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

Hi All,

I am still around and progressing slowly.
Did the KC ALS Walk in October with my wife and son and a host of friends.
Visited my son and granddaughters and their families in Colorado Springs last month. Even walked around Bishop's Castle in a snowstorm.
Starting my 16th Radicava cycle next week.

Cheers to all!!
 

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I'm retiring at year end from a law firm and am having some nice celebrations. Using a power wheelchair a lot more. Speech is hard to understand, and I get all nutrition through a feeding tube. Getting weaker, but I still do what I can (including putting damn contact lenses in every day). I check the forum most days. It's remarkable.
 
Happy Wednesday everyone.

Hudson, you might want to think about vision correction surgery or cataract removal with lens implants if you’re a candidate. I had the latter done mainly to correct my severe nearsightedness (lenses were -20) even though the cataracts were not that bad. It got to the point where I could no longer get the contacts in or out.

I can’t recommend the procedure highly enough. Now I have 20/20 vision at reading distance and use glasses only for watching TV.
 
Well, here I am:). Every morning I wake up and say, "'B', you have ALS. Let's check and see what's working." I'm thankful that most things still are! Coping with those that don't.

I'm working hard on my Family Memoir. It is an interesting and meaningful project. A special legacy for the younger ones, who don't know the family folklore.

I wish I could encourage others to start theirs. You don't have to know how to "write". Just pretend it's a letter to a friend. Start with something about yourself. You know you best.

If you need some hints, let me know. Once I started I can't seem to quit. Another memory keeps popping up.

So, till later - Best wishes to all. B 8)
 

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Thank you for restarting this thread! It seems to be more alive than before.

I always thought this might be a great place to make connections wtih others dealing with similar issues but haven't yet felt like I belong to the group. So many of you have been here much longer and have close ties already. I appreicate the chance to get to know all of you better.

I am teaching each day in my final year with the help of a co-teacher hired by my district to assist me in every task necessary. Can't write much and typing is becoming more difficult. I am so grateful to have this teacher to give me one more year. It gives me a positive outlook for each new day!

Christmas preparations are underway with the help of lots of friends and family. My daughter plans to come next weekend to learn how to make fudge-my special contribution to the holidays for years. I certainly won't make my usual amounts as gifts, but the tradition is being passed down.

Blessed Holiday Wishes to All!

Cathy
 
Hi Cathy,

I hope you have a wonderful Christmas with your family. It sounds like you have such a positive attitude and lots of support.
 
I hope you feel you can start threads and chime in any time Cathy! You became a family member immediately.

For a while we had 2 threads for PALS. The roll call which was intended for a still here and brief updates and a chat thread for PALS to talk about anything they wanted that did not warrant a separate thread. Would you all like a chat thread too or keep it all here?
 
It seems that a Roll Call check in becomes a chat! Streamline the process.

Cathy
 
Four days sitting watching the snow pile up , kind of nice but ready to get out side. Feeling grateful mostly

Chally
 
Hi folks I’m back, busy hot summer, spent most of it at the cottage. That is always good, the scooter I bought at the beginning of the summer performed good in all types of terrain. Got stuck once, the rear wheel dropped into a small hole just big enough to hold the tire, but after calling the wife who was vacuming
For 20 minutes she finally shut the vacuumed off and heard me calling,she come out and gave me a push..about 5 minutes later we had a down pour, I was lucky but it was hot out anyway, a shower would have felt good.
Al
 
Still here. Spend most of the day in the chair now.
 
Going to drive back North this weekend for Christmas and my second visit to my ALS clinic. My driving seems ok, but as a safety measure I am flying a daughter down to travel back with us and share the driving. My wife can not drive at night. Timing of purchasing our Winter retreat in March was not good. Will try to make it back in mid-late January.

I was diagnosed in September after having symptoms for 2 years that PCP and neurologist were attributing to neuropathy. The neurologist said that I was too old to get ALS. I am 77. On the bright side, the delay was not all bad as I was able to live a life without ALS for 2 additional years.

Darrell
 
Still here, much the same. My VA-ALS clinic is this Monday and I'm considering stopping Radicava, seeing no apparent benefit. Headed back to Tucson for Christmas with my daughter and spouse. Looking back I was surprised at how much traveling we had done--Tucson, Hawai'i, DC and Virginia, Denver, Ireland and Virginia again.
 
We spent today in Denver for a wheelchair appointment and to see the pulmonologist.

The new wheelchair motors are making a clicking noise, sort of like I would expect from a bearing. Also, the new brakes did not hold me in place when I was onboard a local bus and the bus driver applied the bus' brakes hard. I wanted to get those checked out within the 90 day warranty period.

The appointment with the pulmonologist went well. As long as I am sitting up, CO2 and O2 are OK. FVC is remaining stable, but is quite low. I was happy with the apparent lack of progression in the deterioration in my breathing.

We drove home in a horrendous snow storm. The climb from Denver (5,280 feet) to the Eisenhower tunnel was uneventful. When we exited the Eisenhower tunnel at a bit over 11,000 feet, the snow was blowing hard and the roads were snow packed and icy. By the time we hit Dillon (about 9,000 feet) the roads were really bad. The drive over Vail pass (10,600 feet) was not quit as bad, but still quite challenging. Shortly after we started our ascent up Vail pass we found out the pass was closed to eastbound traffic (we were headed westbound, and that was still open).

My wife and I were both glad to make it home!

Steve
 
Still hanging in there, and here.

Bill
 
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