Hello Group

[Essbo]

I'm Steve and I have ALS - seems like I ought to get a chip or something.

I turned 60 and retired, planning to play a lot of golf, then on a tee box my right leg folded and I COULDN'T GET UP! A couple of months later I was diagnosed and now can't play at all. I can still walk (actually I wobble rather than walk) with a cane, but it won't be much longer.

As an avid golfer, I was pretty much a club Ho, and traded off most of the good equipment for quality whiskey and Cuban Cigars. I have a trip planned to Key West where I'll sip brown whiskey, smoke a cigar and watch the Sunset.

I'm glad I don't have Bulbar onset so I can still holler for SWMBO to bring me a beer, she is a doll, and actually does it and only fusses at me a little. After being diagnosed, I went back to me old eating habits...real half-and-half in my coffee, bacon and eggs, all the ice cream I want! So it's not all bad.

I'll be around...

 

[Lavender Lady]

Hi Steve, Welcome to the forum I am glad you found us. This has been an invaluable site for support for me. It sounds like you are in good spirits. Stay that way! It's a new game of golf.

 

[pjm220]

Welcome, Steve. I am so very sorry for your diagnosis. You sound good, so that is a plus. After my diagnosis, I also went to real half-n-half and put butter in my mashed potatoes... No more worrying about my diet since I had the fast moving kind. When the doc said "under no circumstances are you to lose weight", I was very pleased!

 

[Al]

Hi Steve. Welcome. Hope we can help and you can make some new friends.

AL.

 

[Ms. Pie]

Hi Steve! I've recently been diagnosed with ALS too and husband and I loved to hike, ski and run around in the Rocky Mountains. Now it's just driving around in the Rocky Mountains which isn't so bad. It's gorgeous here. I will and do miss the activities though. Best wishes to you! See you around!

 

[smwelder]

welcom Steve, I like the way you think , a good shot of wisky and great food what the hell we only live once best wishes to you as you travel on your new path. now its time to live like your dieing . yel cream cry be mad then move past that the sooner the better. then finish living life to the fulest

 

[Steven B]

Hello Steve, I am Steve also. I like your attitude. I was lucky enough to spend a week on a beach in Mexico about 40 miles north of Puerto Vallarta about a month before I was diagnosed. My Brother inlaw that lives in Guadalahara would push me out in the sand every day in a wheelchair to a table coverd with umbrella an open up a bag of ice for the bottle of Grey Goose Vodka or Jose Quervo Traditional. The last day we stuck to Beer but it was all good. I am ready to go back

 

[Sheri Lochner]

Hello everyone
My name is Sheri and I work with the MJD Foundation in Australia. MJD stands for Machado Joseph Disease - it is similar to ALS/MND. The disease affects a group of people who live in East Arnhemland in the Northern Territory. I won't go into lots of detail. If you are interested in finding out more visit our webiste, MJD Foundation. Just google it and it comes up. The reason I have joined this forum is to talk with members about your use of the iPad as a communication device. We are using iPads with 5 people who have lost their speech. They are wheelchair users and live in very remote parts of the Northern Territory. The foundation has purchased the iPads for these people because there is no government assistance or support. In addition, English is not their first language, Yolngu Matha or Aninindilyiakwa and their dialects are their first languages.

 

[peter57]

Hi Sheri,
Just search this forum for the use of ipad's, several people do, including me for long answers and questions.

Cheers
Peter

 

[Miss]

Hi Steve,

As an avid golfer, you had to love the Master's Tournament today! My husband had to miss attending last year - he was being diagnosed with ALS. It was on the golf course that he first noticed symptoms, too. This year, the disease was just too far along for him to attend. Watching was a bit bittersweet. However, what a tournament!

Good luck to you