PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

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Still here, though I never remember to post on a Wednesday. I actually had an amusing experience at the ALS Clinic on Monday, a rare occurrence. The Resp. Tech did my FVC and was exclaiming over my amazing numbers--158% of expected. Knowing this was impossible unless Radicava had unsuspected properties I began asking questions. She had recorded my height as 4'9" instead of 5'7", which once corrected brought me down to expected levels, but for a moment I wanted to believe some miraculous reversal was taking place.

Ed
 
Ah well, mayhaps (although I know it to be absolutely false) it's Wednesday somewhere in the world... errrr solar system... errrrrrrr universe. So, it is with great joy and delight that I proclaim... Happy Wednesday!!!

Not much new here, still progressing ever so slowly (for which I am most definitely thankful!) Wife and I will be flying out on July 4th to visit our youngest son, and his wife, in a fly-in, fly-out, village is remote Alaska! I scheduled the flights with plenty of layover time so that we don't need to rush through airports. Hopefully, my leg will hold up and we'll at least reach their home safely.

Have a great one, all y'all, and I do hope to pop in at least once more before we're off to the north and west!

John
 
Today is my 5 year anniversary of diagnosis and I'm still here, now on to the next 5 years. Now if I could watch it reverse over the next 5 I won't complain.
 
John,

Don't be afraid to ask for wheelchair assistance going through the airports. I did well before I needed it and Delta was great. Depending on the airport, you can walk miles. I know Atlanta was a beast and my main worry traveling alone was that I wouldn't find the gate in time. The wheelchair transport did all that for me and even let me stop for ice cream and the ladies room.
 
It is not Wednesday, but I will post anyway.

I have not been very active here for the last couple of months because we have been busy travelling. We did a one-week trip to the Grand Canyon and were then home for a little over 2 weeks while I tried to recover.

Then, we embarked on our wonderful four-week trip to Yellowstone. It was fantastic and I hope to provide more details in other threads that I will start. We were joined there periodically by several groups of friends and relatives.

The highlight of the Yellowstone trip is that I was able to see Steamboat geyser erupt! It is the tallest active geyser in the world and has historically be wildly unpredictable. This year, it has gone through a series of 8 eruptions spaced about one week apart. I saw parts of 2 eruptions and managed to be there for a third eruption. Wow! What an experience.

One of my sisters stayed with us for close to 2 weeks after we returned from Yellowstone. We had a great time, but now I am very tired. I know it will take me awhile to recover, but that is a price I had anticipated for going on these grand adventures. It was so very worthwhile!

Keep an eye open for the threads I plan to start with pictures, videos, and descriptions of some wild wheelchair adventures that confirm I have absolutely no common sense at all:).

Steve
 
hi all
still here but haven't been in touch much. I have been a bit rough and my breathing has got to the stage where I am dependant upon nippy 24/7. I am sleeping lots so visitors to are warned beforehand so that I could doze off mid sentence ;-)

I am in good spirit though and am delighted to announce that I have a new grandchild, her name is Ada and I may be biased but I think she's gorgeous.
Wendy
 

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She is beautiful! Congratulations Wendy and thank you for sharing the picture
 
Wendy, little Ada is beautiful.
Steve, looking forward to those pictures.
 
It has been a couple of years since I have been here. I should have remained active as it was my first group interaction. I have just been so busy with one or 10 outreach areas over the years.

In reading some of the posts, I am reminded of Max's 3 rules: DON'T FALL, DON'T FALL, DON'T FALL!

Also, utilize airport assistance. They can get you to tight connections if you are using them. If you go it by yourself, you may struggle to change gates. I have flown a lot and cruised a few times and only had 1 error - the lost my 455 pound wheelchair. It was due to a last minute kerfuffle at the gate. The issue came when a lady at the baggage place called us liars, even though I had to crawl and lifted into the manual one the had at the gate.

Just communicate with every moveable component and do it again. Be responsible for assuring that there will be no errors because you have made everyone aware as you go.

I hope to get back on more regularly. We are having a NEALS Research Ambassador training and want to make sure they know this is an excellent resource. Then 2 trips, one to Yellowstone and The Grand Tetons. The other as a member of an Advisory Council for the International Alliance of ALS/MND Associations. Nothing like Scotland in December.

I would encourage each one of you to be as active as you can.
 
Friday is the new Wednesday.

Still here, holding steady.

The physical therapy exercise I mentioned a few months back is helping my legs with transfers and standing. Free walking is not possible, but I am able to climb very short steps with a handrail again. This helps car and chair transfers at low curbs and uneven ground. Standing and being able to stretch the legs while braced off a door or counter is a major victory, and offers welcome relief to swollen feet. My fingers are not responding to the therapy stretching and motion as well as the legs, but I'll celebrate the leg improvement. The leg improvement and the go go scooter are my reasons for celebration this month.

Hang in there.
 
Getting the $hit end of the stick here these last few weeks, hoping fora time out call.

Nightmare means to do me in a little at a time!

Beautiful day here in almost heaven

Lov ya. Chally
 
I'm back in pain. I think my torn rotator cuff got aggravated from too much paddling in pool but the pain went from my shoulder to all over my upper body. Neuro thinks co-morbidity and sending me to rheumy in August. It seem even gently stretches on warm muscles end up causing pain.

We're having a nice, dry July.
 
Still here. Not doing good. Almost ready to throw in the towel ����
 
I am sorry Chally Kim and Chief. Progression is not pretty and pain is terrible. Wishing comfort for all of you
 
Thanks, Nikki.

Bruce and Chally, sending you lots of love and good wishes.
 
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