SO many questions...

[poppy62]

Newly diagnosed hubby. Getting weaker in arms and legs now, but mainly bulbar problems for at least twelve months.
It's all happening so fast now. He is 57 this year. Its been so helpful to read everyones posts. The neuro, gp and books can describe the disease but they dont prepare you for what actually happens.
I am just finding my way around the forums and thank everyone for sharing as i learned so much already.
God bless you all.

[ottawa girl]

Hello Poppy -

So sorry to have to meet you here. Indeed, you will find oodles of information on this site - all given from the nicest people on the face of the earth.

Good luck to you and your family.

[panguinjen]

Hi Poppy,

Welcome! My husband is a bulbarian also! Best group of people here! Don't hesitate to ask questions! We'll do our best, there are so many here with great info!

Jen

[glupavomomiche]

Hi Poppy -Welcome to the forum and sorry you need to be here, but we're all in this together and will do what we can to help and answer questions!

[CindyRN]

Hi Poppy....sorry that you need to be here but as the above have mentioned. There are alot of wonderful people here and very knowledgable so whatever questions you may have...please ask.

Cindy

[vzandt]

Welcome
Poppy

[ruthiep]

Hi Poppy, so sorry you have to join us on the journey that none of us want to be on! That being said, hang in there, this is a tough road but the love, support and overall encouragment you will find on this forum is amazing! Sending big hugs and lots of prayers your way!

Ruth

[momap53]

Welcome Poppy. This site has been a lifesaver for me. Be sure to check out the archived posts for info on just about every topic you can think of.

[HelenL]

Hi Poppy, welcome to the forum family.

[poppy62]

Hello everyone and thank you for your welcoming words.
I am still overwhelmed by it all.
Hubby is losing weight quite rapidly now and won't even consider a peg as he sees no point in prolonging it.
I am trying to understand and respect his wishes but it's so hard...
Finding the forums has been a lifeline for me because I have been feeling very alone.
We have only been together for three years, our first wedding anniversary is in October.
I'm not ready to give him up yet...

[Judith Ann]

Welcome Poppy!

Judy

[poppy62]

can anyone tell me of their experience of having the peg fitted please?
if i can reassure hubby enough, maybe he will at least think about it. he has major anxiety issues too which are making things worse for him than they appear. i can only hold his hand sometimes and wait for whatever to pass, as whatever i say doesnt change things for him.
he wasnt having stents after a heart attack but when it came to it, he did. so i am hoping he will change his mind when his peg appointment comes through. he's been referred to the RIG team as he cant bear to swallow the camera tube and is being tried with a finer one through his nose.
has anyone any advice on this please?

[panguinjen]

Hi Poppy,
Please ask if inter ventional radiology will put in a g- tube. Rog couldn't tolerate anesthesia or the camera down either nose or throat. IR used a bi-pap to administer just enough anesthesia to take the edge off and a local anesthesia at the site of the tube. Rog didn't have any nausea, throat pain or major discomfort after the procedure. His stomach didn't have gases or cramping. He doesn't choke anymore, is keeping the weight on....

Jen

[poppy62]

Hi Jen,
Thank you so much for your response. I have just read out to Clive what you have written, and he thinks he might be able to give it a go.
We will definitely discuss it with the MND specialist nurse that comes to see us. What a wonderful note to end another long day on...
Love to you both from across the pond...
Poppy

[HelenL]

Hi poppy, not sure how old your hubby is, but have him look at BarryG's postings... he lived for more than a few years, contributing, enjoying his little girl, all on a peg. Good luck in whatever he chooses, but remember that he may not know there are options.