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4afriend

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Joined
Jan 17, 2010
Messages
12
Reason
Friend was DX
Country
AUS
State
NSW
City
Sydney Australia
Hi and thanks for having me here.
my best friends husband was diagnosed with Bulbar onset 5 months ago and has a feeding tube and now has trouble breathing and holding his head up,

my friend is too fragile to be getting more informed but i thought i could hlp by getting information and being involved and maybe just give her some tips as she goes on.
 
Hello fellow-Sydneysider.

My mother is bulbar, diagnosed last September, so sounds about the same time as your friend's husband. She was diagnosed after nerve tests at RPA. Mum can't speak at all and can only eat pureed food. She has a feeding tube. Her legs have started to give way under her unexpectedly. She uses a walker now and has a wheelchair for longer trips out.

We attend the clinic at Wahroonga - and various other health professionls at Royal North Shore and other places. There are soooo many doctors and allied health professional involved in this disease!

The people on this Board are very knowledgeable and helpful so you've found a good place. There is good solid information on the Motor Neuron Association websites (try the Victorian site and also the NSW site for fact sheets and other information). We have attended very good information sessions at the Motor Neuron Association of NSW offices in Gladesville. There are support groups that meet regularly around the place too.

There are two people in Wollongong who are bulbar also - one is on these boards sometimes. You'll find other bulbar patients on the PBP Support Group forum as well.

All the best.

sesl
 
Is it just me or does it seem like most of the PALS are now being diagnosed with Bulbar Onset? How many people on the forum are Bulbar Onset?
 
Hi Sesl
thanks for the reply.
my friends are in wagga and have been attending randwick clinic.
His legs and arms are losing muscletone but he is still walking and doing everything ok.
the big worry now is his breathing and really bad neck slouch - he is finding it hard to hold his head up.
its such a horrid disease :(
 
Hi monkey Girl... I was diagnosed with Bulbar onset.. L
 
Hi 4afriend,
Welcome to this site from another aussie.
Sorry you had to be here
As sesl said there is a lot of info on here that will help you as well as the MNA of NSW.

If you have a particular question, just serch for it or just ask it as i am sure someone would have an answer or suggestion for you.

Peter
 
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Hello 4afriend! I just wanted to say that you are a really good friend to be helping out the way you are. Having a loved one diagnosed with ALS can be so devastating and overwhelming all at the same time. You will find a ton of information here, along with the support YOU will need to help support your friend. Your friend will really need to take good care of herself, mentally and physically. I am really glad she has you for a friend!
Hugs,
Blubear

PS Kay Marie....my dad is Bulbar onset
 
Thanks everyone i feel like i can help P already!
Her husband is having difficulty holding his head up and is in a lot of pain - is there a magic something that helps this?
he has always been such a blokes bloke riding motorbikes and working in the shed now is spending his days on the lounge asleep mostly with occasional energy spurts.
their son has moved his wedding forward a year and is getting married next week - we are worried he will stop caring after that....

well done for all this sharing - My friend can barely talk about it without falling in aheap and she is not sleeping or eating.
60 is too young for this horrible disease as you well know. xx
 
Welcome 4afriend , your username says volumes , what a very special friend to have .
I was diagnosed in march last year with bulbar onset that january , 2009 . I had to stop fluids and food by late June and had a peg inserted in July . My legs are going from under me and I have a foot brace on my right leg , I now have a walker for indoors , and a wheelchair for outdoors . I nod off to sleep for power naps very pften , and can't keep awake . My lung function is poor and I have 3 hours of oxygen a day , I'm also asthmatic so need it . I'm clumbsy too , and with my grip I keep dropping things . xxxxx
 
I am not that special - honestly i wish i could do something but feel very helpless.
i just remind them the normal things we all forget and to live for today and not tomorrow and not yesterday so we dont have too much anxiety about the future.
this is a bastard disease and for you going through it i am so sorry.
my friend has good function in his legs and arms still so that is to be grateful for - i will tell him to climb a mountain today :)
 
Welcome to the site.
There is a wealth of experience here from both PALS and CALS. Most of us are not doctors, but speak from experience.

It is a good thing you are doing for your friend. If at all possible, getting your friends hubby to participate online will give some hope to keep going while having this ugly disease.

Live for today , one day at a time. Plan for the future, BIPAP/PEG/TRACH. Some people plan to not have these things, and that is their choice.

Its all about a positive attitude, and maintaining your energy. If he feels tired , let him sleep.

Glen
 
From sydney also, but south west area, we don't have many groups out our way to turn to for the MND- the association just started groups here in Camden area about two months ago. Mum was diagnosed back in Feb 09 with Bulbar onset MND, she is in hospital at the moment as her neck muscles have weakened extensively just before christmas, and her swallowing is becoming a big issue.

Any information you are after you will find on this forum, great lot of people here!
 
Hi 4afriend again! What Glen said is so true. If your friend is just to overwhelmed to want to know what to prepare for, it is a good idea that you could maybe plan ahead for her. Know who to call and where to get the things needed in the future before they happen. Again mate, keep looking through this website for all kinds of info. Thank you for being so caring for a caregiver and an ALS patient!
Hugs Again,
Kari
and yes BIPAP/PEG/TRACH in that order most likely.....do you know what these are?
 
Thanks Kari.
He has had Peg and Bipap.
I dont think he has thought about Trach - he is living in the clouds a bit but i guess thats whats getting him through.
Thats one reason his wife is so stressed as he doesnt want to learn more or own the disease.
they got a peg in December - he is still chewing and swalling some food which is good but the peg keeps him really hydrated.
I read and passed on last year before i joined this website that its really important to get ready and do stuff before you need them desperately so you have choices so im glad they did that and its working no stress at all.
Do you have a Trach yet?
 
Hi Again 4afriend, ...my father is still only on Bipap THANK GOD! But I watch as his breathing gets a bit more labored now, and some of the things he used to be able to do like making trips up and down stairs have been cut in half. He is Bulbar onset and was showing symptoms for almost a year now. Luckily we are still hanging in there. I try and stay on here to learn as much as I can so I can help take a load off of my mother when she will need it in the future. I just want them to go about living life as usual, and let me be in the background watching their backs in case they hit a roadblock.....then I will be prepared. Unfortunately, from reading all of these posts, I know more than anyone in my family, the really bumpy road that lies ahead. As far as the Trach, you might just want to find out the "whats it for" and "how you can get it" info now. Lots of people here have one and it has really helped their quality of life. My father doesn't even want to consider or think about such things, but I suspect that when things start getting even more rough he will come around. My mother, (who's sister just passed away last Thursday) is a very strong and educated person, but even so, I KNOW she needs backup now, and in the future. I love my dad soooooooooooooo much! And I cannot even comprehend what she is actually going through as his wife of 47 years. Its all just so heartbreaking.
Hugs,
Kari
 
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