Hello friends and family of Stuart- I am helping Stuart connect with all of you, using Caring Bridge to keep you updated on his health and well being. Please send your words of support, hope and encouragement through this website, and check back often for updates! Please scroll down to post a message.
Thank you, Emi Hanawa
Really great news! 2 weeks ago I was FINALLY approved for the IVIG treatment which will hopefully help with my ataxia and neuropathy. (I've been advocating to get this treatment for 5 years without success). I start my first treatments this week for all-day infusions- I should know by the end of the next two weeks if the treatment is working. I'm quite excited and grateful for this opportunity, and I'm very optimistic.
At this time I have closed my practice and am officially retired-- I'm looking forward to exploring all those things I never had time for (like Netflix! seriously!)...Now that I think about it I think I also need a nice new BIG Tv...
I have not been feeling very well because this disease has progressed so rapidly recently, and I have felt so tired and weak- all the more reason that I am so excited for my upcoming IVIG treatment :)
1/25/2018 Update — Discharged from the hospital and back at home. (journal entry from Stuart)
I returned home the day before yesterday following surgery for nocturia related to my metastatic prostate cancer. I started developing skills for dealing with my current medical challenge (See My Story) when I was 33, in 1989.
At that time my father and I were both diagnosed with peripheral neuropathy. His disease progressed rapidly (within months of symptom onset), resulting in significant disability and inability to continue his work as a physician. My disease progressed much more slowly - over a period of years rather than months. Dad lived a meaningful life for approximately 10 years following diagnosis, although his body betrayed him with increasing, unremitting pain, loss of neurological function, and increasing disability.
Following my diagnosis, I continued to enjoy my work as a social worker in public education as well as a therapist in private practice. In addition to a fulfilling personal life with friends, family, and special relationships, I was also able to sing occasionally.
Then, in 2010, as I rose and stood to sing the Catholic Funeral Mass for a close friend, I realized I could not keep my body still. I was swaying. Internally it felt like I was trying to walk on the deck of a large ship in heavy seas. I looked over to my accompanist for help. She quickly found a stool and discreetly brought it to me. Once seated, my internal disequilibrium quieted allowing me to proceed with the service, including the elegiac majesty of the In Paradisum. (It should be noted that I use the term “accompanist” lightly. The Priest was stranded at the coast with the only keys to unlock the keyboards to the organ and piano.) The music was performed a cappella.
The following week began several weeks of intensive and varied diagnostic procedures including four MRI’s (the longest lasted just under 3 hours). These MRI scans were challenging because my neurologist used a closed bore machine which yields high quality images. But, at 6’ 8” inches and 310 lbs., I had to roll my shoulders forward, fold my arms on top my body, and get used to my nose and forehead pressing against the machine’s interior surface as the tray slowly, inexorably slid me back, head first, almost seven feet to the back, closed end of the scanner. I was able to do this without medication, in part, by hypnotizing myself (as I had done for many clients over the years who were facing a similar situation.)
These tests resulted in my being diagnosed with antiGAD-65 Cerebellar Ataxia, a rare, progressive, autoimmune neurological disorder causing a presentation similar to Alice’s shown here:
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Stuart's surgery went well and he is resting and recovering at home. Some of you have asked about bringing him food-- he is not yet able to eat regular food, but Stuart would love to accept your culinary talents. He would like me to be the point person and deliver to him, so if you would like to send Stuart food, please contact me. Freezable or non-perishable is best. email@example.com
UPDATE from Stuart 1/21/18
"My story begins now with this brief description of the current situation .......... please return to ‘My Story’ and the ‘Journal’ page for ........ the rest of the story. I will be admitted to OHSU University Hospital for prostate surgery (a TURP, aka “roto rooter”) to help me get a better night’s sleep without having to get up so often. In addition to prostate cancer I have cerebellar ataxia which causes balance problems. Urinary incontinence can be disruptive to sleep. After a 15th visit to the bathroom in a night, I have often wondered if I should just sleep in there. But standing for any length of time is difficult for me and trying to sleep while standing would not be wise. Tiiiiiimmmmmmberrrr! So … I am hopeful surgery will help this condition allowing a better night’s sleep when I return home."
Updates will be added here (My Story) or on “Journal” page.