In disbelief

[patrick123]

Hi Donna,
Welcome to our little and crazy group. ALS is something none of us ever to hear. When I was diagnosed I started writing poetry which I never did before. I think it was always there. But I find that it helps center me. And gives expression to my life. I wrote this a few months after diagnosis.

Behind The Mask

Behind the mask lays the fear of the unknown.
The hidden truth of reality.
The sadness in my eyes.
The tears that tell the truth.

Behind the mask I am revealed.
Time becomes a blur.
Moments and days pass to fast.
Time does not stand still.

Behind the mask I wish for hope.
For better days that I can touch.
For a voice that can be heard.
For a dream to come true.

Behind the mask one can see all.
The fear I must battle.
The courage I must find.
The strength I must believe in.

Behind the mask there is me.

Patrick

 

[MaxEidswick]

That's a good one Patrick!

 

[cheerleader]

Oh Patrick, that was absolutely beautiful! As you spoke of all the emotions you are facing, it struck my heart thinking of my husband's passing last week. The fear, the courage, the sadness- all the things he had in his life, like you. Now he is free from all this. Thank you for sharing this and reminding me of why I should celebrate his freedom now. Stay strong, and full of courage, dear Patrick. Donna

 

[fishfin]

awesome poem Patrick, thank you

 

[pearshoot]

Some of diann is good and may help you....alsuntangled is against anything not chemicaly produced

 

[fishfin]

I can't figure out way we have been laughing more together lately, maybe we are just holding each other more then ever

 

[affected]

Laughing together is a great way to move forward.

Some people find that they learn a lot about what was important in life and in their relationships, and these things give them great strength together.

I hope that you both have this experience. You need it to fall back on when things are tough, but if you can laugh together now, you will build the ability to laugh together all the way.

I'm so smiling, thanks for sharing that!

 

[fishfin]

how do you guys deal with this, as my love starts to move slower and gets tired faster and she can't shop with me like we used to it's like getting hit with a brick. I don't like this, it sucks. sorry I know you guys have troubles like me but I'm lost

 

[Atsugi]

how do you guys deal with this, as my love starts to move slower and gets tired faster and she can't shop with me like we used to it's like getting hit with a brick. I don't like this, it sucks. sorry I know you guys have troubles like me but I'm lost

It's sad, of course. I dealt with it by becoming incredibly busy, ensuring my PALS had the highest possible QOL and the best of care.

I posted our details frequently on this forum, and lived one day at a time. Eventually, for the good of my family, I began to plan for a life without my PALS. There were many things to prepare for, and many legal/financial issues, so I stayed busy.

In this way, I was not lost.

Also, I never left my PALS side, as much as possible. She had such a positive attitude that the disease sucked less.

 

[affected]

It is very hard fishfin, I won't sugar coat any of it.

I think I spent a lot of my time being very busy, like Mike, just looking after Chris. At times it would suddenly really hit me just what was happening to his body and it would be like a total shock all over again.

I took antidepressants, and you may need to consider talking to your doctor about it. Before I started them I felt like I was just screaming inside all the time. They did stop that for me. I still felt every one of the emotions, but I could keep my head above the water.

That first month or two was really hard with the reality sinking in, the lack of hope of a treatment that would fix this. Somehow you kind of rise above that first shock and get on with what you need to do for the one you love. I had been in such denial in the 6 months before diagnosis that this would be anything like ALS. I was sure they would find some weird something that would be fixed, or at least could be helped and lived with. In my heart I knew in the last month or two before that this was terribly serious, but I still held to a lot of denial. So I remember the feeling of that denial being shattered and having to face up to what I was watching decline truly meant.

Leaning on others here is really important. Every one of us CALS feels everything you are going through. We deal with it slightly differently, and that is one of the powerful things here -- you won't be told just one way of dealing with anything, you will get a range and you can work out from the replies what might work for you.

What I love most about this forum is that we have both PALS and CALS here. I can't tell you how much I was supported from talking with other PALS as well as the advice from the CALS.

 

[cheerleader]

Fish fin, your life is going to continue to change. As my pals became increasingly tired and unable to swallow regular food, we stopped eating out, going to shows, spent only short times at parties, etc. But what we got instead was a lot of quality time together, talking about our lives together, our family, planning for what was coming both with the ALS and with what I would have to know for survival without him, discussing our deeply held beliefs. Those two years were two of the best of our marriage as the outside busy lives we had previously led were traded for more intimate time together. As I had to help him do some of the simple things, like putting his arms into his shirt, buttoning it, drying his body after a shower, lotioning him, etc. there was a beautiful sense of closeness and "oneness" that came with it. Like Tillie, won't sugar coat this! It was hard watching him die before my eyes- but I wouldn't trade those lovely moments of sharing and caring that were the reward of our time spent together. Hang in there- you still have a lot of living to do together, it will just be more meaningful as you learn to treasure what you DO have. Hugs. Donna

 

[fishfin]

wow, thank you guys so much

 

[fishfin]

Donna fell this morning and she went by ambulance to the ER, sprained ankle, sprained foot and twisted her leg and lots of pain. I hope all you guys had a better day. And Happy Thanksgiving. fishfin

 

[affected]

DAMMIT did we neglect to make this clear in our early posts to you guys?

DO NOT FALL - DO NOT TAKE RISKS THAT WILL RESULT IN A FALL!

It will hasten progression, or at least healing won't be complete as the nerves supplying the damaged muscles are failing.

This is really for Donna to read. Too often the CALS are advising their PALS shouldn't you use this aid, shouldn't we do it this way, blah blah and my Chris favourite saying was "I'm alright". Usually followed closely by the most horrible noises I've ever heard - the should of a human body hitting a hard floor.

Please Donna, take this seriously and lean on your husband to help you and don't take risks. You will only take your quality of life down fast.

So sorry this happened

 

[Janie H]

Hope she got relief from the pain, falls do happen, we have to be careful. I spent Christmas morning last year at the ER.

Janie