PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

Still here and plugging along.
 
The deep freeze has broken. Spring is officially in the air. Happy days are here again.

Ops normal in the Heartland
 
I continue to do OK. I had a ski outing planned for Friday, but my body is just too worn out to do it this week. I was sorry to have to cancel it, as it would have only been my second ski outing of the season.

My sisters and niece arrive on Sunday and I have another ski lesson set up for Thursday of next week. I sure hope to be able to make that one.

We are in the middle of another major winter storm. It is certainly beautiful.

I am really looking forward to visiting with family next week. It should be wonderful.

Steve
 
My progression seems to be quicker than I had hoped. I have certainly gotten used to only "eating" through the PEG and not being able to speak. But in the last month my stability when walking has become a real concern. Guess it's time to look into a powered wheel chair!

Spending this month at our home in Idaho. Very cold but certainly beautiful out. I'm trying to come up with things my hubby and I can do together. He watches TV and I deal with my iPad. Need some suggestions as to what we can do (and travel to)
 
HI Idaho2790-
Sorry about your unsteadiness in walking. I can certainly relate! You probably will want to talk to your doctor about getting going on a PWC as it can take a couple of months to get measured, approval, decide on brands/features and ordered. It's great that you are thinking about travel options! We recently heard a presentation by a non-profit travel service called Wilderness Inquiry specializing in accessible excursions for all people regardless of handicap. You can google them if you're interested.

It's warming up here and snow is melting. Have a guy who cleans the cat boxes now!!!
Mary
 
Had my clinic visit yesterday. Breathing down to 54% and lost 14lbs, but other than that they thought I was doing really well. Still walking without issue, driving, and working. Shoulders, arms, and hands still getting slowly worse.

Almost 2 years in so I guess I can't complain.
 
Warmth (relative) and early signs of spring abound. The red-winged blackbirds are back at their posts. Sadly we had to put down our 16+ year old cat, Chester. He was a cat with real personality and a mighty hunter, often taking down (and dismantling) full grown rabbits. Clinic on Monday—breathing still good (FVC 118%), swallowing good (I had a swallow test with barium that was normal). Legs increasingly useless, tho I can get around with a walker for short distances and use PWC more and more. Happy spring equinox to all.

Ed
 
Hi All,

Weather in Florida has been all over the place. It was good during bike week but now it seems cold again.

Next week is my dental appointment and then back to physical therapy. The PTA at physical therapy is also a massage therapist, and a good one. Looking forward to any relief they can give me.
 
Greetings! Legs getting worse. Arms following slowly behind. Breathing good as long as I take it easy and don’t do to much. Eating fine.
Spring is coming here and the mounds of snow are slowly melting away.
Got new batteries in my PWC after just 3.5 months. So glad this was a covered repair.
I am here! Mary
 
Happy Solstice!

My speech last week at an ALS fundraising luncheon went well. About 10 of my former symphony colleagues surprised me by attending to show their support.

My neurologist is leaving our area so we are looking for a new neuromuscular disease specialist to run our clinic. Meanwhile, my pulmonologist is aware of this and seems to be willing to manage much of my care until we find a new neurologist.

Legs and hands continue their downward spiral along with progressive bulbar symptoms. Respiratory decline is mild and steady. Pulmonologist is ordering a barium swallowing study to make sure I’m not aspirating.

Otherwise, life is good.
 
After lurking on the forum for over a year, I just recently clicked on the roll call thread and enjoyed getting to know some of the members a bit more personally. I figured I should also share.

I was 56 when I received my diagnosis. I believe I have progressed a little quicker than average. PWC dependent, transferring with Hoyer, full time Tobii user, still eating most meals as long as it's soft and tender. I sleep well with a Trilogy and also use it parts of the day.

I would think most of us has primary cALS, and mine is my wife Lori. Together we have met each new challenge, with the help of some of you on this site. We continue to get as much enjoyment out each day that we can. Laughing is much more fun!
 
Good for you Bob,sorry to meet you here but so be it,
 
happy solstice and full moon.
This is my first post here. I still can move a few fingers to type, walk slowly with a rollator and sit on my bi-pap several hours/day.
Recently speaking is becoming more difficult, mainly because of shortness of breath. This is so far the hardest for me, I love to talk.
I still have some bulbar crying/laughing, which I actually enjoy, as a meditator a have learnt long ago to allow and accept my emotions.
Yesterday I came back from a short holiday and going in the pool unfortunately had to find out that my arms won't support
swimming anymore... but I love moving in water and floating.
 
As a lifelong swimmer it's something I miss--getting to and from a pool and negotiating the locker room has gotten too onerous. I think my arms could still propel me, but my legs would just sink, I'm afraid. I started meditating shortly after my diagnosis and find it very helpful. Best of luck to you.

Ed
 
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