DeAnn R

Sorry to hear that. Sounds like you’re doing everything right. Fingers crossed if you get it it’ll be mild like mine was. Just keep on top of any breathing treatments. You can ask your doctor about Paxlovid or monoclonal antibody treatments if you do come down with it. I don’t have experience with either but know that seems to be an early…[Read more]

My iron levels have been low, although I’ve never had an infusion. I’m supposed to take a supplement, but am not very consistent. Have you heard of Iron Fish? Apparently you boil it in water to infuse your water with iron. I’ve thought about trying it since I do water flushes with my feeding tube. Not sure if I want to hassle with it or not.…[Read more]

Great question. Surprisingly it doesn’t drop as drastically as I anticipated, but it is noticeable. On days when I use it a lot I drop bars quicker than if I don’t.

If it’s over 40 years misery must love company, lol! Genealogy is always interesting. There used to be a couple good shows based on ancestry too. I think one was called “Who Do You Think You Are?” The other was only on for a season but this gal would use genealogy to solve crimes. I don’t remember the name of it. She was pretty good at…[Read more]

Like you I only use nebs when I’m under the weather. I can see where regular use could be beneficial though. If I don’t see an actual benefit it’s hard for me to stick with it. Sometimes I forget maintenance is important to.

Again, I haven’t really noticed any significant changes. That bodes for swallowing as well. My neurologist suggested a swallow study to see, but I don’t feel like I would pass anyway so I’d rather not hassle with it.

I’ve been on Evrysdi for about a year and a half after switching from Spinraza.  Personally I felt better on Spinraza but the difference isn’t enough to warrant switching back.  I haven’t really noticed any significant gains in any areas.  No significant losses either, so that’s a win in my book.  My GI issues are being managed with Imodium.  That…[Read more]

Hey Robin!  Nice to have you here.  I remember chatting with you through some of those online get togethers.  We have an awesome community.  Feel free to chime in anytime.  Maybe us old timers can teach the young pups a thing or two.  Or, as you alluded to, learn from them.

What other hobbies keep you busy?  Sounds like you like to be on the go.

Gosh, this is certainly a heavy topic.  Honestly I never expected to outlive my parents.  When Dad passed away it was a real shock.  Sometimes I joke with Mom it’s  a crap shoot who will outlive who between us.  It does make some aspects of future estate planning difficult though.

It is tough losing friends.  I was just thinking how I’ve misse…[Read more]

That’s why I love this group.  Such awesome ideas!

Ha, I almost bought a top that said, “Homebody,” except they were sold out in my size.  That tells me we’re not alone in that sentiment.  I like your reasoning.  Family and loved ones are important.  I always hope if it’s an event like that I forgo they’ll have an added understanding of my situation.

Thanks Kip!  It’s tough when there’s so many things I want to do.  I’m trying to be okay where I’m at.  Like you said though, we have to remember how we got where we are today.  For me that means forgoing the concert, but not being afraid to push the limits the next time an opportunity presents itself.

Love the idea of a live-in caregiver. For the two reasons you mention though, space and patience, I don’t think it’s right for me at this time. I’m always waiting for my pa’s to come, but I can’t wait for them to leave.

Lately I’ve been thinking about how to restructure my care plan to draw in more candidates. No luck so far.

Yes, keep on keeping on despite the hardships. Thanks for your input Pamela.