Saturday, July 2, 2016

If I am devastated...how must she feel??!

I belong to a number of 'groups' as I go about living my life. One group that I regularly socialize with consists of women whose children were at school with my two girls. One of these ladies has been experiencing problems with her voice over the last 12 months or so...it was as though she had permanent laryngitis. She has been to a number of ENT specialists, but tests revealed nothing. My friend also noticed that one of her legs 'seemed heavy' and her usual brisk walk to the station each morning was becoming more difficult. 
Another lady in this group is a radiographer and our friend's problems intrigued her. This lady suggested  that our friend ask her GP to refer her for neurological tests as the ENT specialists had had no answers. Our friend had to insist she be sent for these tests as her GP thought it was a waste of time...😒
Just under a month ago, our friend got the results of her tests. It was devastating news...she has Motor Neurone Disease. ( also known as Lou Gehrig's Disease and ALS, depending on what country you live in) 
'Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die.'
The prognosis is not very good I'm afraid. Our friend got this diagnosis a few days before she was due to fly overseas to visit her only child. The specialist told her to have her holiday, so that is where she is at present. When she comes home, she plans to move to a complex with various levels of accomodation. She will first go to an independent living townhouse and then as her need for care arises, she will still be able to be in the same complex. Our group are discussing how we can help...and reading everything we can about this terrible disease. 

During this last month, I've found that attending the gatherings of the other groups I belong to, has been great in lifting my spirits...
Knitting group at Albany Creek..
Show and Tell at Sisters of Stitch at Chermside Library...
Show and Tell at Sunday Stitchers at Coomera...
One think that 'struck me' when I heard of my friend's illness...in all the years I've known her, she has ordered fruit toast without butter as she felt butter or margarine should be avoided because they are fat...so she ate dry toast. 

at

17 comments:

  1. Nanna ChelJuly 2, 2016 at 3:10 PM

    So sorry to hear about your friend. A work colleague died from the same illness a few years ago and it is particularly nasty due to the gradual loss of mobility. Thank goodness she has friends and family to support her at this difficult time for you all.

    ReplyDelete
  2. AnonymousJuly 2, 2016 at 3:38 PM

    Hi Maria i am so sorry to hear of your friends bad news,it goes to show that we need to enjoy life ,i dont know whether to laugh or cry about the toast,hope your day is a good one my friend ...

    ReplyDelete
  3. SusanJuly 2, 2016 at 4:12 PM

    So sad and I imagine the worst part is that you know that its a gradual decline. Channel 7 had a story about this on their Sunday night program recently, focused on an ex AFL player - Neale Daniher...could be worth seeing if you can watch it on line.
    Goes to show our craft (or other) groups are good for more than just crafting. She will need support from a lot of people.

    ReplyDelete
  4. VireyaJuly 2, 2016 at 5:03 PM

    So much lovely creativity at those show and tells!

    There are so many things that can go wrong with our bodies, sometimes it is amazing how most of us manage to chug along as well as we do. Best wishes to your friend with MND.

    ReplyDelete
  5. JackieJuly 2, 2016 at 7:53 PM

    So sorry to hear this about your friend. ALS is a terrible disease.

    God bless.

    ReplyDelete
  6. Bev CJuly 2, 2016 at 8:30 PM

    Hello Maria,

    Love and prayers to your friend. So glad she went and got things checked out though the diagnosis is awful at least she can plan. Lovely photo's of your gatherings.

    Happy days.
    Bev.

    ReplyDelete
  7. doodles n daydreamsJuly 2, 2016 at 9:22 PM

    How sad, Maria. Motor neuron is a horrible disease. Thank goodness for your radiography friend suggesting she go for neurological tests. It is easy sometimes to just say nothing. At least she now knows what she is dealing with and is able to make arrangements.

    Diana

    ReplyDelete
  8. margaretJuly 2, 2016 at 9:33 PM

    Motor neuron is a horrible illness that has no cure, your poor friend, good to read she will have support when she moves into the new home and hope that is progresses at a slow speed.I know you and her friends will be supporting her and doing all they can to help.

    ReplyDelete
  9. angelaJuly 3, 2016 at 12:46 AM

    I'm so sorry to hear about your friend. Sending you hugs

    ReplyDelete
  10. FlowerLady LorraineJuly 3, 2016 at 2:52 AM

    I am so sorry about your friend.

    May she feel love surrounding her.

    FlowerLady

    ReplyDelete
  11. MariaJuly 3, 2016 at 5:13 AM

    So sad to read of your friends terrible illness. It's great she has lovely friends to support her....does make us realise not to take things for granted...

    ReplyDelete
  12. AntheaJuly 3, 2016 at 7:00 AM

    Hi Maria
    Oh that is just terrible news for your friend... I'm sure she has a good network of support around her... the cruel thing about MND & so many other diseases is that we can do the best we can for our bodies & sometimes it still isn't enough to protect ourselves, it's a bugger.

    ReplyDelete
  13. MizumatteJuly 3, 2016 at 1:26 PM

    I'm so sorry for your friend, my cousin had ALS, good she could travel to see her child. may God bless her Jaana

    ReplyDelete
  14. LinJuly 3, 2016 at 2:04 PM

    So sorry to read about your friend Maria but glad she pushed for the tests, at least she can plan now rather than keep wondering what is wrong. So sad for you too and sending you both love and hugs. xx

    ReplyDelete
  15. Carol- Beads and BirdsJuly 4, 2016 at 5:30 AM

    I get so upset when I hear a Doctor just ignores a patient's concerns. I am blessed to have a great doc...which I never take for granted. it's always so sad to hear that a friend is ill. I have no words.
    xx, Carol

    ReplyDelete
  16. diane bJuly 16, 2016 at 11:52 PM

    That sure is a sad tale. I'm glad her friend suggested she have the tests done. It sure is an awful illness. One of our friends from the wine club suffered that it was awful watching him deteriorate. Hopefully your other groups will lift your spirits.

    ReplyDelete
  17. AnonymousJuly 23, 2016 at 6:03 PM

    Oh, what a struggle to live with that diagnosis. I'm so sorry this happened to her. I guess it's good that her friend finally suggested another path and the GP eventually agreed. Next time he'll pay better attention. The only thing is, I don't think it matters when you discover this one, there's just no cure. From what I know, which isn't an awful lot, being her friend and visiting even as the deterioration gets worse is all you can do. Sometimes it's enough to sit and hold someone's hand and let them know you care. I hope hers progresses slowly.

    ReplyDelete

I really appreciate your comments! In fact I love them!