldona]

My mom, since last fall started having trouble speaking clearly. (I always thought it was her medicine). Since Christmas she has lost approx. 50 lbs. She is now having trouble swallowing. She has to use a straw for liquids and have moist food to get it down. Some days her speech is better than others, but for the most part she is difficult to understand. I blamed all these symptoms on her migarine medicine, Topamax (after researching it). I swore by it. She has been on a list of medicine for many years for migraines. The thing that confuses me, is she can walk very fast... quicker than I've seen her walk in years. She was a smoker, quit for 2 weeks, learned of this...started again for a week... and is now quitting. She had the muscle test to diagnose it. She didn't really have very much muscle to begin with, because of lack of activities. She does not work (retired) and just chooses not to get out and walk or do things. She had a phone conference with Social Security Friday and they denied her ANY benefits! How can they do that? She has worked for many (maybe not many, but a few) years?
How do I private message on here? Jamiem, I would love to send you her address.

If your mom worked and they turned her down its because they have coded her wrong because with als diagnosis your automaticly approved for disability if they code it right

 

[sadiemae]

The code that MUST be used is TERI, for terminal.

 

[brooksea]

Like Lori indicated, they must code the application TERI. Your mom will most likely have to point that out to the SSDI rep, as a lot are not aware of the TERI Law for ALS. Also, she may not have enough credits to collect SSDI.

 

[amber]

I am new here as well. My dad was diagnosed May 2012. He has gone down very, very fast. I wish you the best with your mom. All I can say is spend the time you can with her and cherish every moment. I understand it is hard to do when you are so far away. I am sure your mom understands that as well.
God Bless all of you on here. You have all been so helpful since I found you!

 

[tmackenzie]

Sadiemae, that class was very informative! I wrote it down as she started explaing about the bulbar. That is what my mother started with and has. Very, very interesting. You know, she has been dealing with a pinched nerve problem that she has had MRIs for for months, even last year she was complaining of her neck. But the crying, that has been trouble for her. She cries very easily now. Now I understand. Thank you so much for sending that video. Also, today on the front page of the Detroit Free Press, there is a huge article on ALS. They are testing stem cell injections at Uof M.

 

[tmackenzie]

Thank you Amber. I wish you the best with your dad as well.