One Year Symptom Anniversary

Kim and I celebrated our 27th wedding anniversary last week.

It was a year ago today that I first noticed speech difficulties a week after getting my annual flu shot at work.  A lot has changed in that year!

My six month ALS diagnosis anniversary is next week. 

I have experienced a continued general degradation in my speech and swallowing during the year.  It is very difficult for me to talk and be understood by anyone these days.  I am experiencing fairly severe muscle spasms all over my body.  I don't sleep very well at night because I have trouble finding a position where I can breathe comfortably with my sinus allergies/ALS symptoms.  Some days I feel like my hands and legs are weaker, other days I feel normal.

I met with the Department of Labor and Industry (L&I) Office of Vocational Rehabilitation (OVR) this week to talk about getting a communications board tablet computer and software that has pics/text to speech capabilities to help me with my verbal communications.  Also sent an email to Baker HR to request an accommodation to help pay for the device and software.

I started doing morning Tai Chi/Qigong exercises before work to provide stretching, strengthening, energy, and improved breathing.  I still do some walking on the treadmill, but not as intense or as long as I used to.  I ordered a PowerLung device this week to strengthen my lungs and diaphragm and started doing breath stacking exercises to help also.  My Forced Vital Capacity (FVC, measure of lung/breathing health) went down some in my second ALS clinic in September, so I want to do some exercises to keep it from worsening, and hopefully see an improvement at my third clinic in December.

I've been taking Chinese Herbs and doing intense acupuncture therapy for ALS for 6 weeks.  I have been on the Deanna Protocol of nutritional supplements for ALS for 2 weeks.  The Deanna Protocol suggests ingesting 12 Tbsps of coconut oil every day, but I have had difficulty ingesting 2 Tbsps.  I ordered a case of Fuel for Thought (F2T), which provides the equivalent of 15 Tbsps of coconut oil daily in a 2-serving 2.5 oz bottle and I am on day 4.  Can't drink it straight, but I am getting it down.  F2T is currently being researched for Alzheimer's treatment and has shown benefits for most neurological conditions by providing energy for healthy brain and nerve function.

I hope to see some significant DP benefits by week 4!

Jean, Kelly and Liam are visiting us this weekend and we are going to see Cirque du Soleil Varekai at the Giant Center this afternoon.  Should be fun!

NO WHITE FLAGS!