Our ALS story

I have posted or commented a few times, but wanted to let you know my love and I.

My husband, Bob, was diagnosed in March, the day before his 65th birthday and we were told the standard 2-5 years. He had noticed fasciculations just last December.
Unfortunately, he has progressed very rapidly. He cannot use his arms or legs and is now using the trilogy 24/7.

Since he has chosen not to tube feed or vent, we have brought in hospice.

I am his full time caregiver, which I am happy to do for this wonderful man.

He is a retired police officer, who worked 2 jobs his entire life to raise our 5 children. He worked his other job until April of this year.

Wishing he could have enjoyed some more time to relax before this monster came into our lives.

Thanks for listening.

Joan

Hiya Joan!

Welcome and sorry you have to be here!

My middle son is a cop.

Hi Joan - so sorry to have to welcome you here. My thoughts and prayers are with you.

Hugs,

Sue

Thanks Greg. Our oldest son followed in his Dad's footsteps and is now a detective on the same force he retired from.

They actually worked together for 10 years.

Thank you, Sue!

Welcome Joan - I am sorry this happened to you both and sorry it has progressed so rapidly. May the end be a peaceful one, and you take some comfort in sharing years and life with a great guy.

Oh Joan, welcome!

That is rapid progression. My Chris was also rapid, but not this fast.

The ability to accept as you have, and to honour your husbands wishes is a true testament to love. Not a warm fuzzy, easy kind of love, but the love that comes out of truly having the needs of the other person in the front.

I hope hospice give you both the support they are best able to provide xx

My mom progressed over the course of 8-9 months. There were 2 months that winter that were wickedly fast progression. I'll never forget it...

Lenore, I see that your was husband was very recently diagnosed and will be thinking of you and everyone who has to deal with this devastating disease.

Tillie, I have the greatest admiration for you.
You continually provide support for everyone and are so very helpful. Thank you.

Joan

So sorry to find you here Joan. So sorry that things are moving so fast. We are here for you.

Dear Joan, sorry to hear your ALS story. Bob is lucky to have you. We all wish we'd had more time...I feel like ALS will be a part of us for the rest of our lives. I hope hospice will help both of you.

V

Joan, I am so sad to hear your husband has progressed so quickly. Mine was diagnosed this April and I have seen changes, but not as quickly as you describe. My thoughts and prayers are with you.

Kay

Sorry to hear that things have progressed so fast, Joan. Yours sounds like a great family. We're all happy to take a stab at any questions you may have, and welcome your comments as well.

Best,
Laurie

Joan, although no one can predict how fast it will go, I must say Bob's disease seems to be moving most quickly. My PALS progression was also very rapid, so here's our story, in case you can learn anything from it that will be useful.

My own PALS, Krissy, had her first symptom--a painless fall to the carpet, in Nov 2010. She was diagnosed in Dec, used a cane in Jan, a walker in Feb, and a wheelchair in Mar. Her arms were pretty useless by April. All during this time, we were active, went out to dinner frequently, watched the kids' soccer games, and went to the movies. By July, Krissy was mostly bed-bound, and we had a hospital bed in the living room so that all our lives rotated around her. I put a little bed for me next to her. In August, she needed a letter board and an eye-gaze computer to communicate because her voice was unintelligible. Our kids learned how to do all the caregiving stuff. Even my 13-year-old daughter could feed mom, administer meds, and single-handedly transfer her mom to the toilet using the Hoyer patient lift.

By the middle of August 2011, all her muscles were useless, so we spent a great deal of time attending to even her smallest needs 24/7. Her urine turned cloudy and dark. In the morning on 21st August, her eyes locked forward so there was no possibility of even the simplest communication. That evening, her heart beat its last as I held her hand. She was surrounded by her sisters and brother and other relatives when she passed. Because of the medications, especially morphine, she didn't feel a thing, had no pain or fear.

Right from the beginning, Social Security, Medicare, and the VA were quite responsive. Our hospice nurses were not qualified in anything, so I continued to do most of the care, and once the nurse was able to take care of Krissy, I would get my nap.

When she passed, I called the funeral home and they picked her up in the middle of the night. Insurance paid within 3 weeks, and the state of Florida pays for our kids' college tuition now. A couple of months later, I took my kids and their girlfriends on a European vacation, which was, I think, a really good way to "reset" the family so we could carry on with normal life. That one semester of poor grades and poor attendance impacted the kids' college plans. Neither were accepted to their big name choice, so they now attend State U. Our little family has adjusted very well.

So that's what happened to us. I'm glad it was quick because, frankly, I have no patience or resilience for a long disease.

Rule One: The PALS must not fall. With no arms to defend himself, he will land with full force on his head.

I hope there is something I wrote hear that you will find useful.

Thanks to everyone for your kind words and support.

My heart breaks for anyone dealing with this. I feel fortunate that our children are raised and have been there to help every step of the way.

Mike, thank you so much for sharing your story, even though it must be painful to do so.

Also, thanks to all of the PALS & CALS who are always there to answer questions and provide support.

Hugs & love to all,

Joan