How much longer?

[affected]

I'm up on the Far North Coast of NSW

Too far to visit for a cuppa, but if you need to talk to someone, as soon as you can do PM we can link up phone numbers.

Please don't think I'm just 'kind' - these people have become family to me, and any support I offer always gives me some support back. So I'm as selfish as anyone really

 

[ECpara]

If your mother needs a respiratory function test, ask for a plastic pillow mask. It seals around the nose and mouth and keeps air from escaping during testing. That's the only way my husband (Bulbar) has been able to test for over two years now. Finding our her FVC would give you better indication where she's at. My husband's last test showed decline in his diaphragm, he will be outfitted for a a Trilogy bi-pap machine next week :-(

 

[MaxEidswick]

>I'm up on the Far North Coast of NSW

I used to play in a golf tournament just over the border in the Gold Coast

 

[weavie]

Hi Tillie, I'm fairly new to the site and still trying to work things out. Can you tell me what PM is ?

Mum tried the nasal CPAP and couldn't tolerate it. Even since I started this thread this week, my dad is now having to wheel her around the house in a wheelchair as she is too weak to walk with the walker. I also sense she has had enough. I feel so helpless.

 

[Nikki J]

Pm is private message. You can not private message until you have a certain number of posts. I think it is 25

 

[weavie]

Thank you Nikki.

 

[MaxEidswick]

have you contacted you local MDA/ALSA (Katrina please translate)?

 

[weavie]

Yes Max, we are in contact with the Motor Neurone Disease Society in our state and have a new local representative who visited mum last week. They have been very good in helping set up support services over the past 18 months.

 

[weavie]

Tomorrow will be a stressful day. Mum is due to have her PEG tube changed. She is going to our local hospital day stay unit. I am worried about her having sedation as she is so sleepy anyway. I don't know if she has to lie flat for the procedure, because she can't breathe when she lies flat. I will go and speak to them before the procedure, because I don't think many people, even health professionals, have much understanding of the disease and how it affects individuals in so many different ways.

 

[opsy135]

your mother will be fine soon take care.

 

[opsy135]

do not loose hope

 

[zoohouse]

My husbands peg tube change was much easier than the first insertion. Once there is a channel it is much quicker, and just mention that she can't be flat. My husband used his sip & puff during the procedure so there was no interruption in his breathing. It will be a bit more complicated if she doesn't use a bipap or some other type of respiratory support. Maybe they could have someone use a bag and mask during the procedure to assist her.

Paulette

 

[weavie]

Thanks Paulette. Thankfully all went ok. They chose not to use any sedation as a safety precaution (I was pleased) and the gastroenterologist was happy to do the procedure with her sitting up to about 40 degrees ( I was pleased) . It was quite painful having the original tube removed, but the pain soon went. She now has a button tube. I have given my dad a lesson on using the new system tonight, he is amazing learning all these new things at 74. I am so proud of my parents.

 

[affected]

Great news that they took your words into consideration and did the procedure so carefully and well for her.

We had a bad experience when the peg was changed, our gastro was away, the one that did the procedure couldn't have cared less about anything...

Your dad is awesome, you should be proud.

Mind you, I think we are going to notice that you are also an awesome daughter, becoming closely involved and supporting them both. You will never regret one single minute you give them

 

[NeedCourage]

Tillie -
"You will never regret one single minute you give them"

Yes - I needed to hear that. Thank you for being such a helper. I feel a weight lifted because I know in my heart I WILL NEVER regret whatever is needed in the future.

Blessing to you and to weavie... Nancy xo