Hello all. My name is Cindy. I’m one of Tami's best friends; her soul sister, travel partner, and partner in crime! I met Tami about 35 years ago. Right from the start we had an undeniable connection. We share many interests- our zest for adventure, exploring, trying new things, and living life to the fullest! Before we hike a mountain or sketchy trail, we look at each other, and say “Today is not a good day to die!”, half joking. One of Tami’s favorite quotes by Oscar Wilde is “To live is the rarest thing in the world. Most people just exist.” When Tami and I have hiked mountain trails, while pausing to take a breath and take in the beauty of our surroundings, she has often said, “If I can’t do this anymore, then I don’t want to exist.” Not only is Tami a light in my life, but she is a light to so many others- family, friends, coworkers, clients, and random people she meets each day. She is a GOOD HUMAN. It is with great hope that Tami can live, and not merely exist with ALS.

With a heavy heart, I share Tami’s ALS experience with you.

Her symptoms started in 2023, but it took nine months of doctors visits, tests and procedures before she was officially diagnosed with ALS, which is not uncommon. There are no tests for ALS, so all other neuro-motor diseases need to first be ruled out. Tami has what’s called “bulbar onset” ALS, which is the fastest progressing form because it begins in the motor neurons which control speaking, swallowing and breathing. Other forms of ALS begin in the neurons that control limbs, and eventually progresses to the bulbar motor neurons which is where all ALS stories end.

In July 2023, Tami went to her primary care doctor with complaints mainly involving her tongue and having a hard time clearing her throat. She was initially turned away, being told it was anxiety! Knowing something was not right, Tami persisted. First with an allergist who found evidence of vocal cord “spasming” and referred her to neurology in pursuit of treatments for Spasmodic Dysphonia. Neurological visits lead to testing for nerve disorders, including several EMG’s (nerve conduction tests) which were all initially normal.

In February of 2024 Tami had her appointment with the neurologist who specializes in Dysphonia. After a puzzling exam, and obvious discontentment as he paced the hallway outside of the exam room, the neurologist returned to test the strength in Tami’s tongue a second time before sharing his opinion. He told her that it was NOT dysphonia but he suspected ALS. It was this appointment that turned Tami’s world upside down! Terror and uncertainty overwhelmed her for nearly 6 months more of provider visits, procedures, and uncomfortable tests (including a spinal tap!) in an attempt to rule out all other possible diseases. Not to mention the anguished journey of facing her mortality, and the lament knowing she will miss out on much of her granddaughter’s life. The thought of leaving her daughter and granddaughter guts her on the daily, in addition to what she knows her inevitable end will do to her parents, friends, and family. Late spring last year, Tami sought mental health support and was referred for Ketamine infusions for her understandable anxiety & depression. The treatments made a world of difference and really helped her move to a place of acceptance. Unfortunately, those treatments were not covered by her insurance!

After a change in her work health insurance, Tami switched her care from HonorHealth (with Neurologist Dr. Levine) to Mayo in Phoenix where she was first given the “Bulbar Onset ALS” diagnosis in July 2024. She spent a full week in August attending Mayo’s Multidisciplinary Clinic establishing Speech, OT, PT, Pulmonary, & GI baselines. A feeding tube was recommended due to her having lost weight because chewing had become so difficult. Tami spent an unexpected week in the hospital late August/early September following the feeding tube placement surgery. What was supposed to be an outpatient procedure with overnight monitoring of her breathing (because of her ALS) turned into a week-long nightmare. After 48 hours of extreme pain, a CT finally revealed the feeding tube was not inserted correctly. Stomach acids leaked into her peritoneum and she developed sepsis. She required a second emergency surgery to repair the damage. She then developed pneumonia because of the extended intubation period (with having 2 surgeries and some post anesthetic breathing difficulties both times, as anticipated with ALS)!

Tami has since recovered and now relies on her feeding tube for almost all of her nutrition as swallowing has also become more and more difficult, putting her at risk of aspiration. She is well connected with ALS-AZ, where she continues to be supported with care coordination, connections to speech modification devices, and preparing her home for later stage care. ALS-AZ had recommended Dr. Lahda and Barrow Neurological Institute in Phoenix, where many clinical trials take place. So Tami has also had a second (or third) opinion at Barrow in recent months and they will continue to follow her care with clinic visits every 90 days.

Tami has started on 2 of the most promising medications for ALS, which can slow progression by 30% in some cases. Although they have classified Tami’s Bulbar onset ALS as ‘slowly progressing’, it IS still progressing. There is no cure. A diagnosis is a death sentence.

ALS has most affected her speech, and it’s become increasingly more difficult for her to talk. Having a career in sales means her days at work are now numbered too. Her desire is to be done working soon so that she can live what life she has left to the fullest. Her neurologists also recommend she reduce her work stress and obligations. However, doing so is not without huge financial impact. Her disability pay is 40% less than her normal pay and her work health insurance is time limited during medical leave and unaffordable after paid medical leave ends. She qualifies for social security disability and medicare, however the reduction of income is even less once on federal assistance. Disability/Social Security will not be enough to cover all she is facing, exuberant healthcare costs, mortgage, bills, and out of pocket expenses. All funds raised will be used to offset Tami’s living expenses once her salary ends, cover any unforeseen home modifications, and hopefully allow her some flexibility to travel while still ambulatory. Tami deserves the opportunity to LIVE and ENJOY the time she has left without financial stress.

Please help us in our effort to support Tami in her journey with ALS by contributing whatever is within your means and heart.

~With Love & Much Gratitude