New CALS - totally broken-hearted

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Thanks MJT.

She is young.

I hope it gives her that foundation too. As well as one of the importance of love and kindness.

Dark humour rules with us too.

I love your mantra also.

My daughter's biggest gripe at the moment is the fact she had to do "stupid" Irish dancing lessons in school this morning.

I take this as a good thing. Normal kiddo complaints = healthy.

Xxx
 
You all are very brave people, my brother is the PALS but the whole family is around to support and that makes it easier for the CALS. There is no amount of advise and support to help initially, your world practically breaks right in front of you but with time and acceptance it gets better. I like how no one sugarcoats things here so this is the right place to be, I pray we will all be alright at last. It was a nightmare for me and still is but I am hopeful
 
Duke is submitting an order for Hospice for my sweet PALS. He is in pain, and we can't get it under control.
 
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Mjt. So sorry about pain. Watching your PALS suffer is horrible, and he needs to be comforted. Thinking of you.
 
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I'm sorry, MJT. I hope with hospice help you'll be able to get his pain under control and give you both some peace and rest.
 
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Oh MJT, only seeing this now. I am so sorry. Sending you lots of love.
 
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Hello, sweet CALS. I'm having a quiet moment, drinking coffee, and watching my dogs sleep. I'm grateful for Hospice and the community here. I hope you all have a joyful day. 🌷
 
Mjt. I am glad you are relaxing for a few minutes.

Tom is in home hospice. We are getting very good support. He is entering a phase of increased pain in his legs. The nurse is making sure he has pain meds that will still enable him to listen to books, hear me speak with him, watch TV and more. But monitoring this new phase of pain is tough.
 
Kathy, We are right there with you. PALS is in pain, and we're on home hospice. Of course, I wouldn't wish for this, but it's comforting to know that someone up the coast from us understands what we are going through. I'm grateful for this forum that connects caregivers.
 
Hello, Amazing CALS!
Reading this thread is like reading my journal - all the excruciating feelings and fears about the future. It took me 18 months to get to a point where I could live in the present and ALS wasn’t part of my every thought.

There was no magic bullet, but a combination of things helped:

1. Be grateful - Write down three things every day; it can be in short phrases or just a couple of words. Pay particular attention to what happened that day so you can be as specific as possible. The reason to write it down is so that in a week or a month you can re-read it and see how many good things are in your life. Practically everyone offers this advice - probably because it really works.

2. Educate yourself - Read up on various aspects of ALS so you will have some background knowledge. The more I learned, the less helpless and more empowered I felt. But don’t doomscroll - if what you’re reading is too upsetting, stop reading it.

3. Simplify your life - Decide what your immediate priorities are and let go of anything that doesn’t fit those priorities. Keep in mind that priorities can change over time.

4. Use all available resources - If you need something, put the word out to trusted friends, family, neighbors, co-workers, etc. You never know who might have what you’re looking for. If your ALS Association has a loan closet, that can be a big help (we got a shower chair and a Hoyer lift to use for as long as we need it).

5. Live in the moment - Worrying about the future steals the joy from today. More trite advice but, again, it works. I remind myself often, “You don’t really know what’s going to happen.” Yeah, I know the odds aren’t in my favor, but I refuse to succumb to those spiraling thoughts.

6. Adapt - It’s not “survival of the fittest,” it’s survival of the ones most able to adapt. Stay ahead of the progression as best you can. This is where your new knowledge comes in handy. For instance, when I noticed my PALS was starting to have trouble holding a plastic glass, I put rubber bands around it so it wouldn’t slide out of his hands. After a while, that wasn’t enough, so I got plastic glasses with a handle. This is a small example, but the point is that there is a solution for just about everything - if you are willing to adapt. (Not saying it’s always easy.)

7. Stay hopeful - This is absolutely impossible to do every minute of every day, but if you can be hopeful 51% of the time, that’s a victory. There has never been a moment like this when ALS has so much attention from researchers, scientists and drug companies. Breakthroughs are on the way. And Dr. Richard Bedlack at Duke’s ALS Clinic tracks reversals. It’s not common, but some people have actually reversed this disease. He’s working to find out how and why this happens.

8. Mow the grass - When you’re mowing a big field or lawn, it can be gratifying to look over your shoulder and see how much progress you’ve made. Acknowledge yourself for how far you’ve come and all that you’ve accomplished.
 
Hey girl, I read your post, I could almost hear your voice. I share these feelings with you, every day, every night and the screaming inside some days dont stop. I shake now, when some things happen....thats new to me. For years, I was made of iron, there wasnt anything this only child, wife, business owner, room mom, little league coach and foster dog mom couldn't handle. But just like the Trade Center towers on 9-11 this Iron Maiden hit the ground too. The struggle is real, your feelings are real and RAW and why we are all going through this, I have no explanation. Im new to this site and will tell you I arrived here crawling. There are good people here, Ive read more posts than I could count, your in safe hands. Im learning here and this is a good thing. Hang on, sending a huge hug.
 
Hi Ann Marie...I was in Littleton MA this week end for my husband's Great Nephew's high school graduation.
It was so sad being there without my husband but I am glad I went. This is a wonderful website. I posted frequently here during our ALS journey. I am hoping you are able to rest and find support here.
 
Sorry to welcome you here Tkral. Your post was very inspiring and spot on!
 
Thank you. I’m glad to have found this forum.
 
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