A DEDICATION FROM MUMMA

For my daughter Kim and my adopted beloved son Don
Life can be hard but they soldier on
In a marriage spanning thirty plus years
They’ve shared laughter, love, strife and tears
Many times their bond has stretched too thin
But they always faced their issues and let the love back in
Four lovely children all now grown
Are chastened to hear that Dad sounds so different when they phone
My thoughts go back to our New Zealand Whanau times
Remember my home-made pizza on Saturday nights?
Or when Kim and I indulged in a few Jim Beams
I sang in Spanish – oh yeah? – in my dreams!
The fun times we shared are too many to measure
And these happy memories are always ours to treasure
And now, Kim and Don, we wish your burden could be less
But can that ever happen with ALS?

Lots of Love always, Mumma/Nana

Stu from ALS GUARDIAN ANGELS is an angel update:

I just talked with STU from ALS GUARDIAN ANGELS and I am floored,humbled,tears are streaming down my face because he understood, he wanted to help and most importantly he understood what ALS is what ALS does and what ALS does to you financially, he is a "real" angel on earth, yes they exist and Stu is one of them, please DONATE to ALS ANGELS THE WORK THEY DO IS REMARKABLE HERE IS THE LINK: http://alsguardianangels.com/

The Struggles Have Begun.......

I am getting more frustrated as the days go by and need feedback please...... Our first hurdle is due to my hours being cut in the past month and medical bills ( not covered by our insurance ) and travel costs we are 1 week away from losing everything we own in a storage unit in TX they will auction it off in Feb, my husband was going to drive down to TX from the east coast to get our things in Dec but now this would be a difficult task for him, I don't care about the material things what upsets us the most is all our family photo's/memories are in that unit, the very thing of comfort for a person who is ill is to have cherished memories, I am mortified! We live in a studio 1 brm apt with steep stairs & a bathroom you could not swing a cat in ( we would never have leased this apt if we had known my hubby would be diagnosed with als) is there anyone we could contact to help us find a place to rent that is more adaptable? we live in the New Hampshire. I sleep on a mattress on the floor ( no bed ) and he sleeps on a couch as breathing laying down is uncomfortable for him, this has all happened in the last 4 weeks due to ALS creeping into our lives and it sucks, if anyone knows of anyone who could help us save everything we own we would sure appreciate it.IS THIS REALLY HAPPENING?

UPDATE STU FROM ALS ANGELS CAME TO OUR RESCUE, WE ARE SO THANKFUL!

Another day In Paradise "NOT"

Don and I finally got a precious day off together but it did not start of well. "Again" we had no hot water or heat in -24 degree weather, I  have a cold virus and due to an impending snow storm this week we have another week of delay in seeing our only support person by way of the ALS New England chapter.

So we hunkered down for the day filling out Veterans disability forms N.B. if you qualify for VA  disability benefits because you have ALS you do not have to be out of a job/not working to receive a benefit however the SSDI is a bit different and can take up to 5 months or more to be processed, good thing is that a lot can now be done online  https://secure.ssa.gov/apps6z/iClaim/dib, we will update you about all this boring stuff as we go through all the red tape.

Home Alone

Today I am home alone with my thoughts & my mind is a cesspool of emotions that I cannot stop, I liken it to an out of control train that will not slow down and eventually will turn a sharp corner and come off the tracks.


Don had family visit him yesterday & it was so good for him, I could see some of the old Don and it was wonderful to see the sparkle in his eyes, we all went out for a great dinner & at one stage he started to choke on some food and it brought me back to reality & I could not finish my meal.


His sister gave him a cell phone ( we have always used a net10 reload phone ) and it is like a new toy which also takes photo's so when we can understand how this process works we will load some photo's onto this blog :0)

DAY OF DON"S ALS DX :0( WTF !!!!!

December the 16th 2010, Are dates important? usually we look at dates as a reminder of a loved ones birthday or anniversary or perhaps just something as simple as when your next payday is, December 16th 2010 my husband was told he had probable Lou Gehrig's disease and our lives changed from that date.

January the 14th 2011 the day my husband was definitively diagnosed with Lou Gehrig's I felt the pit of my stomach falling, my inner soul cried out "no please not my Don, not my best friend, not my everything", why is this happening? this cannot be so! but it is and everything feels so surreal and painful like an open wound constantly having acid poured into it.

I keep looking at him and see his struggle to speak and cannot imagine that one day he will not speak at all, I cannot imagine that one day he will not be able to kiss me or hug me, I already miss his laugh, Lou Gehrig's has already taken away his ability to laugh, slowly Lou Gehrig's disease will take away something from him however he will be left with a clear mind to remind him of this fact each day.

This is our journey into the unknown of ALS, it is like going into a dark cold cave and you are desperate to find a glimmer of light of hope of solace and warmth, we grip our hands and minds tightly just as we always have and walk forward together.