In late January, I said goodbye to my local neurologist, Doctor Vivian Chin, who’s taken care of me since my formal diagnosis in May 2021. Dr. Chin returned to New York to be closer to family. Doctor Chin was a very thoughtful and caring doctor with wonderful bedside manners. She took time to listen, and by the time she said goodbye she became part of my family.
My new neurologist welcomed me at our new patient visit a few weeks ago. Doctor Karen DaSilva has a deep background in treating ALS patients, and was a part of an ALS clinic at UCSF. I was very impressed with her during our first meeting, and look forward to establishing a deeper relationship in future appointments.
Over the past few months I’ve received a few pieces of equipment that will make life easier. The first being a trilogy breathing device, which allows me to use sip ventilation to support my breaths as needed. I use it mostly at the office, where I run out of breath during heavy use of voice-to-text technology which I rely on to type out emails and memos, and during in person meetings with HPR staff. We’ve recently ordered an additional stand for the Trilogy so that I can take it back and forth between the office and home and use it when needed while sitting in my recliner or in bed.
The other device I recently received is an EyeTech eye gaze machine, which will allow me to use my eyes to communicate, surf the internet, control remotes at home, and eventually log into my office computer to conduct work more effectively from home on my work from home days. It will also be my communication device when and if I lose my voice, which has started to get weaker the more I use it.
Healthwise, my progression is mainly impacting my arms and hands. My left arm and hand are completely useless, and my right arm has gotten weaker and my right hand now only has two functional fingers, which makes it difficult to grab items. This means that I now depend 100% on Jennifer, lunch buddies, and other helpers to help feed me my meals.
While my leg muscles remain strong, they have become stiff, which makes it extremely difficult to take the few steps that I can take. This makes transitions from my recliner to my power wheelchair, or my lightweight transfer wheelchair–which we use to get me to the shower, more and more difficult.
In my last post I shared an update about my swallow test conducted in mid-February, which indicated that my swallowing is still strong. My breathing is also still strong, although there has been a slight diminishment in my breathing capacity.
More updates coming soon
We’ve begun working to update our GoFundMe campaign to raise additional funds to help offset the increasing costs for my care. Tomorrow we’ll be learning more about the possibility of having a ceiling lift system installed to ensure safer transfers for me between my power wheelchair, recliner, bed, and bathroom. Our current methods require my ability to stand and take a few steps, or utilizing our hoyer lift which can’t be used for most transfers without a third person to help.
As always, Jennifer and I remain eternally grateful to all of you for your love and support during this journey.
Thanks for the update. You both continue to amaze me. God bless you both.
Sounds like you’re in good hands with Doctor Karen DaSilva; if she came from UCSF that speaks volumes about her credentials. Thank goodness for medical machinery! Glad to know that you are accessing all sort of devices; may they make your days smoother.
You inspire me everyday! I love that you’re sharing this journey with so many. The technology is amazing and your refusal to let this stop you from continuing to live life to the fullest is inspirational! I am so glad you have Jennifer supporting and loving you through this.
Wishing both of you the best. Persevere!
Wishing you all the very best Jose.
Wishing you a very happy Easter
Dom (your old neighbor opposite in Avalon Park)
Rebecca Wood Wyatt
Jose, I think I only met you once, not long after you started at HPR. I have a long history with public radio and volunteered at the HPR station many times while I lived there. We left in late 2013 and return yearly as we kept our house – we’ll be returning to stay in 2027 and I will once again be an active volunteer. For now I keep up with HPR by streaming the news while I’m at the gym! My heart goes out to you and Jennifer, and I’m always happy when I hear you are still at work and keeping our public radio station on the air. Tell Valerie and Gene I said hello! Looking forward to the next update – until then “just keep swimming!” (because Dory knows you should never give up!)
It looks like you have the best care possible. Thank you for sharing your ongoing journey. Much love and support to you and your family.
Jose – thanks for the update. I’m inspired by your determination and focus. Lots of good thoughts and good juju from VA!
Hi Jose! Your journey and story is such an inspiration to me. I look forward to your updates. Miss you and love you! Linh
Jose – your strength and determination inspire me. I appreciate the updates on your journey. . Melodie
Love you ALWAYS Brother