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Jeff Long

Distinguished member
Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
City
Raleigh
I thought anniversaries were supposed to be happy occassions?!?!

I can say it wasn't a bad day, and I tried not to get weighed down by the reminder of the diagnosed but at the same time I couldn't help thinking how blissful I was in my ignorance of all things ALS! On a mutiple guess test, I would have chosen "C"; 'Bulbar' is a light fixture on the Starship Enterprise. And 'bye Pap' was a farewell greeting to a grandparent. And who knew that 'peg' wasn't just a knock-off candy dispenser in the shape of your favorite cartoon character?

One of the things I repeatedly saw during my search for info was that "50% of ALS patients die within 2 years." Well there's a fine pick-me-up!
So at the half way point of that timeline, does that mean I'm half way to being half dead?!? Let's hope not!

My speech is getting more slurred and my breathing more difficult; however, these are minor by degree. I also cramp up more than a Sumo wrestler wearing a fat-suit in the Sahara Desert but realize that too could be worse. By all accounts, I am grateful for a slow, slow progression.
I am sad for those whose progression is faster, more evil and more debilitating and I pray that things would slow for them.

My wife and 4 kids are great about letting me deal with this using morbid humor at times, and I think we are all at peace with the end game. Don't like it and pray it wasn't so, but you can't really pray for or about something and then grumble to God about it too. So we don't!

It's been a busy year with ALS; celebrated 30 years with my bride, saw one child graduate from college, one from high school and walked my oldest daughter down the aisle at her wedding to a great young man. Rode the Harley to Daytona Beach to spend Bike Week with my son (and leaving this week for Biketoberfest with him too!) and enjoyed an amazing trip to Canada with the Mrs. and our good friends. Re-established better relationships with extended family that I'd ignored in the past and met some great, great people who work in the business of treating this nasty disease. I quit worrying about the return rate on long-term bonds (I do still check the expiration date on food before I buy it!) and things I cannot control.

I wish I'd had this perspective before I had ALS, but better late than never! I don't fear dying; I fear leaving what is a very blessed life that is more than I dreamed of. So I will continue to 'die slowly and with great resistance!'

For those who post here regularly to provide insight into life with ALS, I appreciate your wisdom. Many of us who 'lurk' here are better informed because of you.
 
Hugs to you Jeff
 
I think that as long as you maintain that wicked sense of humour, you'll do fine.

There was a radio broadcast on CBC yesterday interviewing a man who quit his job to spend as much time as possible with his dying mother. He mostly read to her and spoke with her for about a year until she died. She had no fear of dying and both enjoyed the time they shared but both were also very sad to miss the happiness in the future that would never be. I think that captures my feelings on it too.
 
Congratulations on surviving your first year with Lou!

You're making the most of life by enjoying your family, something all of us should do DX or no.
Keep up the morbid sense of humor, we find it suits our needs very well!

About the cramps and muscle spasms: I'd been on 300mg of gab a pen tin 3 X a day for awhile and was beginning to. Get some monster breakthrough cramps and spasms. I was at Clinic on Friday and my Neuro increased the gabby to 4X daily and added bac lo fen 10mg 3X daily. I can already note the benefit.

Enjoy that bike!
 
Jeff,
That was awesome.
I just passed my one year and completely agree with you.

Cheers,
Casey
 
Jeff,

I also lurk on this site in order to learn everything I can in dealing with this disease and so appreciate the people who post on this forum sharing their stories and giving advice. My husband has past his first year also and his progression has been slow. I am very grateful for this slow progression but unfortunately that does not mean we are able to do the things we did last year. He can no longer dress himself but he can still walk, talk and eat. I love your wicked sense of humor and always click on your posts to read because I can always count on a good laugh. My husband also has your sense of humor and there are some people who just do not understand how we can laugh and joke about living with this horrible disease. We refuse to change how we approach life just because of our diagnosis of ALS. Instead of looking forward to retiring we now take each day ignoring ALS and enjoying our life, our children, our grandchildren, family and friends to the fullest.
 
What a great post, Jeff. You said a lot in it. You may even have said it all. Yasmin.
 
I enjoyed your post, very positive.
 
Hugs to you Jeff
 
Jeff, AWESOME writing style, really enjoyed your post. I think humor can help us through when the going gets tough.
Darryl
 
Everyday is a great day. Good attitude Jeff!
 
Made my day Jeff !
 
Great attitude Jeff. I am coming up on my three year anniversary.

Have you tried magnesium supplements to help with the cramps. I used to have terrible cramps at night until I started with the magnesium suggested by my doctor. It changed my life. Only get cramps once or twice a week.

I am glad you were able to walk your daughter down the aisle. That is my goal. Hopefully I will make it. :):)
 
Uh Jeff?

You are one of the 'you guys' that post encouraging things, you know that, right?

I wish you'd call while you're in Daytona. I'd love to meet you. Your PMs when I've been down have helped a lot!
 
Jeff...that was a wonderful post.
 
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