well this is silly but...

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Lenore,

Gentle brief touches and words of encouragement can not be underestimated.

The changing body image is a hard one for us PALS. I was always fit and athletic and (mostly) proud when I looked at myself in the mirror. Now I’m not sure whose body I’m looking at.

Just know that Brian is hurting inside when he thinks about his body and his limitations. Gentle touches and reassurance that you love the man inside go far.

I’ve felt a connection with Brian through many of your posts, especially with both of us being leg onset. Hang in there Lenore.

ALS is a beast. It f&&ks with our emotions.
 
I love my feet massaged. Add to that some THC cream and it almost makes them feel normal.
Lenore, Brian knows how much you love him and so do we.
 
There is actually a thing called "Touch Deprivation"... people who are disabled, use a cane, use walker, in a wheel chair, bed ridden unknowingly endure/miss this. Leaving off a long explanation but in crude words... people have a reluctance to hug, touch, caress or physically embrace someone who doesn't look normal (like themselves). Not all.

It's like when a marriage is in it's waning years and months... of the one still faithful to the end.

Anyway... it' worth reading about.
 
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I really need to expand on my post above being it could be misunderstood. Many diseases cause the one with the disease to unknowingly lose their ability to give or express affection.

Come up and just hug their loved one for no reason, put their arm around, hold hands... all things they used to do. It fades away. It's the other loved one who begins to feel touch deprivation and not recognize that's something missing making them feel even more they are losing the one they love. One of the pieces.

One best example is Alzheimers Disease. Those with other diseases feel defective, expressing affection for no reason, spur of the moment like they used to seems to fade away...

I guess many times it's the caregiver/the other loved one who feels the absence of this unspoken symptom.

Hope I didn't make a mess out of this.
 
Brian shys away from touch, but I do sneak in quit little back touches and hand holds.

His body hurts, pressure of any kind hurts so I am very careful but always kiss hello and goodbye, etc.
 
everyday i sit here thinking that i going to have to get up and do this or that, then reality sinks in and i just sit here realizing that someone will need to do it for me. my body has failed but my mind still feels like i am me. my wife says that she has to keep me in line.

Pete, I cannot stop thinking about your post. I can't imagine how it must feel to be stuck lying there. Selfishly, I wonder what I will feel like if I reach that stage. Regardless, I hope you are getting the emotional support you need. We all feel for you and hope you have unlocked the mental strength you surely must have had as a triathlete.

By the way, wives do have a great talent at keeping us in line...
 
Ted, i think the most imortant thing is to try and find a way to serve those that you love, no matter how limmited your physical or mental assets are. i try each day to find a way to express my love for her.
 
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