Thinking of Others

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beauty4everyone

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Joined
Jul 5, 2018
Messages
264
Reason
PALS
Diagnosis
04/2018
Country
US
State
GA
City
Someplace
Receiving confirmation of ALS creates feelings of shock, fear (or terror) and great sadness.

It's like standing in a dim hallway staring into a pitch black room. We need to enter, but fearing the anticipated, unknown potential dangers lurking inside, keeps us rooted in place.

The longer we stand still, not knowing, the greater our fear and immobility becomes.

It requires great strength to step forward and reach out.
Turning on the light gives us power. Power to prepare rationally for the challenges that come. To attempt to be one step ahead or at least, break even. Courage to live each day, one day at a time.

I enjoy the movie "Galaxy Quest". A satire on science fiction space shows. In it the "hero" says,
"Never give in!
Never surrender!
If you fall behind, run faster!
Rise up against the odds!

May you find courage and strength sufficient unto this day.
Tomorrow we begin again!
May Blessings abound -
 
Hi Beauty,

Happy to meet you. Sorry for the reason we've met.

It is a shock. We're here to help each other face each new day.
One of my favorite songs starts, "There's beauty in our brokenness."

May blessings abound indeed!
 
Thank for for you reading my post. I understand how challenging it is to try to stay positive in the face of such an illness. Although early in my infirmities, I try to focus on the things I still can do - not what I cannot. I try to meet each day as it comes.

I don't know the current difficulties your loved one is encountering. However, there are some things I've encountered that may be helpful for others to know:

1. A ROLLATOR walking aid with seat and fabric "basket" underneath is most helpful. Get one early. Medicare will pay with a doctor's recommendation (except for the basket: about $50.00 extra). Without Medicare: check local medical supply stores, sometimes they sell used. Check: Goodwill, Salvation Army, friends or church members, newspaper sales, etc. COPY OFF AND KEEP THE CODE FOR IDENTIFICATION.

Mine's RED so I can find it easily. Attach a leather or soft luggage tag with your name & phone number on it to the Rollator. At a dinner, someone thought mine was theirs. Fasten another tag's "belt" to the other side. Attach a carabiner clip. Use it to hold a drink bottle having a loop on top. Useful when basket filled with other stuff. OR purchase a cup holder.

2. If your legs are affected, so that leverage for getting up is difficult, use Rollator to sit on when dining, at events, etc.

3. Potty chair that has arm rests, stands on floor and can be used bedside is very helpful. Check businesses as above, especially Goodwill or Sal's. We purchased (Goodwill) two with all the insert pieces: $6 and $9 dollars. Latter one had original wrapping on it.

4. Bath necessities within easy reach before bathing. Beach towels, can be more absorbent than regular: less weight, too.
5. Bedroom slippers that fit firmly to keep from slipping off and tripping you. Athletic socks keep "numbish" feet warm.
6. Men's pajama bottoms from Walmart, in neutral colors or designs are easy to get on and off. My gray ones with small black/white squares, with black or gray knit top, go from bed to shopping on day's I don't feel like changing. Mine are very soft, gentle on the skin, wash easily and don't wrinkle. With a dressy, plain gray top, and jewelry, I've worn them to church.
5. For me, suddenly falling over came out of nowhere - two occasions in public places!! DON'T BE EMBARRASSED! YOU CAN'T HELP IT. IT'S NOT YOUR FAULT. I felt as if my brain signaled a total loss of center of gravity in my body. Disengaged from balancing, I immediately fell backward, like a tree hewn at the roots without any capacity to recover. If you start having such feelings, BE VERY CAREFUL! Consider not raising your head suddenly, looking straight up, or letting go of your "Rolly" or person walking with you. BE SAFE. Worrying whether you look old using a walking aid or assistance, has no place in your life. SAFETY and WELL BEING are first priority.
6. We all were independent people - coming, going, working, doing. We still WANT to be independent. and we can, as much as possible. However, If you EVER FEEL UNSURE about standing, walking, going up or down stairs, etc., LISTEN TO YOUR FEELINGS. NOT WHAT YOU WANT TO DO. Your body is telling you something important to keep you safe. Example: Clinging to the doorjambs, wanting to exit down the front stoop using my "Rollie" I suddenly felt "odd", like above. My family said I could do it. I knew I could not. I knew it would be dangerous. I exited through the garage instead.

Hopefully, sharing my experiences and thoughts will help someone else new to these challenges. I welcome your sharing helpful hints. I am still learning, too.
May you find something beautiful to lift your spirits today and May Blessings abound
 
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