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there is no such thing as ..."too early"--when it comes to ALS.
Do you have any idea how ---FAST --ALS progresses?
Better to be forewarned than caught off guard.
And that exactly was my intent. A day can mean a big difference in the life of ALS. I was not intending to Elston to give me a hand slapping that this is only to be about Cyn, it is, the intent was to help her see there are so many invaluable resources out there & to not rely in just one source to guide them through this.
No one told us about adaptive aides, my history of working in healthcare taught me there are all sorts if tools that can be repurposed for ALS. No one told my brother about the disability available to all veterans (war or peacetime) until his last 9mo! It was me that pushed him to get his Medicare app done, he thought he had to wait until he was done working then wait 5mo.
Also, most think that a terminal illness has to always be sad & morbid. It doesn't. You can have fun, you can make fun of it, you can do whatever your comfortable with. You can chose your own path. 99% of my brothers illness we were all happy & laughing & teasing him. It doesn't always have to be tears. When there are tears, that is ok too. People only remember sadness usually, they unforgettable it's ok to laugh and cry but especially laugh.
Elston I am sure was just trying to protect Cyn but if he doesn't know this disease then it's a big misguided though very well intended. I've been through being primary caregiver for three people with different cancers, it was NOTHING like ALS. ALS has so many more components & evil twists.
If she can't be strong enough to read through the posts & process information to learn from then she is in for a longer painful road than it needs to be, she will lose out on valuable moments from the extra stress. And there isn't such a thing as too much information with this disease, it's so different from person to person (look at Stephen hawking - 22yrs with the disease), each journey is different but how it's approached is really the same.
Good luck. I only wish heartfelt love & blessings to those going through life with ALS pushing its way into your journey.
Instead of watching someone you love die a little at a time, watch them live. No one dies a little at a time, they live.
When those closest to them say they watch them die at little at a time, that takes away something from both.
There is always some water in the glass until it is completely empty.
So incredibly well said. It's exactly why I said to live for today & if today was a rough day, then learn from it so to make tomorrow a good day. Enjoy ever bit of laughter heard, soak it in & at the same time accept all hugs, they help too.
So, what did you do with that beautiful blue sky day that you had? Hope you got out in to the sunshine a little instead of just doing things around the house. Sunshine is very good for a lot of people and can lift up spirits. (I prefer cold, rainy days, I get a lot of energy from days like that. But, then, no one said I was normal. (Except me.))
Tomorrow begins my weekend. I love having Mondays off. When I lived in Miami and had Mondays off, I would purposely wake up early just to turn on the news and watch the traffic cams. Something about seeing all of those people stuck in horrible rush hour traffic whilst I lounged around in bed made it all that more enjoyable. (muhahahahahahahaha!)
Anyhoo, I have one more day of "freedom", as I'm calling it and then comes dreaded Tuesday. What happens Tuesday? I'll tell you tomorrow.
Three Wolves - you, my dear are a wonderful breath of fresh air!!!!! Let's all try to be uplifting, please? This was the purpose of this thread - Cyn needing a place to vent and express herself. So many of us have known her many years here in CD land, so we know that for her to reach out to us in this thread is way out of her comfort zone. Sometimes some of us "oldtimers" here on the CD forum forget that we are not just speaking amongst ourselves, I know I do.
Please understand that Cyn is a wonderful person and is so tender hearted. She would never want anyone who has posted here to think she doesn't appreciate all that you have said. Trust me, she totally appreciates that you have come here and said what you have to say. Please.....please....PLEASE..... do not say that you wish you could erase your posts etc.... That only makes her feel worse. OK? Please?
Right now - at this moment - Cyn needs for us to HEAR her. She has no family close by, she moved not so very many years ago across the country and WE are her "family" now. So much valuable information has been posted here - by some of you that have experienced what she is going through. Please don't stop now. Remember that she is doing the very best that she can, and that sometimes we tend to get a little protective of her and her feelings........because we know her and care so much.
Come on and lets all try to make this thread something she looks forward to reading every day! She really needs this, and I think we all want to help her the best way we can. OK? Surely we can do this - all of us, if we really care enough to.
OK - ENOUGH!
Cyn - girl, I thought about you today when DH was bathing our furbaby - (Lilly - a maltese). I got to snickering and DH wanted to know why - I was imagining you giving your "old lady" cat a bath. Reminded me of that cat on FB with the real grumpy looking face. Always looks like he is about to say something really sarcastic (or profoundly sarcastic)! I am always hoping for really profoundly sarcastic!
Thinking of you and DH, and as always we are only a mouse click away.
Folks, I've refrained from commenting in this thread....but....
I am so truly happy the Caregiving forum is here, and that it is a place of peace and a place to discuss problems and express what is one's heart at any given moment. That's what this particular forum is for, to interact with others, gaining support and a feeling that you are not alone in your journey.
All that being said - let's be all inclusive in our threads. Please remember that others come here looking for the same comfort, but they are also looking for information and to share information and their personal experience as well. This is about asking questions, finding those who have walked the path previously or are currently doing so, and discussing what you know or have felt along the way, and how to deal with the current situation at hand.
Thanks for your understanding and participation. Peace to all.
Good Morning cyn and to your DH and to all your many friends. I hope that the weather is good where you are and perhaps you guyz get a chance to get out. Fresh air and a change of scenery is always a good thing.
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