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affected

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Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
of course there are actually hundreds, but these are the top 3 things I miss:

1. Free and easy conversation. With bulbar onset my man who used to talk constantly has of course become so quiet and conversation is stilted as he tries to find easy words to say and I have to ask him to repeat at least half of what he says now.

2. Making project plans. We were constantly coming up with hair-brained projects for bigger better gardens, pavers to make new paths or some such thing. His ability to think so creatively and find a way to make anything work made these projects hilarious and so fulfilling. I hate that we can't do any more big projects together.

3. Laughing. With the bulbar effect, we have to be so careful about laughing as he aspirates so easily, especially if he gets to laughing too hard and with the emotional lability this is even more of a threat as if he starts to laugh it can be hard for him to stop. Laughter was one of the worst things to be taken from us. We do still laugh a bit, but I'm always having to hold back and so is he.

3 things I am grateful for:

1. He still has a sense of humour

2. I met him for that first coffee date

3. Each and every day
 
regarding conversation.....................my grown children say the thing they miss the most is the sound of their mother's voice. They regret they have no recordings of her voice on videos so they could keep for memory.

The younger grandkids have never heard my wife speak.
 
3 things I miss:

1. kissing
2. vacationing and relaxing together
3. dreaming of the future

3 things I am grateful for:

1. his love
2. his smile
3. time together
 
It is approaching autumn in Connecticut. We miss going to the fairs. Missed last years. We would go to just one every year. Rotate fairs. that way you never get bored. We would just eat our way from one end to the other. Maybe if that chair gets here soon we can make Durham. Some steep hills at that one but my pals can't wait to give it a try.
Three things: fried dough, sausage and pepper grinder and root beer floats! :)

PS so lucky we may be still able to do do some fun things once we get transport in place.
 
Three things I miss

1) freedom
2) walking bare feet
3) spontaneity


Three things I'm grateful for:

1) freedom
2) running
3) today
 
3 things I miss:

1) my job/being able to work
2) my independence
3) cooking for my family


3 things I'm grateful for:

1) My family
2) I can still eat! :smile:
3) Today
 
3 things I miss:

1) the happy sound of my husband's voice
2) his laugh
3) happiness in his eyes

3 things I'm grateful for:

1) cuddling on the couch
2) that special place on my husband's shoulder that only my head fits
3) each and every moment together
 
3 things I miss:

1) drinking margaritas and staying up all night playing cards with my stepdad
2) his smile
3) the good laughs we used to have

3 things I am grateful for:

1) he is no longer suffering
2) the good memories
3) he went the day before what would have been my mom's birthday, I hope he took her for drinks and dancing to celebrate on the other side :)
 
My definition of ALS is Another Life Situation. We all got em but my sweetheart and I decided to face it head on. As long as he can, we are trying to remain as normal as possible and start planning for what's ahead. We are both medical professionals but ALS is the great equalizer.

I have begun the research on lifting choices, power wheelchairs and whether I can sell or trade-in our truck for a van. This research has been interesting and a bit overwhelming. But I have to plug along. This time of the year is so wonderful but I believe Spring will be different for enjoyment.

The wheelchair will be covered by our insurance but the van was another thing. I checked on several handicap vans and was shocked at the prices.
 
Last edited by a moderator:
I think all you are doing is advertising for a handicap van. I may be wrong but this is 3rd post about this company selling vans. If I am wrong sorry, but if I am not, shame on you.
 
especially hijacking this lovely thread where we are talking of what we miss about our loved ones, not equipment :(
 
3 things I miss
1) Tim pulling me into his arms and nuzzling my neck.
2) Jumping into the car at the spur of the moment and taking a road trip.
3) Getting up in the morning and doing my own thing.

3 things I am thankful for
1) Tim's kisses.
2) Tim's shining spirit
3) The love of God.
 
Thank you for sharing Tillie. You're right. We have to grieve at times but we must also be thankful! (I'm glad I met my husband for on our first date too!)

Miss:
1. His music.. He would softly pick his guitar to encourage me while I painted. He can't play and I'm no longer interested in painting.
2. The way his hands felt after a long day of working. Strong, callused and rough but so loving.
3. Our long walks

Grateful for:
1. His wit.
2. That we think alike. So even if I can't understand him verbally, I usually know what he's saying. Sometimes we laugh at how spot on we are. :)
3. Our 5 month old baby girl. She cheers us up on our worst days.. She could care less about ALS and makes us forget too, even if just for a brief moment.
 
so beautiful Kate

I try to think mostly of the things I'm grateful for, but sometimes we need to acknowledge what we miss too. Always balance with the good though.

I know I will come out of this a better person simply for having met such a wonderful man, no matter what this disease does to him, and I will always hold that in my heart.
 
Omg I was just thinking the same thing this morning I had a dream my mom hugged me and I was so excited to hear her voice but whwn she opened her mouth no voice. I woke up and I thought how much I missed her voice and how my five year old daughter has never heard my mom speak.
 
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