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Kmbertrand

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I have been waiting for our official diagnosis from and ALS specialist/neurologist to post and we got it last Thursday so here I am.

My mom was her normal awesome self in April this year. In May we noticed she was slurring her words and she had a couple of falls while cleaning the house.

In June we took her to ER as she was having significant leg weakness and the slurring was becoming more prominent and we thought maybe she had had a stroke. They worked her up for everything and all was negative so they sent a consult to a neurologist. After that appointment she received notice from a larger hospital that she had an appointment at the ALS/NMD clinic.

By the time that appointment came July 30 she was walking with a walker, very tired and slurring much more obvious. We had the appt on AUg 23 where she had another EMG and we received the ALS diagnosis.

So from April 2018- August 2018 she has declined so much that she is wheelchair bound and on bipap for night time and having difficulty eating and drinking. The physician and the nurse at the clinic have not given me any idea of what to expect as far as timeline and say that everyone’s progression is different.

My question is: has anyone had or cared for someone who had such a rapid progression and then completely plateaued for an extended period of time? Or should I expect that because she has progressed so rapidly that she will continue to do so and I don’t have a lot of time with her. I’m hoping to take some time to be off of work with her and help be a caregiver for her but I’m afraid to be off too soon as I will only have about 6 months to be off with her. Thanks for your time!

Kristen
 
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KarenNWendyn

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Sorry to her about your mom’s diagnosis and rapid progression.

Progression does vary widely from person to person, and plateaus do occur. That said, people who start out rapidly from the start and progress as quickly as your mom are likely to stay rapid in their progression. If she has plateaus, they will probably be very short.

She probably doesn’t have much time left. I would recommend trying to spend as much time with her as you can manage. So sorry.
 

lgelb

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Very sorry about your mom, Kristen. Karen is right -- this is your time together. Let us know if we can help, for questions big and small.

Best,
Laurie
 

affected

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Kristen I'm so sorry to welcome you here.

As already said plateaus can happen, this disease is so unpredictable. However, I would take the time now as it is more likely that she is going to remain rapid. It's the breathing that is the big thing - some PALS lose their legs quickly but live for years in a wheelchair with great quality because they can breathe fine.

You mum is already having many parts of her body failing - she must be terrified and getting every moment you can being with her, giving her high quality care and all your time and love will be the most important thing you can do now.

We will support you here xx
 

LeslieR

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Sorry Kristen. What you describe sounds like how my Father progressed. It was very rapid all the way to the end.
 

Bestfriends14

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I'm so very sorry,Kristen. Please spend as much time with your mum as you can. Hugs to you.
 

Kmbertrand

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I cannot thank all of you enough for taking the time to respond to my messages. This has been the most difficult thing and I never imagined I’d be here. Having two kids (7&9)who are back to school today but also wanting to spend every minute with my mom who is 4 hours away has been heart breaking as I feel pulled in both directions. I appreciate all your responses and thoughts and love. Thank you!
 

affected

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Kristen maybe get your mum to join here too so she can have some support?
 

NinaP

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My mum almost progressed the same way. Now she is bedridden and cant move anything apart her eyes and her head. Mum is breathing ok and only eating from blender. I think she is steady this month apart from a virus she had. She doesnt seem to get worse. Doctor gave us a prediction of 8 months but everyone is different he said. Sorry u have to deal with this. Hug your kids strong and be thankfull. You have a great source of happiness.
 
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