Old 10-10-2017, 08:43 PM #1 (permalink)
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Default It's been a year and I'm not celebrating

"There is no easy way of saying this but your EMG confirms~~You have ALS. I'm sorry." I wouldn't wish these words on my worse enemy. It's been a year since my PALS diagnosis and yet it feels at times as if it were yesterday. In less than a year we have gone from drop foot to using a trilogy averaging 14 hrs a day. The placement of a PEG (3 weeks ago) to the now ordeal of ordering his power wheelchair. House remodeling, building ramps, adjusting to what is referred to as our daily "new normal"(I long for the days of just normal), the loss of some friends, loss of words, the loss of dreams, forced retirement and the list keeps growing. However today I'm going to concentrate on being thankful what we've gained in this past year. A greater appreciation for moments not days, the family members and close friends that have been proactive rather than reactive, the true intimacy of just holding hands and that at the end of each month we can still count more good days than bad. (and as you know,the bad days can be really bad). I am thankful for this group. You have given us the ability to learn from the real pros not just the medical/textbook version. You have answered questions, asked and unasked. You have bared your souls to our reality and reassured us that we are not alone in this struggle. You each have educated, advised and encouraged. Thank you for this forum.
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affected (10-12-2017), geneice (10-11-2017), Narrowminded (10-11-2017)
Old 10-10-2017, 10:27 PM #2 (permalink)
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Default Re: It's been a year and I'm not celebrating

Hi initforever. I'm sorry that you are experiencing a non-happy anniversary of sorts. There is little I can say that will be of any consolaton for you, but I am glad that you have found some solace in this forum. It is indeed a rich source of information, encouragement and inspiration from people who have "walked the walk". I can identify with what you have said. It is just short of 2 years from diagnosis for us, and in some ways I feel like time has been standing still. This is not rational thought; it's more of an emotional state (contradicted & contrasted with my husbands steady decline & piles of medical equipment, and a big change in our lifestyle). There are still times when I just kind of inwardly shake my head in denial, if you know what I mean ........

I'm glad you have found a greater appreciation for the small things - good moments, close friends, holding hands with your love. It's those little things that we hold dear, cherish & will remember always.

Sending you warm thoughts, encouragement and a hug!
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Old 10-11-2017, 05:19 PM #3 (permalink)
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Default Re: It's been a year and I'm not celebrating

Hi Initforever - As someone who has passed 10 years since that formal dx, I'm afraid to say it doesn't get easier. I still can clearly remember being told, and then confirmed. While we are farther down the path and have been for 7 years since he was trached and vented, its not really much different in some ways.

As Buckhorn says it almost feels like life standstill for us, but then it also seems like it is passing us by. Like we no longer participate in it. And we too have lost a lot of friends over the years.

I'm so happy you can concentrate on the positive of each day. That isn't always easy in the position, so good on you for being able to do that. Keep thinking that way and you will be ok eventually.

Hugs,

Sue
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Old 10-12-2017, 04:20 AM #4 (permalink)
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Default Re: It's been a year and I'm not celebrating

Wow... Talk about being in the same boat! The neuro dropped the ALS bomb on me October 9th, 2016. My wife also had a dropped right foot and the left followed shortly. She's got her Trilogy and she also got a PEG three weeks ago. An ATP is coming to the house today from Numotion to evaluate her for a power wheelchair. Are we in sync or what?!?

This has been a strange new world of intense happiness and intense sadness wrapped in an impending sense of doom. The stress, depression, physical exhaustion and lack of sleep almost make it unbearable at times. That said, we've had alot of fun this last year. Minus the ALS, it would easily be the best year we've had in a long time.

And yes... If I had to choose between the clinic and ALS Forums, I'd take the forums any day.

It's 2:00 AM and my eyes are closing. May our good days continue to outnumber our bad days. Goodnight!

Rob
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