One day at a time, 730 times (and counting)!

[Jeff Long]

So, does one celebrate such an 'anniversary' or lament it?!?!
Truth told, I'm happy as hell to make it here, and grateful for the slow progession that allows me to say it, type it, or whatever (almost!) else I want.

I appreciate the committed folks who share their time and experience with ALS on this site. (And by committed, I don't mean institutionally!)
No matter the grumblings between posters, angry departures, moderator changes or completely whack-o DIHALS loons, the core contributors here are helpful in ways you cannot imagine.
So wave 'goodbye' to those who leave (and 'hello' when they return), keep dealing truth (and an occasional smack on the forehead, if you don't mind) to the DIHALS gumbies, and know that the facts, truths and experiences you share are benefitting a great number of people who 'lurk' in the shadows.

Oh, and as always, let's hope the smart folks figure out a way to get rid of this monster!

 

[ottawa girl]

Jeff,

730 is worth counting, noting and strange as it sounds - worth celebrating. Don't know about you - but I think it takes guts and brawn to be in our 'line of work'.

One day at the time - an uphill race... ( except for your avatar :razz

Here's to the next 730 days - and beyond.

 

[affected]

here here I'll drink to the Jeff!

 

[Jeff Long]

It has been an interesting couple of years since the doctor said "... bulbar onset ALS." I wish people (myslef included) would appreciate health, life, family and friends as much before an event like this as we have since it began. I didn't get any smarter or more profound once diagnosed, just saw how much I had taken for granted. Seven whacks to the back of the head for wasting so much time in those first 49 years!
I am still able to work, ride the Harley, and though slurred my voice is remains strong. Can't whistle a lick any more, but I wasn't all that good at it anyway and it bugged the stew out of the dogs!

 

[celticgirl]

Great news Jeff! I "celebrated" my first year last month and so grateful for slow progression! Here's to many more years for all us PALS and CALS!

 

[cervus]

Definitely cause to celebrate you are here, Jeff. For you and your family and friends and of course all the Forum members you have helped and continue to help. Here's to the next 730 days and more. Yasmin.

 

[ECpara]

That's great, Jeff! You still ride your Harley, my husband can still golf in the high 70s, low 80s. He can no longer talk or eat, but he has said (on an iPad!), that if he had to have ALS, he is SO fortunate it was bulbar onset, not limb onset. He can easily type to his friends and family, drive a car, skeet shoot and hunt, too. Don't know how long this will continue, there are signs of atrophy, but he'll keep going for as long as he can! Good luck to you, that is great that you can still work, too!

 

[AfraidButNotAlone]

Keep on counting Jeff!

 

[bowser]

That's great, Jeff! You still ride your Harley, my husband can still golf in the high 70s, low 80s. He can no longer talk or eat, but he has said (on an iPad!), that if he had to have ALS, he is SO fortunate it was bulbar onset, not limb onset. He can easily type to his friends and family, drive a car, skeet shoot and hunt, too. Don't know how long this will continue, there are signs of atrophy, but he'll keep going for as long as he can! Good luck to you, that is great that you can still work, too!

I am glad your husband's is slow.

My wife was diagnosed with bulbar and 3 months later needed a cane, 3 months after that a walker, and 6 months later a wheelchair.

4 months after that bedridden 24/7 and paralyzed.

Glad to hear he can still enjoy physical activities and treasure each day that he can.

I would give anything to be able to turn back the clock. ( if even for a few days )

 

[Gerri]

Congratulations! Certainly an excellent reason to celebrate! Keep on enjoying life!

 

[Jeff Long]

Bowser,
Hate it for you, friend. This monster looks and acts so differently between and amongst all of us. I am thankful for the slow progression (and realize the progression will continue) but also reluctant to say it often because I know so many others are not as slow.
Prayers for you and your bride,
Jeff

 

[vickim]

I hope you celebrated. I pray you continue to have slow progression.