A Newby on The Bus - Page 2

tammyg · 11-25-2011, 08:33 PM

Welcome, so sorry you are here. You have come to the right place. Alot of great advice and love here

Can we make this one of those fancy buses that have a mini bar, sofa's ect...

minnesota · 11-26-2011, 09:19 AM

Hello. We're all here. Support, care, friendship, answers, discussion, thoughts, ideas, opinions, warm hearts and love. We're here for you. I am a caregiver and I'm on the bus--let me tell you, with this group there will be love and laughter along the way!

ladyrider · 11-26-2011, 10:45 AM

Hello Bill, I am also a passenger on this bus, not by choice of course. My diagnosed was in 05/2011. Seems like this beast is feasting on me fairly rapidly. Walking is a disaster, arms and hands don't want to work so I require a lot of supervision to put it lightly. But God is good and he allowed me to wake up this morning and enjoy what he has created and for that I give Him The Honor and Glory He Deserves. We don't know which streets this bus will lead us through or what hills and valleys we'll pass. So the best we can do is to enjoy the scenery. I wish you the best and God bless you!

Bill43 · 11-26-2011, 02:42 PM

Thank you all for the warm welcome. Hope I can hang around long enough to get to know each one of you. With a busload like this it's going to be an enjoyable trip.

Funny thing happened when I opened this web site today. I had not logged in so the advertisements were still visible and the very first one at the top of the page was for a Party Bus Rental Service. Just a coincidence, or do our angels have a sense of humor?

I don't want to start any trouble right off the bat but GO RAVENS

Georgia Peach · 11-26-2011, 06:15 PM

Hi Bill. My husband is on the express bus. His symptoms started last year with right foot drop at Thanksgiving and hand tremors. He can no longer walk or stand, turn in bed, lost use of his dominant right hand, two bouts of pneumonia, 2 episodes of pulmonary embolisms and his breathing (FVC at 38%) and voice are now affected. Came home from the VA Hospital after four days with the bi-pap machine last night.

BUT I'm making Thanksgiving dinner tomorrow and he can eat it if I cut his food! So there is something to be thankful for still.

Susan10 · 11-26-2011, 06:38 PM

Hi,
I'm a newby, too. Diagnosed 9/29/2011 after only 4-5 months of going from one Dr to another. I thought it was carpal tunnel b/c the first real symptom was that my little finger curled on my left hand (not dominant) and then it slowly took oveer my hand and arm. I type one-handed but have purchased Dragon speak and plan to learn it soon. I have just retired from my job of 16 years as a career coach / part-time university professor and am wating on a determination from SS. Before this ride goes too fast, there are some things I want to do -- make a scrapbook for my only child (age 21), take a great vacation, etc.

I now have some trouble walking, can barely use my left arm/hand/shoulder, and find it extremely challenging to get up from the floor. Fortunately, I've fallen only twice and could crawl over to a piece of furniture to pull up. The best thing that's happened in the last 6 months is my handicap parking and the steering wheel knob my husband put on my car for me.

I attend an ALS clinic and support group. I'm glad to have found this online group too. This is a really steep learning curve.

llwlpn · 11-26-2011, 07:55 PM

Hi Bill, sorry that you need to me here. The people here are pretty nice though. I was diagnosed in July 2011.

One thing that has really helped me is I have worked really hard to have a good attitude. I had to give up knitting and crocheting but I can still read so I've been doing a lot of reading. I also started a book review blog so I can have a project to work on in spite of having ALS.

I'd like to transfer off this bus to please.

michael0314 · 11-26-2011, 08:51 PM

Bill, as has been said a hundred times if once, sorry you have a reason to be here but glad you found us! The people here are the best and the site is an invaluable resource. Sounds like you have the right attitude, sense of humor! The best saying I ever herd was laugh when you can, cry when you have to and take it one day at a time.

HelenL · 11-27-2011, 12:28 AM

Hi everyone, I think this bus is too crowded, and we have a cranky driver

Can I get off at the next stop puh-lease? Darn! Ok, Al you're not really cranky to me, but I had to throw that in, 'cause before I saw your post I was going to say that this bus had a crazy driver! So like everything else in our lives, I modified it a bit (and to tease you)! Great analogy of the bus, though I want a sloooowww boat instead of a crazy bus, but if the seats recline and they have a handicap bathroom on board (and a wet bar would be nice!), we can watch a movie together?

I think we all have to take it one day at a time, and everything is about moderation. I went from tripping on my left foot (blaming the shoe of course) to more than few falls, from a cane to a walker to mostly using the scooter now. I don't trust myself at all with just a cane unless I'm on the steps, holding on for dear life of course! My hands still type, but feel like they used to when cold, but all the time: just don't to work right, though I'm obviously still typing. And I'm lucky, as it hasn't affected my eating, drinking, and breathing from what I can tell...

So welcome aboard everyone to our 3 hour cruise to nowhere! I'd say it was nice to see all these newbies here, but unfortunately for the reason that you are here... This forum is my lifeline, as you can tell by my being here after my high school reunion, at about 1:30 a.m.!

HelenL · 11-27-2011, 12:37 AM

The wheels on the bus go 'round and round...

Barney - The Wheels on the Bus - YouTube

Pat4t · 11-27-2011, 01:48 AM

HI Bill
Like you I have been on the bus a short time.
Mine is in my legs and arms so far.
Although this is a terrible disease, we have to hope that things will work out for us.
I am not sure how that will happen, but I choose to believe it will and that allows me to live
one day at a time enjoying what I have
Pat4t

Bill43 · 11-27-2011, 09:22 AM

Don't know what happened but I tried to post a reply yesterday to all of you for the warm welcome aboard. When I clicked on the "submit reply" button a message flashed on the screen that I just caught a glimpse of. It said something about the post being approved by the moderator. What's that all about?

Regardless, thanks everyone for the warm welcome aboard. When I opened this web site yesterday without logging in a funny thing happened. The advertisements were still visible and right at the top of the page was an ad for a Party Bus Rental. Was that a coincidence, big brother reading our posts or our angels with a sense of humor?

OK I'm going to sit back and enjoy the ride, oh one last thing, growing up in Maryland I just want to say................GO RAVENS

kiwisally · 11-27-2011, 12:20 PM

Hi Bill, hi All, anyone willing to slide over, I'd like to sit by someone who has a idea where we are going an can point out the sights for me along the way. I was diagnosed in July 2011, PBP, managing on my own with no aids, trying to select a TTS device as the need is fast nearing, have quit work as it was physical and couldn't keep it up any longer, diet changes have been effective and all that is necessary so far, lung function is as good as ever, taking one day at a time and trying to keep positive. Not to be tooooo picky but I'd like a window seat!

susanf · 11-27-2011, 03:50 PM

As you can see with most of us, we still have a sense of humor. It is what it is. I try to laugh everyday. Believe it or not, it helps!

Ladyinn · 11-27-2011, 05:15 PM

Golly Gee, I worked so hard on her response to wear your last post might be, Bill, and when I went to post it disappeared! I guess the moderator or maybe the cyber fairy has taken a liking, or maybe a disliking, to what we are writing. Perhaps, it appears as graffiti on the side of the bus. Think I'll get out at the next stop, check in at the pub, and while I'm at it. I will check out the side of the bus for any missing notes that might be offensive.

By the way, K. Sally, where ever this bus is heading I hear it is a glorious place.

But we must remember that the destination is not the point, but we can and should, enjoy the moment -- it's the journey that will get us to the destination. Not sure why we have to go this rocky road by the idea now it will be worth it.

My stop bus driver the pub is on the corner..