Have a Magical Day

Hurrica2018-bright-celebrate-230898ne Florence tried to screw with my bucket list. She caused the closure of Disney’s Hilton Head Resort. Related or unrelated to the trip, I had a PBA episode over communication issues so we drove back home ready to let ALS ruin another part of our lives. But instead of ruining the trip, Disney and our hospice representatives managed to move our trip up a few days and now I am comfortably situated in Disney’s Old Key West resort. Those lemons make for a great lemonade, thank you Disney and Duke Hospice for taking care of the big and small details.

We were able to make a short visit with friends from our former church in Hasbrouck Heights, NJ. My PBA kicked in so I didn’t have much fun and I couldn’t get in the house because as all PALs know, a flat entry is never really flat and no one wants to take off the door moulding trying to get in someone’s home.

I spent the first day hanging around the hotel. It’s harder for me to drive the wheelchair now, but we are looking at a possible solution. The second day was a great day. We met with some friends who relocated to Florida. Of course, we had to move inside because Tobii Dynavox does not work outside. Funny how that is is not part of the sales pitch.
Have any PALS come up with a solution for that?

Besides being able to visit with friends, the rest of the trip has been a nightmare for me. I am now stranded in Florida because part of I-95 have been shut down. This was supposed to be my Goodbye trip to Mickey and Minnie and it was not a memorable one. The trip was a nightmare that will not be repeated by me. I know that I should have stayed home. They say you should go with your gut feeling. I guess I should start listening to my gut and stop being so agreeable to other people’s idea of what is fun for me. I only have myself to blame for not being more forceful.

So the lesson to myself is just say no. I would prefer doing something else.

The Transformers

300px-PrimeBeeAs time goes by I feel more and more as if my daily existence is machine dependent.  I am not talking about the usual home appliances.  I am referring to the multitude of equipment that an ALS patient relies on to make their life comfortable and livable.

Since my last post two weeks ago, I have been inundated with appointments.  One of the first was with EMS who arrived to help get me off the floor when I slid out of my lift chair.  I know, not exactly a planned appointment.  I had a new aide filling in for the day who wasn’t familiar with my routine.  I wasn’t hurt, but it did take quite a while for EMS to arrive which was disconcerting.  I was very surprised to learn that the paramedics are not trained on how to use a Hoyer lift.  My aide, however, was able to instruct them and they all worked together.

This incident has made me even more impatient waiting for occupational therapy (OT) to arrive.  You see, it’s time to give the hospital bed another try.  We’ve already dismantled our guest room to accommodate some furniture that will need to be moved out of the master bedroom.  The electric hospital bed is coming back into my life because I have become weaker.  The electric Hoyer will help get me into bed and the occupational therapist will be our instructor.  Then the battle to get comfortable will begin anew.  It’s a real challenge keeping ahead of the constant changes that are the life of a person living with ALS (PALS).

So, in addition to the electric hospital bed and lift, I had a visit from my durable medical equipment supplier who brought me a Trilogy machine and a cough assist machine.  You may be familiar with the terms CPAP and BiPAP.  Trilogy is similar to a BiPAP machine.  It helps with respiratory issues.  In my case it will help inflate my lungs and perhaps increase my lung capacity, but it will also help me get rid of the carbon dioxide that I cannot expel on my own.  It is difficult to expel carbon dioxide when the respiratory system is compromised by ALS.  Too much carbon dioxide can kill me.  It is also one reason why I keep an ALS alert sheet hanging in my kitchen.  It alerts EMS not to give me 100% oxygen.  I found this information at the site www.alsemergency.info and ran it by my doctor before posting.  Now both my husband and I are masked sleepers.

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The end of the month brought the much-awaited speech device, a Tobii Dynavox.  The Tobii uses eye-tracking so I can type and surf the internet hands free.  There were a few hiccups with the delivery like missing mounting poles for my wheelchair and several attempts to retrieve via email the information to unlock Windows.  But all is good and the sales rep is affixing the mounting bracket as I type this.

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I will be spending a lot of time getting up to speed typing by eye and learning Windows again.  Ugh!  All I need now is an appointment-free day, week or month.

In the days that followed Tobii’s arrival, I saw a palliative care nurse practitioner and had a physical therapy (PT) intake visit.  I’m already scheduled for PT twice this week.  My life and home are in shambles.  I have boxes everywhere (empty device boxes, liquid formula boxes), an empty guest room, dust bunnies.  Well, you get the idea.  OT where are you?  I need you so that decisions can be made about where to put everything.  It was very difficult to move to a smaller home just to accommodate ALS.  Adding more stuff to the mix does not help.  Being a little bit of a neat freak (which I didn’t think I was, but have been accused of being), all of this drives me nuts.

The transformation to a machine-filled ALS life began with a power wheelchair.  Now it has expanded to include the Amazon Alexa to turn on and off lights and other cool stuff, a Ring doorbell, cough assist and Trilogy machines, a suction machine, an electric Hoyer lift, electric hospital bed, and my speech device, the Tobii Dynavox.  Half of these machines I am not able to operate alone or unaided.  I thank God every day for the assistance of able and caring people who transform my life into a comfortable existence.