CALS Roll call

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Mojoloco

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Joined
May 12, 2015
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31
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Lost a loved one
Diagnosis
01/2013
Country
US
State
Minnesota
City
Anoka
This will be my last check in for a while. Becca hasn't had any fluids for four days. Her heart rate and temperature is rising. A chaplain is coming today and her music therapist comes tomorrow. She will present us with a song she wrote using Beccas thoughts about her life and what is to come. She's at peace now and will find final peace soon.
Mojo
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
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2,659
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Diagnosis
01/2007
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holding your hand as you enter this difficult time.. know that all of us are with you in spirit
 

affected

Guru status reached
Joined
Apr 26, 2013
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12,768
Reason
Lost a loved one
Diagnosis
05/2013
Country
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lala land
Focusing on Becca now is your priority. We can hold your hand and send you all our love and strength in the meantime.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>holding your hand as you enter this difficult time.. know that all of us are with you in spirit

Ditto that!
 

affected

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Messages
12,768
Reason
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Diagnosis
05/2013
Country
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State
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lala land
I know I always seem early but it is Wednesday morning for me.

I've had shocking internet connection the past 2 days, sometimes no connection for hours in a row - nearly drove me bonkers! Hoping the mobile towers (rural Australian connections are dodgy at best) are all back to capacity today!
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
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Diagnosis
10/2014
Country
Aus
State
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City
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Hi all, up in Perth at the moment, all is well, BJ is happy so that makes me happy, lots of hugs happening. Love to you all.
Gem
 

smoochiegal

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Joined
Jan 3, 2015
Messages
87
Reason
Lost a loved one
Diagnosis
08/2014
Country
CA
State
Ontario
City
Otonabee
My dear friends...
Just a quick note to say that I am saying prayers for all of you today.
For strength, for peace, for love, and maybe even a little bit of sleep..
Huge hugs to you all.
OX Cheryl
 

affected

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Hope Perth is great Gem.
Cheryl, great to see you :)

I don't feel good when the CALS go quiet ...

Hands up :)
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
Mojo, thoughts are with you through this most difficult time. My heart breaks when I consider what you are facing.

Thinking of all you CALS & PALS and wishing you strength, peace and sleep in whatever stage you are in.

We're hanging in there. My PALS is in good spirits and doesn't seem to be progressing any faster. I managed to get a "before" & "after" video with his first MMJ experience from my phone to my FB account (only I can see it for now). Can anyone tell me how to post that here? (Warning: On a 0-10 techno-savvy scale, I'm a 2 at best. :() The change was pretty profound.

I'm especially tired today. Packing for another trip. Feels like we just got home from the last one and I'm not caught up with everything that needs doing after being gone nearly a month. I shouldn't complain, though. I feel so blessed we can do it, and this time we'll be with family and friends, including newly engaged son and future DIL. And we'll be celebrating our 30th anniversary. I'd better get to work now--I'll sleep on the ship. :) Hugs to all!
 

affected

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Joined
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Reason
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Diagnosis
05/2013
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Mostly I use you tube - I do upload some really short koala vids directly to fb.

But here you would have to you tube them first.
If you can give me access to the video on fb I can you tube it for you?
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
Back home again, what a hectic week it was. Monday the 2 1/2 hour dive up and drop BJ off at his mums, pick up 2 of my sisters to go and pack up my eldest sisters clothes as they were distressing my brother inlaw, got back to m inlaws at 6 .30pm, Tuesday, drop m inlaw and BJ of at hospital for m inlaw to have heart monitor fitted and then up to Perth for a MND carers lunch, then off to take m inlaws cat to be put down as he was very unwell, Wednesday m inlaw back to hospital to have monitor removed and the off to find pants for BJ to wear to funeral as his normal pants no longer fit due to tummy muscles not holding his gut in anymore but couldn't find any to fit, then 2 sisters came over to discuss our cruise in October.
Thursday we take m inlaw up to the other side of Perth to visit a cousin who also has MND , had a lovely day but again didn't get home until after 6 pm. Friday was my Birthday and my sisters funeral, we had a family brunch, then afternoon funeral, wake, then out to dinner to celebrate Birthday and got home to m inlaws at 9 pm, Saturday up and car packed by 8 am to drive home and share a lunch with some friends we hadn't seen in many years. So now it's catch up time while soaking in the bath.
Hug and love to you all
Gem
 

Mojoloco

Active member
Joined
May 12, 2015
Messages
31
Reason
Lost a loved one
Diagnosis
01/2013
Country
US
State
Minnesota
City
Anoka
Gembead- What an incredible amount of energy you must have! All of us know the toll that this takes much less everything else that is happening in your life.

Becca is still with us. I don't know how she can be doing what she is doing. Today is day eleven without any water. This is really taking a toll on her parents. Her mom got sick Monday, we called an ambulance but it turned out to be slight pneumonia and stress. We don't want to lose her but we all need peace.
She has always said that in heaven we could find her in the meadow playing with the dogs.
She will be there soon. Mojo
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
My sister was struggling with leaving as she said she didn't know how to get there
I wish Becca a peaceful passing very soon, stay strong Mojo
Hugs Gem
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,768
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Gem - I'm totally exhausted reading what you did in a single week! You just became my hero indeed!

So sorry it is taking so long mojo, sadly sometimes it is that way as she is hanging on hard.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
whew Gem, I am exhausted reading about your day! Mojo, hope it is soon for your becca.

what is going on here with me? holy mackerel, a lot. I can't even process it all on so many levels....

but with my sweet man, I don't know. I feel like we are in the last months actually. I can hardly believe it...but I just don't see how he could still be here at Christmas. not sad about it, not scared, just want it to be easy on him. tense--waiting. I told my sister in law last week that I could here the hoof beats of death coming.

I am at peace with his coming death, and feel no guilt or regret because I have loved him well. but when I cast my mind far ahead to the future without him--it is hard to imagine and pain shoots thru my heart. what a life we have all had my friends...
 
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