Hi Everybody

[Flashdance]

I was diagnosed with ALS this March. I've been visiting the forum and feel as if I know you a little bit already. I'm not very good with computers (iPad), but decided it was time to stop being a spectator and try to participate. So I'm with you officially now, to be strong against this disease.

Time since the diagnosis has been a blur. I feel like I've entered the Twilight Zone (dating myself there). Like this can't possibly be happening. But I know it is........
I'm glad none of us has to do this alone.

 

[zoohouse]

Welcome Flash, and I have seen the Twilight Zone as well, so you're among friend (older in body, young at heart). This is not a disease anyone should have to endure alone. These are a great bunch of people, truly a family of people.

Paulette

 

[MaxEidswick]

>Welcome Flash, and I have seen the Twilight Zone as well, so you're among friend (older in body, young at heart). This is not a disease anyone should have to endure alone.

Hi, Flash! the Twilight Zone it is! With a bit of Albert Hitchcock thrown in. Like Paulette said, welcome to our unique abode!


Max

 

[Nikki J]

Welcome Flashdance
Glad you posted! Sorry you have to be one of us but look forward to getting to know you!

 

[Flashdance]

Paulette and Max, thanks for your replies! Have to say I felt like a little kid tiptoeing downstairs on Christmas AM, holding my breath to see if any gifts had appeared under the tree! Just feels strange (in a good way) in that I've read many conversations that members have had with one another, and now here I am conversing directly with all of you.

I can still hear the music in my head that began both The TZ and Hitchcock. ALS also has kind of a Stephen King quality. Haven't read a lot of his stuff, but there was a book "Thinner", in which a man couldn't stop losing weight no matter what extreme measures he took not to.
Eerily true for PALS/CALS now.

There is way more on this Forum that becomes available once a person becomes a member-WOW. Budgeting my time is going to be even more of a challenge. As will be making sense of all the way-too-tiny icons. My first job is just learning to post and reply. Thanks for letting me practice!

And yes, my body is almost 60 but with a heart that's often in preschool.

 

[Flashdance]

Thanks to you, too, Nikki. I'm so slow with the technical parts of keyboard and posting that your response came in while I was in process. Hopefully I can speed it up!

 

[MaxEidswick]

>but there was a book "Thinner"





just ordered it, thanks -- now 12 behind!

 

[Mar51]

Hi Flash,

I just started posting more too. This is a great group. I'm humbled by their knowledge, compassion, and welcoming spirit!

Mary Ellen

 

[bigmark1954]

Welcome Flash....your references are very relatable for me, I will be 60 at the end of June. Lots of really cool people and informative reading to be had here.
I am the village heathen.....but I will try not to corrupt you.....

 

[Santa joe]

Flash, you are not alone. This forum has been a Godsend for me. I truly don't know where I'd be without all the amazing Pals and CALS here. I'm sorry you have to join us but we are all holding hands and supporting one another in this horrible disease.

Debbie

 

[azgirl]

Welcome Flash. This group is so knowledgeable, compassionate and helpful. It mostly helps to know others who know exactly how we feel. It's starting to feel like family.
I just downloaded Thinner, too.

 

[MaxEidswick]

>I am the village heathen.....but I will try not to corrupt you.....

slim chance

 

[Santa joe]

I read the book "Thinner" years ago. Was so engrossed in it, I ended up taking a vacation day from work to finish reading it. I can't hardly concentrate enough to read the newspaper now. Maybe books on tape for me.

Debbie

 

[zoohouse]

We have been doing audiobooks now for a while, as Tim can no longer turn a page on a book or a Kindle. I also like them for when we are driving any distance, as it helps me stay awake. We will have to get that one. My problem is that if the book isn't finished when I get to the place we are going I don't want to get out of the car. We also listen to the stories while I am getting him ready for bed, making the whole procedure fly by. The company that we got Tim's bed from is working on a voice control system that doesn't require actual words. It is programmed to do a function to a certain sound, so that for those that have poor speech as long as you can make different sounds it will work.

Paulette

 

[skipper66]

Welcome to the forum Flash. But, so sorry for your need to be here. My dad is 79 and has ALS. It is two years now since his diagnosis. Looking forward to getting to know you on here. We vent, cry, and laugh together on here. I am not my dad's caregiver but I still get alot of support with dealing with my dad having such a horrible disease. Skipper (Kim)