CALS Roll Call Continued

I don’t even believe they know my husband has passed away, They never contacted us again after he went on hospice or shared results with us about the trials he participated in.
 
When my husband was hospitalized ~18 mo.s before his death (same nationally-recognized hospital as the clinic) with a near-death bleed, no one from the clinic called, showed up, or otherwise showed a flicker.

Despite several clinic visits, there was nothing in the EMR resembling status notes, so I had to beg for applesauce to crush his heart/diabetes meds in while staff blustered that they weren't going to let me administer them (dream on -- he had three active aneurysms), stay up 24/7 to intercept lab techs who wanted to move him like a puppet despite two subluxated shoulders, and he wasn't able to transfer to a bed because they withheld use of their Hoyer because the nurse didn't approve of our transfer method. My son and I used the cushy bed like a couch and my husband sat in his wheelchair, bleeding. Oh, but they were kind enough to supply distilled water for the BiPAP.

We left against advice as soon as infusions were complete, and of course, never returned to the clinic.

I know there are exceptions, but the best clinical setting for a PALS 99.9% of the time is at home. My advice to CALS is therefore, get equipment orders as early as possible, so you have that flexibility.

Best,
Laurie
 
Mary likeDarcey my sister used Dragon but her voice went fairly quickly so she went to eye gaze. talk to your clinic about an appointment to at least discuss options for the future. Mass General sends their patients to a program at Children’s. see where your clinic recommends. in the meantime there are various talk to text options for computers tablets and phones. I use dictation on my ipad a lot. It has more sophisticated accessibility options too

there are other things that might help with weak hands but still mobile arms. You might look through the tips and tricks section but also talk to the clinic and ask to see the ot. there are lots of little gadgets you can get

another thought is setting up , as much as you can, a smart home. Controlling lights, temperature and more. Even if you are there all the time it is nice to be able to do things oneself

I also sent you a pm with some links
 
My husband had his voice til the end, but no use of any of his extremities.

As, Nikki suggested, think about setting up a smart home system. It doesn't need to be complicated. We had several different Alexa units, a bridge that connected the ceiling fans to Alexa and smart thermostats. These allowed him to watch TV and set up his environment. It allowed him a bit of independence.

Also, you might want to look into a head controller for his PWC. The parts took a while, then there was a learning curve for them. I had the chair's joystick moved to the back to act as an "attendant" control when he got the head controller. I'm really glad I did, because there were circumstances where he could not maneuver with enough precision ( ex. getting in/out of our can) to do it on his own.
 
Nikki J .....Thank you for the PM. My PALS and I are reviewing the list now. I can't find a way to PM you back. Appreciate the list very much. Thank you Jim and Jrzgrl. We are looking at Apple Dictation software and it is good to know there is a head controller for the PWC. We need to explore if Alexa can turn the tv on.
 
No worries about reply. Maybe you can’t reply. I think the software changed and you need more posts to reply not just to send pms

you can do a lot with smart plugs though there may be a more sophisticated choice as well for tvs. With a smart plug you just name it and then say Alexa turn on —- It isn’t very hard at all to set up
 
@Mary2 ,

We used Amazon's Fire Cube. In our environment, we had internet access to Netflix, Amazon Prime, YouTube, Hulu, etc. We also had Verizon FIOS for our TV channels. Additionally, I had an Onyx receiver that sorted all of that stuff (connections) out for us. Unfortunately, Darcey could not use the remotes. She could, however, say - "Alexa - Turn on the TV". And our Fire Cube would reach out and turn on the TV, the Receiver and the FIOS Internet TV box. Once one she could say, "Alexa... tune to MSNBC on Cable" or "Tune to BBC on Cable" and it would turn on one of her favored sources of news. She could also tune to Netflix or Amazon Prime, but she actually preferred them to play on her computer and its display. When her voice weakened and she had to move to EyeGaze, she created phrases for the EyeGaze to convert to voice that would instruct Alexa to do her bidding.

This is but one of many methods of controlling items. Darcey would often have several things going at once. She said, "Keeping my mind busy and engaged is what keeps me going. Take this control away from me, cause me to lose the ability to distract myself for the reality of my ALS, and you'll find me close to being done." This, unfortunately, actually proved to be true.

Keep asking. See what each of us who have gone before have used... and used successfully. Find the choice that you think might work best for the two of you!

My best...

Jim
 
Yes, we also used the Amazon Fire cube for the TV. We had it set up so he could turn the tv on, and switch between our cable provider (Xfinity) and all the extra "smart" channels, Netflix, Hulu, etc. using only his voice. We also had his sound bar hooked up. He could listen to music with a decent sound system that way. He was also able to stream DD2's college graduation, since he decided the trip would be too difficult. If you have difficulty setting it up (it's not hard, but ther are sometimes hiccups) Amazon has a support team that can talk you through.

The fire cube is an "Alexa" device. He could use it to call me by using the "Announce" or "Drop in" skill. We got an ecobee smart thermostat that could also be activated by Alexa. He would simply say, " Alexa, set the heat to 77" (He was always cold. Luckily, we has a sunroom with a separate heating/AC unit.)

The device we used to connect the Alexas to the ceiling fans was a "Bond" bridge. He could turn it on and off with "Alexa, turn on the sunroom fan".
 
Wow, some of you have had some pretty terrible experiences with your local clinic, especially Laurie. I can't imagine how they could have been so cavalier and heartless with your husband's dire situation. And Annie, for your clinic not to even know your husband passed away, or have known and given you you no indication... sad.

We, like many of you have shared, phased out clinic visits a few years into the journey when it became untenable to get my wife in there, meet her needs while there and accommodate the rather lengthy timeline of the various clinician conversations. Like Jim has indicated, there was value early on for in-person visits when we had so many questions and great need for direction.

That being said, my wife's nurse, the director, and others at our particular clinic remained intimately involved in our lives as we carried on... all the way to the end. They were truly there for us for virtually anything we needed. But the real game changer at our clinic was that they had a primary care physician on the team who became Nicole's primary. She was there on clinic days and the last person on the rotation. She stayed with us until the end, even though we no longer visited. She made house calls, changing Nicole's trach while she sat in her recliner, came and inserted a new g-tube a couple times when hers popped out on me. She would show up within the hour, if humanly possible, if I had a more pressing need. She was a wealth of information and showed extraordinary compassion and concern for both our well being.

So, we were clearly really lucky to have such a caring and well run clinic less than 1/2 hour away. I hope you have a similar experience Mary. In any case, you are at the right place here. With all the great advice people are sharing, the forum is like a clinic in many ways.

All the best...Jon
 
We were also very lucky to have some amazing health professionals that supported us. Our clinic was in another state so they couldn't actually coordinate services for us and the trip was too tiring.
We ended up with a team that were not part of any 'clinic' and each one hand picked and extraordinary.
But we had to weed out pretty brutally to get there.
 
We've gotten great care from our VA clinic too. Taking a break from the clinic visits is just because of our "appointment fatigue" and not needing anything from them currently. But we feel that if/when we do need something, they are always ready to help. I actually feel a bit guilty for not wanting to do the visits because they are so nice and helpful!
 
Thank you all for all your input. We appreciate you all so much! I don't know yet what we will do. Hopefully Medicare will continue to cover TeleMed visits for awhile because of the pandemic. I worry that if we switch to the local ALS clinic or a local neurologist that this practitioner will not renew the Riluzole if we don't go often enough. Also since PALS had original diagnosis of Axonal Peripheral Neuropathy he is on Prednisone and Emory said he could continue with this. Another MD might want to stop the Prednisone. The Prednisone does help PALS. I guess I am just worrying in my head too much. I need to relax.
 
Most docs will refill anything medically indicated if you have seen them in the last year. Typically they will write for a year's worth at a time. There can be narrower periods for opioids.

So you could keep the pred rx with Emory if need be, and so on.
 
Mary, we have both a primary care physician and the ALS clinic staff; for routine medications we ask the primary care dr. We are continuing with televisits for the most part as it's so much better for PALS not to have to come in. Thus far I don't see that changing unless an office visit is necessary.

We've finally gotten out of the June gloom here and are having sunny days. My PALS likes to be outside in the sun. Last Thursday I took him to Miramar Lake and we went around the entire path (5 miles). It's the farthest he's traveled in the Permobil.

I'm having to rearrange my respite trip idea in September as our caregiver has planned a vacation that overlaps it. Also his friend has been acting strangely so I can't count on him any longer, but that is fine. I told my husband last night that if something were to happen to me he would need to have hired caregivers in any case. If this weren't a long-term situation I would feel differently. I still feel badly about trying to get away.

Other than that not much has changed.

V
 
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@vltsra - I would never have thought that "getting away" was something I'd be able to do. And then it was announced that David Gilmour (Pink Floyd) was on tour and would be coming to Madison Square Garden in NYC. Darcey said, "You have to get tickets to this... whatever they cost and however you need to get them. If you can get tickets, we'll figure out the rest." She knew that I was a HUGE David Gilmour fan. I would never have suggested going... but she insisted... and insisted... AND INSISTED.

I talked with my son, Jim, who lives in Brooklyn and asked if he'd like to go, if... I was able to get tickets. I don't think he could have said "YES!" any faster than he did. And so ticket sales day arrived. Jim and I were both at our computers, ready to get in and buy a pair of tickets. If we both were able to buy tickets, we'd see which were the best seats and sell the other pair. Ready, set, GO!

The entire Madison Square Garden was sold out in less that 3 minutes. Jim was not successful buying tickets. But I was! I scored two great tickets. I... we... were going to see David Gilmour in concert in New York City! SUPER WOW!!!

So now, we had to figure out what we'd do. Or so I thought. Apparently, Darcey had been working on it already and had commitments from enough people to rotate in overlapping shifts, 24/7 for the 5 or 6 days that I'd be gone. All that was left was for me to get my train tickets purchased and to cycle all of our friends (who would fill in for me) through some home training.

Nobody could be more excited than me. Right?!? Wrong! Actually, DOUBLE WRONG! I would be seriously misleading if I didn't say how extremely excited Darcey was... for all that had happened up to this point... and for what was left to happen. She was excited for me and she was excited for herself. She had been searching for a "BIG GIVE" for me and this was definitely it.

To keep this from becoming another "JimInVA Novella", I'll summarize the rest. I had wonderful, peaceful and easy 8 hour train rides in both directions. The concert was every bit as awesome as I'd hoped it would be (and was for both of us). Jim gave me his bed in his apartment. And he took me to every favorite food place that he frequented in Brooklyn. I ate some amazing food. Jim wanted me to take back to his Mom (Darcey), just how well he was living, taking care of himself and eating.

On the home front, everyone arrived and did exactly what they signed up to do... and everything went without a hitch. Or that is what they told me. I wasn't aware of how good it is to get away until after I got back. Darcey was glad to have instigated "the event" and was elated to have me home again. As she would often say, "no one else does it quite like you". And me... I returned refreshed, relaxed and mentally/emotionally cleansed and recharged.

In summary, we both relived my short adventure many times after doing it. It was the source of many additional smiles.

My best...

Jim
 
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