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Trip #5

Living with ALS, Research and Clinical Trials / December 13, 2021 by José / 7 Comments

We recently returned from our most recent trip to Dallas for my 8-week clinic visit as part of my participation in the Healy ALS Platform Trial. Once again I was put through a number of physical tests to measure my muscle strength in my legs, arms, hands, and fingers.

The appointment also included measurements of my lung capacity, a dozen blood tests, and a second round of meningitis vaccination shots.

I also received a new gadget — a Spirobank Smart spirometer — that allows my doctors to monitor my lung function remotely through a mobile app on my phone.

And of course, we received a new (and even BIGGER) batch of daily shots to bring home this time since our next clinic visit won’t be for eight weeks.

While my lung capacity continues to be very strong, I continue to experience increased weakness in my arms and legs. Specifically my left arm and hand have become so weak I can barely use them for day-to-day activities. I rely mostly on my right arm and hand, but every day they become weaker, too. I rely on Jennifer more and more every day to help me with day-to-day activities like getting dressed and undressed, cutting food, and helping me in and out of the shower.

While my legs are still working, I’m now 100% dependent on a walker to get around. As noted in a previous blog we are already in the process of having a customized motor wheelchair prepared for my future use.

During this trip we took advantage of a wonderful gift from our friend Jan who gifted Jennifer and I a one-year membership to the Dallas Museum of Art (DMA). With the use of a wheelchair I was able to enjoy a terrific Van Gogh exhibition on his olive grove series. I love museums and this was such a wonderful treat for Jennifer and I. We hope to be back at the DMA on future trips.

Another wonderful part of this trip included visiting with Jennifer’s nieces and nephews at her brother’s house where we stay during our visits in Dallas. John and his wife Anna have been terrific hosts for us during our stays with them—a reminder of how important it is to have family around you during these challenging times.

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Reader Interactions

Comments

  1. Joy Sabol

    December 13, 2021 at 10:51 am

    Glad you are being faithful to the ALS study and all the “homework” you have. Our prayers continue for you and Jen. Hope you have a Merry Christmas and are surrounded with those you love and know that your many friends love you and are pulling for you, especially me! 😘

    Reply
  2. Ray Cruz

    December 13, 2021 at 10:52 am

    Pa’lante siempre Hermano. Team Jose is alive and well.

    Reply
  3. Vika FittsMilgrim

    December 13, 2021 at 10:53 am

    Wow!! You 2 are an amazing package deal! So INSPIRED with all you’re going through and what you have to do to stay on top of this. If there’s anything from Maui I can do, please let me know. A dear friend of mine Valerie who’s been a lifelong nurse and case manager from New Mexico, just moved to Honolulu. If there’s something she could do I could check in with her as well. She would love knowing both of you as you’re both very special people! Vika

    Reply
  4. Jean McIntosh

    December 13, 2021 at 4:57 pm

    Jose & Jennifer. Such good news that you are getting excellent medical care. Thank you
    for sharing your inspiring story. May you blessed with healing to ease your journey this holiday
    season. All Best Holiday Wishes, Jean McIntosh

    Reply
  5. Bill Kawashima

    December 13, 2021 at 4:58 pm

    Keep your chin(s) up. And nice to hear that you don’t have to go back for eight eeeks.

    Reply
  6. Colette Ferris

    December 14, 2021 at 10:40 am

    Thank you for sharing your experience.I have never met you in person but would recognize your voice anywhere from HPR. My grandmother had ALS. Thank you participating in the trials. Wishing you and your family many blessings

    Reply
  7. Barb Mayer

    December 14, 2021 at 7:02 pm

    I’m sending you best wishes from Wisconsin, where I’m helping my 15-month-old granddaughter (and her parents) relocate from Alaska. Quite a journey!
    …and I’m thinking of you folks making quite a journey on behalf of battling ALS, and improving your health. Travel onward!

    Reply

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