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

[SpeedyMarie]

9/04/2019. Hello from hot as hades Houston. Still waiting for fall. I’m glad from cruising this forum Riluzole is cheaper at Costco with a good rx card. Yay! ADA and disability I’ve been wrapping my head around it. It’s a lot for all with ALS but new PALS it’s a whole new world. One a happy note My husband turns 50 this year I’m going to flock him. Happy Flocking Birthday. He’s an October baby so it will be crows and a vulture or two instead of flamingoes. I have plaster of Paris and a crow mound I’m going to get my gimpy left arm to help out playing with mud lol. I need to make 50 crows... where to hide them hmmm

 

[Signe]

Wednesday check in, I'm here. I feel a change in me working. My fingers feel "stupid ", for lack of a better word. Right shoulder feels like its dropped or something else like that. I can lift my arm straight up but I can't hold it there long without it shaking. But on the other hand, my AHI has improved and I can still do everything that I need to do, but much slower and with more attention to how I'm doing it.
Last Thursday the ALS Foundation representative was here. Pleasant gal, I liked her a lot. However, her being here made this all seem more real...I thought I was accepting this pretty good, but its been a rough week for me since. The long holiday weekend may have been too quiet for me. Gave me too much time to reflect.

 

[blitzc]

I’ve come to realize that “standard” ADA accommodations are no longer enough for me. I’m thinking about starting a thread “too disabled for ADA”. Most PALS probably reach a point where standard ADA just isn’t sufficient.

I totally agree with your thoughts! Being out of the house for any reason, particularly for travel, is a royal pain! My issue is with toilets.

I am planning a quick trip to Gettysburg with my daughter next week. We have never been there, so just said "Let's Go!"

I am trying to stay busy with school back in session and me sitting at home now. It would be so much easier making this transition to retirement if I could get out on my own.

 

[KarenNWendyn]

My issue is with toilets.

That’s a huge issue for me too. I’ll start a thread later when I have more time.

 

[nona]

Still here in NH, where the nights are starting to feel fallish. I'm spending less time on my computer until I can get this neck pain resolved. Oh, and I got a new cat, who was rescued from a junk yard. One eye, deaf, ears damaged by frostbite, and he can't meow. I haven't named him yet, but I'm open to suggestions as long as I can say them.

 

[lisa g]

Even with his disabilities I find him gorgeous. Is his coloring gray or is he a multi. I tend to give my cats people names. I have a new stray that's so long and thin my husband started calling him Slim Jim thus he is now called James.

Your boy looks like a Rex, or George to me.

 

[Signe]

Still here in NH, where the nights are starting to feel fallish. I'm spending less time on my computer until I can get this neck pain resolved. Oh, and I got a new cat, who was rescued from a junk yard. One eye, deaf, ears damaged by frostbite, and he can't meow. I haven't named him yet, but I'm open to suggestions as long as I can say them.

I think that the only name for the new cat is Lucky. Lucky he/she's got a new owner and new life.

 

[KarenNWendyn]

Lucky sounds good to me too. Congratulations Nona.

 

[nona]

Even with his disabilities I find him gorgeous. Is his coloring gray or is he a multi. I tend to give my cats people names. I have a new stray that's so long and thin my husband started calling him Slim Jim thus he is now called James.

Your boy looks like a Rex, or George to me.

He is solid gray.

 

[blitzc]

My daughter rescued a litter of kittens of which only one survived. We named her Lucky.

I think that the only name for the new cat is Lucky. Lucky he/she's got a new owner and new life.

So I agree with Signe, Lucky!

However, he does remind me a bit of Mad Eye Moody from harry Potter. So perhaps Mad-eye!

 

[KimT]

Nona,
There's a big place in my heart for people who take in the ones nobody wants. I hope your new kitty gives you lots of joy.

 

[Clamdigger]

I had my clinic at Hopkins last week and my breathing has improved. Well, probably not since I think a lot of it depends on how much energy you have that particular day, but it was still better then being worse. Other than that, everything else was about the same.

I've decided it's time to stop working as it's just gotten too hard to get through the day. I'm shooting for Sept. 27th if I can get all the paperwork done.

To have to stop working is hitting me pretty hard. It's the 1 more thing syndrome. That's 1 more thing I can no longer do.

 

[KimT]

Clamdigger,
I think, once you stop working, it'll be a relief. You can use your energy to do things that make you happy.
Good news on the breathing front. I do best first thing in the morning, before I've eaten. There are so many variables, including the equipment and the "operator."

 

[Clamdigger]

I'm sure you're right, but it's hard to give another thing up. I actually love my job.

 

[Signe]

Wednesday again, rain here this morning and lightening as well. My kids all have sore throats, so they are avoiding me not wanting to share it. Our Iowa weather this week has gone from needed the furnace on to needing AC, in a twenty four hour time frame, which contributes to people getting sick. I should probably get a flu shot soon, so will see when they're available. My father comes to see me every day, he's 84. I have a hard time with his visits, as he makes me cry and feel sad. Hard to explain I guess. He always ends up talking about my mother and then my tears flow. Mom had ALS as well, limb onset, my dad keeps comparing her progression with mine. I tell him it's not the same but he doesn't understand it. I'm bulbar onset so my mobility is good and from a distance I appear just fine. It's so difficult at times. With his hearing and my voice we're not in a good place for conversation. He cries, I cry, it goes on like that.
On the brighter side, I received a vitamix blender from the ALS Foundation closet. Going to blend up some new recipes I found for different soups. Even found a recipe for pizza soup. I hoping it will taste good, I haven't had pizza for the best part of a year. I'll let you know how it comes out.