Donna’s Story

Site created on February 11, 2024

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Last November after recurrence of a stroke, Donna was diagnosed with a rare neuro-vascular condition called Moyamoya. The name means “puff of smoke” in Japanese and was first identified over 50 years ago.  Inadequacy of the central cerebral artery causes small arterials to grow in a pattern which looks cloud-like on a scan. Left unaddressed, this condition could lead to further debilitating strokes. But thankfully, there is a well-established surgical intervention available.

After research and counsel, we were led to Dr. Gary Steinberg of Stanford Medicine who has specialized in direct re-vascularization bypass surgery for Moyamoya. After a virtual visit and review of her scans, Dr. Steinberg recommended such surgery for Donna and made himself available as her surgeon. After a month of planning, we arrived in Palo Alto, California on February 2nd to prepare for advance surgical testing.  Her surgery was originally scheduled for Tuesday Feb 13 with a hospital stay to follow.  But due to her lab results, her surgery was delayed until Feb. 20. Read of Donna’s journey in the posts below.

Newest Update

Journal entry by Douglas Allen

Another weekend has come which seems to be our new rhythm to post some updates on progress. 
          This is being posted by Doug so it will likely not be quite so short and sweet!  
😊   

Donna continues to experience the challenges from her cerebral bypass surgery. As we have noted before, Transient Neurological Events (even beyond the initial complications) were to be expected during the first 6 months to a year of recovery. We have already seen some of these come and go including some periodic weaknesses, some passing episodes of arm/hand numbness and what we call visual hallucinations.

Most recently, she experienced some increasing strange feelings that there was something in the right side of her mouth when there was nothing. (Left brain=Right-side symptom.) Starting as occasional, this became quite continual and was not only bothersome but had some negative impact on the fluency of her speech. Just over the last day or two this has begun to ease, and we are very glad about this.

Meanwhile, her medical and therapy appointments have continued to encourage her progress. Last week, she had an echocardiogram (ultrasound) of the heart at the cardiologist’s office. This was to follow-up on some heart insufficiency that happened while she was in the ICU. They wanted to rule out underlying heart issues. The nurse practitioner entered the treatment room with a big smile. There was no evidence of remaining heart failure. The issues in the ICU were the temporary result of the stresses of recovery. Yeah!

Donna was released from Physical Therapy last week and is regaining mobility and strength.  Just yesterday, she was released from Occupational Therapy and will continue to work on the visual focus aspects of that specialty.  Her Speech Therapy continues as she works not only on the neurological formation of words but also the brain/mouth mechanical formation of words. The move of that therapy from home to a clinical setting is probably coming in the next week or two.

I, Doug, continue to heal and deal with the new structure of my “plumbing.” I am assured that everything I have been experiencing is quite normal and progress will be made with time. Upon recommendation from friends, I requested and have been granted a referral for a specialty form of therapy targeting the “pelvic floor.”  I will have my intake appointment for this in about 12 days.  Meanwhile, I hope to get back to work at Fairport Baptist Homes next Thursday. Just can’t push wheelchairs or do any heavy lifting!

Meanwhile this weekend, Donna and I will be enjoying therapy of a different sort – Relational Therapy. We knew well in advance that this is the 50th Anniversary Reunion of my Graduation from Philadelphia College of Bible (now Cairn University.) In fact – we were part of the original planning meeting last year. Given our health care journey, we were very unsure if we would be able to participate. But having now been cleared by our doctors – we will be basking in the healing love of some lifelong friends. We are limiting our involvement to the most essential times and avoiding the most strenuous. (No Pickleball!)

We are so very grateful to God that we can share in this weekend of therapeutic relationships!     

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