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Herdaughter

Active member
Joined
Sep 15, 2017
Messages
50
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
Oregon
City
Portland
This is my first time posting, so please feel free to advise if I’m not posting in the correct spot.

My mom was diagnosed in September and given an functional rating of 43 after her first clinic that same month. Last week, we went to her second clinic and her rating dropped to 28. Her lungs are the biggest culprit. The nurses tell us not to focus on the numbers but that’s a huge drop in 3 months.

She will start radicava next month and is now using an AVAP machine albeit reluctantly as it makes her feel a bit claustrophobic. The docs are placing great importance in the AVAP and not as much on Radicava. They are putting in a PICC line for the IV versus a port. I’m not sure why.

I’m very concerned about the rate of my mom’s decline. I wish she would get some help come in as I don’t live in town and can’t be there all the time. She says she doesn’t want to move into a care living center if she’s just going to die in a few months. It’s all really hard to hear but I also understand not wanting to spend the last couple of months of her life trying to adjust to a new living situation.

Ok - enough rambling..........does als progression ever plateau or does it remain progressing at a steady rate- whatever rate that may be?

Thank you for your help.
 
Welcome Herdaghter. You will find that his place is a lattice slice of heaven on earth. I’m sorry though that it’s here I hade to meet you.

Yes, where you posted is absolutely fine and ask as much as you like. We’ve all been there.

ALS can plateau. Sometimes it does. However, each persons journey is unique. Some fast, some slow, some plateau, some don’t. Some start slow than speed up. Some start fast then plateau. There is no rhyme or reason and no one can predict what the next person will experience.

My husband, Brian, started very slowly with a limp. It took us 2 and a half years to get a dx because during that time there was no other progress. Then the next year and a half took him all the way to wheel chair and 3 years after dx, he chose to vent. Now 7+ years later he is still with us, but has no movement save smiling and using a speech device with some slight movement in 1 thumb. The vent is what has kept him here.

Even though the vent has kept him with us, that is not true for everyone who vents either. I so wish I had some definite answers for you, but i don’t.

The best I can tell you is to enjoy every moment you can with your mom. Makes sure she has help available to her as sooner or later she will need someone just about 24/7. Make sure she makes her wishes known as to being vented or not. Get it in writing. Makes sure someone is power of attorney in regards to medical decisions among others. Also if she doesn’t have an advanced directive as to CPR, get that worked out as well.

i hope. Haven’t overwhelmed you with all of this info.

Many hugs,

Sue
 
Herdaughter,

I love the name... and from the brief post, I've discerned that you are indeed, "Her Daughter"! She is lucky to have such a caring daughter. My wife was told in March of 2015 that she was within 6 months of life's end. We're about to celebrate the 3rd Christmas that she wasn't expected to have. F'n awesome as far as I'm concerned. :) So I guess that what I'm trying to relay is that "it isn't over until its over!" This journey is full of challenges... and often we are given choices in how we respond. I would encourage you to respond in an upbeat, "we're still here" mode... as this has personally served me well.

I wish for you my very best!

Jim
 
Greetings fellow Oregonian and welcome to the forum. Regarding the emphasis on the BiPap machine (AVAP in your case), it’s because it really decreases the work of breathing and can greatly improve quality of life and prolong survival. There’s a thread in the general forum about experiences with Radicava. It’s a new drug and may slow disease progression particularly in people with fairly recent disease onset and good respiratory status. It wouldn’t be a substitute for a BiPAP or AVAP machine. The other thing to be aware of is that it’s not likely to restore any function that’s already been lost. So that’s probably why the docs are putting more emphasis on the breathing machine than on the Radicava. As far as PICC line vs port, it seems a lot of people start with a simple IV and then go to the PICC once they know they can tolerate the drug. If they choose to continue after a few cycles using the PICC, then they get a port. A port is more permanent but requires a more invasive surgery placing the line in blood vessels near the heart.
 
Thank you so much everyone.
Much love and hope to everyone.
 
Sorry to hear about your mom.

Generally things progress, there may be a slowing and then things speed up again. However, the overall rate of progression generally reflects that first phase, so it sounds like your mom may decline more quickly than average overall.

Still, don't stress about that scale as it is really just a means for conducting clinical trials that the FDA and other regulatory agencies approve of. As a categorical scale, it is very loosely correlated, if at all, with progression and survival. The latter rest much more on having people and activities that are enjoyed, the right equipment, nutrition and hydration, sleep, etc. And it is not linear, so don't try to calculate a percentage decline based on the scoring.

Let us know if your mom needs help adjusting to the AVAPS. There are many masks beyond whatever she was supplied with, and settings often need tweaking from the prescription level.

Best,
Laurie
 
Thank you Laurie. I’ll keep you posted on the AVAP. The pulmonologist adjusted her settings this last visit and it seems to be working a lot better for her. Whew!

She has awesome friends who keep her busy with fun and helpful visits AND she learned how to grocery shop online and have it delivered directly to her kitchen counter so activities in that arena are going well.

She’s still pretty mobile. She uses a walker got around the house and short distances. She has just recently needed to use a wheelchair for longer outings.

I really don’t like focusing on numbers but here’s the rub.......she lives alone and I do not live in town. She is digging her heels in on all things home care related. Has her POLST completed but nothing else. She really needs to get some folks lined up for eventual care in her home if she doesn’t want to move but refuses to let me help her with that. I’m sure I’m not alone in this situation. I’m feeling panicked and frustrated which I’m not sharing with her because she just gets mad - plus this is her journey to handle the way she wants. I don’t want to be disrespectful.
 
"this is her journey to handle the way she wants"

Wise.
 
herdaughter welcome - I'd strongly suggest you get her to join the forum here. She could talk directly to other PALS, some who live alone and could get some brilliant, practical help without being judged.

You can only do so much, and it's very hard in your situation. It is her call at the end of the day, which doesn't make you worry one jot less.
 
Thank you for the caring and wonderful suggestions.
❤️❤️❤️
 
I am newly diagnosed like your Mother and I have a daughter that has the same concerns. The hardest part for me is seeing my adult children struggle with my diagnosis. I wish your Mother the very best and tell her to fight on. That is about all we can do. I do recommend getting the proper paperwork in order as suggested. I pray your Mother's journey is long. Enjoy every moment you can.
 
Nurse321. Thank you for sharing with me. I’m so sorry to hear you have been diagnosed with ALS too. Your words will be held clear and close to my heart. May your journey be a long one filled with love and joy.
 
Herdaughter - I've learned from our own experience with my dad that progression varies for every PAL. My dad just had a weak right hand for at least 1.5 years before diagnosis. Then in a little over a year it became his right arm, then weaker in his left but still able to move it. He was walking right up until a month ago when everything declined at an astonishing rate. We thought we were going to lose him a couple of weeks ago, but he has stabilized.
Try to focus on the time you have in the present. I am sure as she has to deal with her losses everyday, she will figure out on her own what help she needs.
 
Your mom is lucky to have a loving daughter. I'm new here too.
 
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