astro

Yes, it was fast, too fast. The selfish side of me wanted her to live forever, but I am comforted by knowing she is now at peace, no more torture from this hideous cruel disease. Please take care of yourselves and your loved ones. x

I'm so sorry about your mom, and it took her so fast. Hugs and love to you. She is soaring with wings of gold.

So very very sorry to hear your mom has passed. Love to you

Just wrote long pm only to discover I can't send it to you. I think you need 25 posts before you can pm. Anyway, in a nutshell feed we use is nutrison made by nutricia. It looks like a fluid in the bag & comes in predetermined mixes on the calorie, protein & fibre content. Varieties are available with different contents, including a soya, dairy free version. More info at www.nutricia.com You will need one of their pumps & giving sets to work the system. We have a pump from them on loan. They may be willing to send samples. They seem to be international fro
their website. I hope this can give you a lead

Sorry Astro to hear of your mums diagnosis. To answer your question on the post. I believe it is possible to die of mnd before having limbs affected. I know of one woman who walked until the day she died. But it seems more common to have the motor neurons gradually eaten away in various areas. However, everyones progression is different & there's no predicting.

No second opinion. And we are still waiting to get the appt for the neurologist for December sometime. The District Nurse has been visiting to help her with her Peg, but no other support. It difficult without a diagnosis I guess. My stepfather is in denial, so its difficult to mention it without upsetting him, mum and I seem to be more realistic. Its great you are having fun with your Mum making the book. Not something my mother would be interested in im afraid. Keep in touch.

Wow, I can't believe it's taking so long for diagnosis. mum was diagnosed within a few weeks. did you ever get the 2nd opinion?
Just last week Mum was visited by the occupational therapist & she was had a whole heap of equipment delivered - walker, wheelchair, toilet & shower seats. bed coming in a week.
She has also had quotes for the bathroom to be remodeled & ramps to be built. $8k will be funded.
Mum has also had a visit with a writer who will make a book on her life story - this is done thru hospice. we've had fun looking thru the old photo's
Hope your Mum is also getting the support she needs. take care.

Yes mum is managing ok with the new peg now the initial infection has cleared up. She is tolerating small light meals also. She does not have any limb weakness that we know of, so I'm not really sure why she is falling over. My mother is 72 but has been very fit and active. We are still waiting for a proper diagnosis~ Enjoy every moment Kiwigirl. She is very very young, and yes its so sad. All the best, thinking of you.

Hi Astro. Did your Mum have a peg put in ? How is she finding it? Hope it's helping her to keep weight on.
My Mum has also been falling over. she tripped on the pavement & smashed her glasses into her face & had a black eye. she also fell down her internal stairs & she she's has a couple of other falls. Her physio is organizing her a walking frame.
She seems to be deteriorating so fast. Dad has to help her in the shower & getting dressed. heaps of other stuff she needs help with. 3 months ago she was fine. So sad.
How old is your Mum? Mine is 59.
We had a great family night out in the weekend. Treasure those moments.
Hope you get to see your Mum soon.

She has a computer but is not keen on writing much. She has also stopped typing into her speaking machine. Yesterday while venturing outside to look at her garden she fell over twice!! I'm not sure why? Fatigue her husband tells me. But she slid off the couch last week, so i am wondering if something else is going on.

Glad pain is going. Infection is not nice that's for sure. Sorry for the frustration - I certainly know what you mean. Is she good with email?

Hi Jelly cat, pain was most likely due to the infection. She seems to be managing ok. Can only catch up over the phone and then not directly of course as she cant speak.!! so frustrating. Will see her in a few weeks. yah. Hope all good with you and your mum too. Take care

Glad to hear your mum is home. Hope the pain is subsiding and that you are getting used to the new normal. I remember being a bit overwhelmed by all that went with having a tube at first, then things settled. Hope they will for you too

Hi Jellycat and Kiwigirl. Yes I find it upsetting too reading the posts, then tend to stay away for a few days. I dont know any of her friends where she lives, and its only up to her husband to keep me posted. He has been mentioning she is very down. Either no energy for anything, or depression, and who could blame her. This of course is upsetting him, she refuses to leave the house for anything other than grocery shopping. Hope to visit next weekend, yah. thanks so much for your support. Take Care lovely people.

How hard it must be to have her at a distance. Has she friends close by who can reassure you that they are keeping an eye on her? Sorry to hear she is choking on most things but I do know what that is like. Distressing isn't it. We tried thickener too but once we got to custard consistency fluids we gave up. Tastes foul anyway! Hang in there.