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

Like Betty and Ed, I have also had to get used to wearing a bib and being fed. We do what we must. :)

Also like SuziQ I have been a problem with "belly gas", but it has become chronic (though worse after eating). Makes breathing very difficult.

Steve! It seems like it shouldn't have to be that hard. Ugh. :confused:

Best to all,
 
Right you are Bill, we do what we have to. It's been 3 weeks since I had my peg placed all is going well with it. It takes me 10-15 minutes to do a feeding. I've put on 2lbs.
My legs are feeling alittle weaker might be time to think about using a rollator.
We're getting ready to go to Ohio next week for 3 months. Hopefully I can spend some time with Cathy(blitzc). Looking forward to it. I'm hoping the weather starts to warm up.
 
Hi all - Checking in on a Wednesday, after a few months away. Good to hear how everyone is doing. We didn't have much of a winter here in Southern California - was hoping for a good ski/snowboard season, as I never know when it will be my last (other than the Steve method!) But alas, we had nearly no snow this season in California, after one huge storm over Xmas, where we got stranded in Tahoe and couldn't enjoy the mountain anyway. But nothing really Jan-Mar, which was disappointing.

My progression continues at its slow place, though my right arm/hand has definitely progressed this year. My doctors noticed it at my last clinic visit. Keyboarding and holding things with my right hand is now challenging - but I'm being lazy about adaptive techniques. Or maybe just stubborn. The rest of me is holding up OK though. Legs still good, though my left one is slowly starting something. But super slow going thankfully. Speech and swallowing still good.

My oldest son graduates from college this month. I don't know where the time went - he was only born in 2000. Wasn't that, like, yesterday? Middle son enjoying freshman year at Cal Poly SLO. Youngest boy still at home, high school sophomore. My goal has been to retain the ability to climb the stairs of my 2-story house, thus enabling us to remain in place, until the last boy leaves the nest. So far that seems reachable, though of course one never knows with this disease.

Eric
 
Checking in, though nothing worth reporting. The acid reflux I was experiencing with tube feeding seems to have been alleviated by slowing the gravity feed (based on advice from the VA nutritionist. Leave for Iowa in 2 and a half weeks. Wondering how our new dog will adjust to our acreage there after spending all of her short life in a desert.

Ed
 
We just arrived home from a trip to the Grand Canyon. I will write more later. For now I will note that I am very tired. I can do less than on our previous trips, but progression is still slow.

It was well below freezing the first nights of the trip and snowing when we pulled up to our house!

Steve
 
Steve, was this trip with the motorhome? If so, glad that the issues were fixed quickly.
 
Kevin, yes the trip was with the motorhome. Once again, quite an adventure. We are starting to get things sorted out, but as you well know, there is always some new issue to fix on a motorhome. I plan to start a separate thread under stories of hope to let everyone know about the trip.
 
Hello friends,

Just checking in to see what's been going on. Steve, it does my heart good every time I hear you've gone on another trip.
I look forward to hearing more about your trip.

Happy Mother's day to all the moms and to those who are honoring their mom.

Here's a picture of my Mom when she was in her 30s. My brother looks exactly like her. I look like my Dad.
 

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@EricInLA So are you still skiing/boarding in the normal way? I'm wondering if I might just get a chance to ski in August this year (New Zealand) or Japan in January if the borders open. I'm walking but slower and slow up stairs, and progressing slowly so maybe I am mad to even think about this. Our big 7 week UK Europe blow the budget trip starts this Friday and I am excited. I have dictus splints to help - has anyone found them useful before?
 
Another Wednesday has rolled in. I haven't been able to post for about 2 weeks, must have been a glitch in the system but I'm glad its fixed.

We arrived in Ohio about 2 weeks ago. The weather has been crazy, in the 80's one day in the 60's the next.

I'm so glad oral radicava was approved. I spoke to my neurologist about transitioning from infusions to the oral form. He said they hadn't heard anything on availibilty yet but thinks it will be soon. I also wonder what the cost will be? Presently I'm charged $7,600.00 for each infusion times that by 10 days of infusions and it adds up to a pretty penny. Between Medicare and my private insurance I pay $0 so I'm curious if I'll be charged a co-pay for the oral version?
 
Hi everyone,

First time posting in this group, but I figure I would start my own pulse check since all of you have been so amazing and helpful on my journey so far.

My current goal is to get myself set up over at my Dad's place from my current place as there are fewer opportunities to get sick there and we're hoping that my dad can eventually get paid to help me live as independently as possible. After that, here in a few weeks, I have plans to travel over to the United Kingdom, as 1. it's on my bucket list, and 2. my Loving partner lives there and I wanted to see them at least once before I lose too much ability to do so.

I feel like I'm being diagnosed at a rather opportune time (as ironic as that sounds) as Oral Radicava was approved so hopefully my insurance will help me with the costs on that so I can do both medications (Riluzole+Radicava) to slow this thing down as much as possible to give myself, and my caretaker (Dad) time to get used to the "New Normal" instead of having to do things crash course style.

I'll try to post here when I can, and again, I'm thankful for you all.

- Joanna
 
Re oral edaravone I think for those with medicare it is going to be a part d drug. Whoever covers your regular meds I think it will be a PA With cancer on medicare if your oral drug is the same drug as an iv version it can stay part b when you switch but I do not see any loophole for a non oncology drug. MTPharma is holding a webinar I posted and mgh has said they will update their patients as they learn more. I will pass on anything I hear
 
Posting gets ever stranger. My friend LisaG that just posted above is once again locked out from posting with the message (“waiting to verify email address”). No email verification ever arrives.
 
I know that people have run into trouble in the past if they've signed up for email digests and one of them has gone to spam folder. That'll bounce back to the forum server and then sign in problems can happen.
 
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Since this seems to be connected to email updates if you can’t stop them going into the spam folder anyone who had an issue might consider going into your account and unsubscribing from the updates. I think that would stop it happening again
 
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