Narrowminded

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So glad you have found some kind of work around with the meds so you can breathe a bit.

Just know I’m sending huge hugs.. This is not an easy time.
 

lgelb

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Specialist staff are often not great at rx logistics. You might consider switching his rx over to his PCP or someone with more infrastructure around e-rx.

So sorry you are going through both sagas at once...

Re the wheelchair, it's a Permobil, right? Numotion should call the Permobil rep, who should get expedited fulfillment/shipping if Nashville knows it is for a PALS.
 

Jrzygrl

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Successful trip to our local drug store. The pharmacist was great. I was able to get a 30 day supply. Ah, I can breathe!

Laurie - He's on multiple medications prescribed by his neurologist. I'm hesitant to switch them at this point. I just have to be more vigilant about refills.

The NuMotion tech was on the phone with Permobil while diagnosing the problem. They got the wheels in motion the same day. Tried calling NuMotion Friday, but they must have been closed for the holiday weekend. On my list of calls for tomorrow AM - along with the case manager at the ALS clinic.

Thanks all.
 

affected

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that's a good start - in a pinch you could be sure not to run out. so many things to juggle!
 

lgelb

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Oh, I didn't mean you should change his rx. Usually a PCP is OK to pick up from the neuro and they can still consult. But I understand your hesitation, and glad you have a plan and 30 days!
 

Jrzygrl

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Yesterday was hard. When I was getting DH up and ready for the day, he looked at his PWC, cried and said, "I don't want to get in that chair." I know he meant he wanted to be able to move on his own. It used to offer him some freedom, but now I feel he is seeing it as a prison.
 
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Narrowminded

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Hugs Jrzygrl. I know that was so hard for you and for DH. Watching them decline like that and get more and more confined is so very hard.
 

affected

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Sending hugs too - the reality can just hit like a slap can't it 😢
 

ARCG

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My DH hates the pwc. It is so hard to watch his frustration with this illness. My heart goes out to you .
 

lgelb

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I'm very sorry.

There is a time when the world gets very small for PALS, sometimes smaller than it really is, but it's a self-fulfilling prophecy, and we are passengers.
 

Jrzygrl

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I had a weird experience yesterday. DH's aide was here, so it was my day to get out. I had a bunch if errands to run. By lunchtime, I realized I hadn't eaten and was starting to get a headache. I stopped to grab a bite. There were people bustling all about. It wasn't crowded, but busy. People on their lunch breaks, families and retirees getting together. I felt separate from all of it, like I was in a different universe and not a part of anything.
 

ReginaS

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I know what you mean. ALS put me in a different universe. Not sure I have come back yet :cool:
 

Ken15

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I felt separate from all of it, like I was in a different universe and not a part of anything.
Agree, completely - more like a parallel universe. You look for slices (30 min to 2 hrs) of time to do things while your PALS can be un-attended.

We had a pretty good separation of duties: I did all the yard work, lawn maintenance, vehicle(s) care, repair and maintenance, all grilling, food shopping, paid bills, and pots 'n pans after dinner, and my PALS did the laundry, in-house cleaning, bedding changes, most of the cooking, dishwasher stuff, etc.

We shared the dog care (she met most of her friends in the community walking the dog :)).

Now, things have to be prioritized into those precious little time slots. I used to wax the cars 2x a year; they haven't seen wax in 18 months and I'm lucky to give them a wash. I'm constantly behind the curve in yard work, bush trimming, etc. And, it's not just a question of affordability. I grew up maintaining my family's yard and wrenching cars (whenever my sons visit, we always do maintenance or mods to one of our cars) - I enjoy doing it. But now, these activities are at the bottom of the priority list :confused:.

And, it's almost like it is NOT a conscious decisions to let these things go, there is just no time left after PALS care and doing the higher priority tasks.

As Karen has said before - this disease REQUIRES a constant effort to shift priorities and adapt to emerging needs.

Ken
 

affected

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I had a weird time where I felt like I was invisible to everyone because of that feeling of separation from the world. I would walk through crowded shopping centre and just feel like I wasn't quite real but everything else was. I had partly forgotten about that, and realise it did fade and go away at some point.
 

Narrowminded

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I have felt that so many times. I’ve called it alone in a crowd. Even at church where it’s people I know.

Ken and other’s I just told my son and DDIL that I need to put dusting on my planner. I haven’t done it much in 14 years. My DMIL came weekly and did my house keeping, and now I don’t even think about it until I look at something and say Oh my that is dusty. Most people would think, how do you forget that? Well other things took too much priority.

Jrzygrl - I hope eventually we all feel more “normal” and back as part of the crowd, be it friends or just other mall shoppers. I know Christmas Eve family get together that I could finally attend this year, I could not wait to get out of there. It felt totally overwhelming after being “alone” for so long.

Hugs
 
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