My apologies for the delayed update on this blog, but so many things have been happening, including radio membership campaigns, illness, many doctor appointments, and a visit from my daughters and grandson.
Spirits lifted with family visit
During the first week of November, my spirits were lifted by a visit from my two daughters and my grandson. My daughters, Erica (and her boyfriend Dan) and Emily, and my grandson Caden came all the way from Orlando to spend about a week with me at home. While I was unable to do many things that I wanted to do with them, we were able to spend lots of quality time together.
Emily and Caden were treated to a half-circle tour of O’ahu by my father-in-law, Bruce. They got to see many of the beautiful sites that this island has to offer. It was Emily’s birthday, and we treated her to a family meal at our favorite Mexican restaurant, Margaritas.
I gave them a tour of Magic Island and the Hilton lagoon, and we returned to the Hilton lagoon because Caden really wanted to play in the lagoon. Unfortunately, our day was hampered by a downpour of rain. We made the best of it, and ended up enjoying lunch together.
While it was a very emotional visit, having my daughters and grandson with me, even for just a few days lifted my spirits and my soul, it also filled my heart with joy and love.
Feeding tube procedure
Last week, I went in for a proactive procedure to have a low-profile feeding tube placed in my belly. While I still have the ability to swallow and eat food, having the feeding tube already placed allows me to receive additional nutrition when needed. When the time comes that I am unable to swallow, the tube will allow Jennifer to feed me through this feeding tube.
While the procedure ultimately went well, we did have an issue halfway through the procedure. I suffer from an issue called vasovagal syncope, which causes my heart rate and blood pressure to drop suddently when I feel extreme anxiety during any type of medical procedure. This, in turn, causes me to pass out. I have passed out on many occasions at doctor and dentist visits.
Despite always warning medical personnel about this issue in advance, they’re always caught off guard and think the worse when it happens. Just as the doctor started the g-tube procedure, and because I only had topical numbing, I began to fill anxious about the procedure and my blood pressure started to drop, and sure enough, I passed out. This scared the dickens out of the doctor and nurses around me, and they halted the procedure. Once I came to, the doctor wanted to postpone the procedure, but I insisted that they continue the procedure later in the day, but with anesthesia. It made for a very long day at the hospital since we had to wait four hours to re-attempt the procedure with an anesthesiologist. Once they restarted the procedure and I was enjoying the “happy juice”, the procedure was completed without any additional complications.
I spent the next few days recovering at home with Jennifer, and learning how to flush and clean the feeding tube.
Renovations are finally underway
The bathroom renovations, which we have been planning since this time last year, finally started last week. We are converting the bathtub to a curbed, walk-in shower to allow me to roll into the shower with Jennifer’s assistance. We’re also adding a new toilet with a built-in bidet. We expect these renovations to be completed by year’s end, which will be a welcomed asset to me.
Additional equipment support
After a recent reading test showed that my breathing capacity had dipped a little (but still within normal range), my pulmonologist prescribed a trilogy breathing machine for me to use when needed. The machine will initially be set-up for sip ventilation (kind of like a straw for breathing), which will allow me to suck in a breath or two when needed. We’re still in the process of having the machine ordered and delivered, but it will be an important piece of equipment to assist me when needed. I occasionally find myself out of breath if I talk too much, but otherwise my breathing continues to be fine.
We’re also working on getting an eye gaze machine ordered for my use. Currently, I’m using voice-to-text technology since I am unable to use my hands to type. Because I’m using my voice more to write emails and memos, I experience voice fatigue and loss of breath. Having an eye gaze machine allows me to use my eyes to scan a keyboard to type out messages. If and when I lose my voice due to ALS progression, the high gaze machine will allow me to use my already banked voice to communicate.
Technology with high gaze machines has really advanced to the point that it will allow me to control my computer at work and other devices at home. We’re currently working with my speech pathologist to work up the order to receive the equipment soon.
I also started using an external catheter a month ago. We first were paying for these catheters out of pocket, but thanks to Jennifer’s determination and with help from my medical team, we’ve just received a three-month supply covered by insurance. The external catheter allows me to go to the bathroom when needed and wherever I am, giving me peace of mind.
Mahalo to everyone
I want to thank everyone who continues to send me notes, emails, and cards of encouragement and love. They mean an awful lot to me. I also want to thank my “lunch buddies” who have come to my office to help feed me. And, Jennifer and I thank the amazing team of friends, family, and colleagues who continue to provide meals during the week to help us take the load off Jennifer from one additional task she has to do.
Jose, I’m SOO glad to get this update from you, and to find out how you’re coming along.
I’m delighted that your daughter and grandson were able to come visit. Family is always a booster, i.e., you’re eagerly anticipating their visit and all the fun you’ll have while they’re here; then they get here, and even though it’s wonderful, it’s also a little tiring. Then when they leave you have loads of great memories of the fun you had with them, how nicely they’re progressing and growing, and how proud you are of them.
All the great technological advances you refer to are mind-boggling. It’s also just terrific that these super inventions are available and that your “team” is aware of them and are seeing that you get the very latest “gadgets”. Hooray for them, and hooray for you for getting to have them! How lucky that you’re living in the US and can have all these amazing tools; if you lived in some parts of the world these miracle inventions would only be daydreams.
I turned 90 in August and my kids and grandkids all came to Hawaii and had a splendid party for me. Because of covid, we had it outdoors in the gorgeous backyard of a former neighbor. The neighbor said her only restrictions were that no more than 60 people could be invited. I’ve lived here a looooong time and have LOADS of friends, so it was really tough to limit the guests, but that’s the way it had to be. The party was sooo lovely, and my kids (2 men (66 and 64), 1 woman (62), and grandkids 2 women(26) and 1 man sorta (21) were all here and did a bang-up job. I am so lucky to have such a great group of kids and grandkids—and they all get along!!
I love my kids dearly, but they did an “unforgivable thing”——they took away my car and carkeys, so I’m no longer driving. Clearly it was for my own good, but not being able to “go” when and where I want to “go”—-be it to drop in on a friend, to run to the store for one item, etc.—is just awful! I’m getting more patient, I must admit, but I still miss my sweet little Leaf big time. Because of my lack of wheels, I’m not able to volunteer down at KHPR during the fund drives; nor am I able to do a lot of other volunteering as before. I must say, though, that Zoom is a fabulous tool, and has saved a lot of folks a ton of time (to say nothing of the reduction in travel wear-and-tear around town!) in not having to drag around to meetings, etc. Board meetings for the boards on which I sit are all on zoom now. So are Rotary meetings. It doesn’t compare to the “warm and fuzzy” of hugging a friend at a meeting, but……
Of course I still listen to only one radio station 24 hours a day. It seems to be doing just fine, but I’m sure they’d love it if you could be cracking the whip like you used to do…….
Keep on keepin’ on, Jose. You know that your friends are with you in any way that we can be. Just put out the call if you need us.
Fondly, and with enormous aloha, Alice
Glad to hear from you again so happy that your family paid you that visit. Take good care
Tony
Thanks for the update. It is refreshing to see how positive and open to sharing your experiences you are. No doubt your trek will help others down the road. I have not met Jen yet, but our covey of KNCT friends have and they told me she is a jewel. From all indications that is spot on! Stay positive and best of luck to you both.
Aloha amigos! Brad
Dear José,
You and Jennifer are a great team and such an inspiration to all of us, your friends and colleagues. Sending mucho cariño, aloha, and blessings to both of you.
Sending love buddy. Those hospitals can be very cold! I always ask for another blanket.
God Bless You & Jennifer – I am sending prayers and love 💕 to both of you!
Love, Cindy
You are in my prayers friend.
Dear Jose, you continue to amaze me and inspire me. Going through all these different things in your condition must be such an added challenge and you keep rising to that. I’m really happy you have such an amazing family around you and even the ones who come to visit. Because you really matter! 💜Sending positive prayers from Maui. Vika
You’ve come a long way from the KTON days. Sorry about your setbacks and happy you have found work arounds to keep going. I retired a few years ago. Call if you need me. We have some great stories to tell.
So wonderful that those Florida cherubs blessed you! The renovations and tech will also be! Reach out when you need a hug!! I love you both! Stay positive!!
Keep up the positive attitude superman! Sooo very glad Jennifer and team are there. Are you on the new drug the FDA approved?
I still have your voice imprinted in my head after years of WMFE fundraisers!
You keep ROCKING as you always have done my brother. I may not be in presence with you in Hawaii, but you can rest assure that in prayer and love I’ll ALWAYS be there for you. Te quiero un chorro Josean!!!
Thank you for the updates! You are such a fighter and an inspiration. Miss you!
Jose, It seems a lifetime ago that we were both in Orlando and please know I’ve been watching your successes from afar. Your positivity, strength and realness leave me in awe. I am sending you and your family the very best. Wishing you all the happiest of holidays.
Jose,
The picture with your family is precious. You are truly an inspiration, my hero.
Hugs,
Kim
As I write this, the world is sharing love with one another on Christmas Day. I want you to know that you are always in my prayers, my friend. You have always been one of the brightest spots in my life and there is not a moment that doesn’t bring a silly grin to my noggin whenever you cross my mind. The challenges ahead are daunting, but there are few people I’ve have ever known who have a stronger will than you, José. May Almighty God continue to shine His heavenly light upon you. Love you, my friend. You got this!!!
Remember… !ttuP ttuP yalP I