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weavie

Member
Joined
Mar 8, 2014
Messages
28
Reason
Lost a loved one
Diagnosis
11/2012
Country
AUS
State
Victoria
City
Geelong
Hello, this is my first post on ALS forums.
My mum has MND.
Her onset is from the bulbar area.
She cannot swallow, her speech is almost impossible to understand, she has to try and spit up oral secretions every waking moment, sleeps most of the day, has been fed via PEG tube for past 12 months, can still walk around the home with a walker and is getting weaker every day.
She was diagnosed 16 months ago, however probably had the disease for almost 12 months before she was officially told the diagnosis.
Her chest sounds quite 'rattly' most of the time now, her cough is weak.
She is sick of spitting up all the time, it is exhausting.

I know each case is different, but does anyone know how much longer I will have with my beautiful, brave mum?

weavie
 
Hi Weavie,

so sorry about your mum. No one can tell you how much more time your mom has, so try to cherish every moment you have now. Have you talked with her doctor? some times they can give you a better idea of the progress. Sleeping more and more is a sign of CO2 build up--is she using a bipap or trilogy to help her breath?
This is an awful disease and it is so hard to watch the ones we love suffer and fight.
 
Thanks Barbie,
Unfortunately she has virtually no contact with her neurologist anymore as there is nothing they can do. I am not sure how much experience her GP has had with MND, I think very little. She visited a resp unit last week and has come home with a Bipap machine to try at home. She doesn't like it (nasal mask) as she feels as though she is suffocating with it on. As the GP has also increased the amount of Morphine Mixture she has to help her sleep, it is difficult to know if the CO2 buildup is worsening or if it is the effects of the Morphine.
Thank you for your kind words.
 
Hello, this is my first post on ALS forums.
My mum has MND.
Her onset is from the bulbar area.
weavie


Right there with you. It sucks. Local docs are not experienced enough. Mom just lays and gets worse and nobody seems to know what to really do. Too weak to make the trip to neuro at ALS clinic 3 hours away and when we did go, all they said was, "She probably has ALS." I thought an ALS clinic would at least run her throught the ringer and give some ideas on assistive devices.
 
call back the resp. therapist. they should help have some other masks for her to try out.
 
That is pretty much the experience we had with my husband even in Dallas. We have a physiatrist that follows him here, and has actually given us her person cell number. Her office contacts us every 6 weeks, and we can Skype with her for our convenience. She is amazing, and has been very proactive in keeping him up and going the best he can, even if that means a splint so that his hands don't cramp. I had her myself many years ago when I ruptured a disc in my neck and was left with a deficit. She was very hard to get into, but it seems that she has a very special place in her heart for PALS. She has 20+ patients that she is following right now, and she knows her stuff. I wish all of the PALS were as blessed as we are. It is physiatrists that follow my husband at the VA, so maybe you could ask your doctor if there is one available for you that is not too far away.
 
Thank you barbie and Zoohouse. Because my mum has sooo many oral secretions, a full mask is not possible as her mouth needs to be free for the constant spitting. She doesn't have enough strength in her hands to get the mask on and off herself. She is going to keep trying and see if she can get used to it for now.
The idea of a physiatrist sounds very interesting, we don't have that role here in Australia. I am so glad to hear that this is useful for you and your husband.
 
There are also nasal pillows that can be worn, allowing access to the mouth for suctioning, or the ability to spit. We actually have to have a humidifier on his BiPap because his mouth dries out so quickly, so see if she can soldier through, and she may find that it dries her secretions up a bit, especially if she doesn't use a humidifier on hers. There are also some medications that can dry the mouth out a bit, but of course the names will be different in Australia. I would contact your doctor and see what would be best.
 
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