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  1. lussybaby
    07-26-2013 11:39 AM - permalink
    Hello my dear
    my name is lussy i was browsing today, so i came across your profile on it seams like some thing touched me, i started having some feelings in me which i have never experience in my life before, that is why i write to you, i will also like to know you the more, and i want you to send an email to my email address so i can give you my picture for you to know whom i am.Here is my email address ( believe we can move from here! Remember the distance or color does not matter but love matters a lot in life) Am waiting for your immediate response i love you with faith and trust. Miss lussy. you can send me your email also pls
  2. astro
    05-06-2011 06:32 AM - permalink
    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
  3. twinmommie72
    04-29-2011 08:54 PM - permalink
    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.
  4. Jellycat
    04-29-2011 03:49 AM - permalink
    So very very sorry to hear your mom has passed. Love to you
  5. Jellycat
    04-10-2011 04:44 AM - permalink
    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 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
  6. Jellycat
    12-16-2010 05:21 AM - permalink
    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.
  7. astro
    11-21-2010 02:33 AM - permalink
    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.
  8. Kiwigirl
    11-20-2010 01:08 PM - permalink
    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.
  9. astro
    11-17-2010 12:19 AM - permalink
    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.
  10. Kiwigirl
    11-15-2010 03:48 AM - permalink
    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.

About Me

  • About astro
    What's your relationship with ALS/MND?
    I am a family member of someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province
    Manukau City
    Needs Assessor for Disablility Funding Agency


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  • Last Activity: 12-05-2012 05:12 AM
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