About Amy Adams Gowan
My name is Amy Adams Gowan, 43 year old mother and wife, from Nashville, TN. I am married to my best friend Robert Gowan. I have two awesome children, Catherine, 5, and Will, 2. I am an attorney in the Green Hills area of Nashville.
From May 2009 – August 2009, I began having some unexplained falls . It felt like my knees were buckling and my quad muscles were weak. As I’ve generally been an athletic sort all my life, I started working out with an awesome personal trainer, Brian Sandlin, at the Maryland Farms YMCA to strengthen my quads and “lose the last 8 lbs of baby weight in my gut”. I continued to have muscle weakness and developed muscle twitches. After my PCP, Dr. Jim Lancaster, checked my blood and it came back normal, I went to a neurologist.
My fear was MS. On October 15, I did a “field-sobriety” test with the neurologist of touching my nose, standing on one foot, walking on tippy toes, etc. He immediately said I had early ALS, this would be “our secret” and I shouldn’t tell anyone including my husband until he could do an EMG in 11 days, and left me sitting there in shock. I really am mostly intelligent but did not know much about ALS other than it was Lou Gehrig’s disease and eventually you couldn’t breathe. Like an idiot I checked the internet upon my return to the office and had the breath sucked out of me when I saw the life expectancy was 3 – 5 years! I was speechless, hysterical, and immediately began doing the math of the age of my children.
I called my friend and doctor, Dr. Terry Adkins, unable to speak. He was shocked too. He advised me to absolutely tell Robert and anyone else to help me get through the next 11 days. Within an hour, he called and emailed me back with a plan. I should get a 2nd and perhaps 3rd opinion, probably at Mayo Clinic and an academic facility that had an MDA-ALS clinic as they do most of the ALS research and receive the most funding. Vanderbilt University Medical Center is one of 20 MDS-ALS facilities in the US. A blessing for treatment, but not where I wanted to go for a 2nd opinion. Being a litigation attorney, I’m skeptical of most everyone and felt it would be better to get out of town.
Of course I told Robert that day and he was great. On his way to Chattanooga, he turned around and came home. We were both devastated but didn’t really believe it. Scared to tell Geneva, my mother, as I knew I would “lose it”, I finally did. In true strong woman/Geneva R. Adams fashion, she remarked “I don’t believe that”. On October 26, I went back to see the neurologist. He completed the EMG and said “as I thought, you have ALS. You probably want to get a 2nd opinion. You could go to Vanderbilt or I knew a guy at Mayo in Jacksonville but he’s left, not sure where he went, that you might want to see.” Through tears, I was somewhat in cross-examination mode when I asked him “Do you mean I’m going to die in 5 years? I have a 2 yr old and 5 yr old.” He was “nice enough” to share with me that his mother died when he was 15 yrs old and that my kids would be ok. Needless to say that was very “comforting” to me. When I asked for an MRI as most ALS diagnosis’ are made after the results of an MRI, he said he would but he didn’t think it would show anything.
Five days later, he called to advise me that as he suspected my MRI was normal, there was no treatment and what were my plans. He gave me little or no direction other than I could try and get in clinical trials and to get a 2nd opinion but no information on how and where. He may be a great neurologist, but his explanation, demeanor and bed-side manner were horrible.
As soon as “my angel”/cousin/sister, Cathy Simpson Aslin found out, she also went to work. She is a BSN and the school nurse at Woodland Presbyterian School in Memphis, TN. One of her parents, a neurologist at St. Jude, trained at the Mayo Clinic in Rochester, MN. After registering on their website, I received a call within 24 hours. An appointment was booked for December 8, within three weeks, with Dr. Michelle Mauermann. On December 7, 2009, Robert, Cathy and I flew to Rochester, MN. It so happened there was a blizzard and temps got down to -12 degrees!! Luckily for the Southerners, Rochester’s downtown is completely underground. We prided ourselves in never going “topside”!
Mayo Clinic was incredible!! It is the way health-care should be – on time, professional, efficient, and compassionate. Dr. Mauermann was a young doctor who also has a 2 yr old. After a two hour examination, she also felt like I had ALS. At this point, we all began to accept my diagnosis. I don’t think I’ve cried so much in my entire life. Grief is an understatement to describe how I felt. All the same, Dr. Mauermann had another EMG run, blood work taken, oximeter readings to verify her diagnosis. All came back with results indicating ALS. The next day I met with a physiatrist (doctor specializing in physical therapy), physical therapist, ALS nurse, and social worker. Although a devastating diagnosis, they were all so kind and upbeat. They advised I could return in March or get a referral to the ALS clinic at VUMC. Naturally, I chose VUMC as it was more convenient.
In an effort to get home a day early to see our kids (as my days may be limited), we tried to move up our flight on American Airlines. Initially I had called American Airlines to see if there were open-ended tickets for Mayo patients. They advised there was a 5% discount and it was cheaper to book online. Therefore, I booked as they advised. I later learned that if you make reservations directly through Mayo Travel, you can get a somewhat “open-ended” ticket with a $70 change fee. Much cheaper than the $400/ticket change fee they wanted to charge us. Eventually we ended up buying one-way tickets for $350/ticket as they were cheaper. DON’T FLY AMERICAN AIRLINES!!! They also lost our luggage during the blizzard for 24 hours after we paid $60 to check them. The flight was 2 hours late too.
VUMC has been top-notch. Dr. Peter D’Onofrio is professional yet has a dry wit. He advised I had very early onset ALS, other than my legs and ankles was very strong, and with my attitude (smart-aleck no doubt), had a chance of exceeding the life expectancy for up to 7-10 years. That may sound depressing to some, but this was the first positive news I have heard throughout this process. I told him I was terrified of losing my voice to which he replied after 20 minutes with me “I can see that in you”. He told me for the time being my mouth was fine!
I began physical therapy with Lisa Haack at the Pi Beta Phi Rehab Center in late January. Although very different from strength training, it’s so good to be doing something physical. My legs are weak and I have difficulty on stairs, but overall I’m in good shape. As muscles eventually atrophy, I’m not allowed to burn/strengthen muscle. I have to keep my heart rate within 20 bpm of my resting heart rate. This is probably one of the most challenging things for me to deal with as I have always been in decent shape. More than once she had to tell me to “slow down” on the stationary bike. Even so, it felt good to stretch out and do some cardio, physically and mentally.
My plan is to keep doing physical therapy to maintain the strength I have. I’m not in denial that my muscles will probably atrophy but I plan on fighting as long as I can. Also, I’m on a waiting list to get into some clinical trials. We have several fun trips planned including a Disney Cruise for Spring Break and a family trip to Montana in June. I have reconnected with so many friends which has been awesome. Not exactly the way I wanted to get back together, but I’ll take it! I just don’t feel terminally ill and I plan on living while I’m here vs. dying. It is sometimes hard to keep a positive outlook, but I have so much family/friend support. The most difficult obstacles for me as an active, busy-body, control-freak is to slow down, let go and live in the present. I will work until I can’t, it helps me from obsessing all the time.
As of January 30, 2010, this is where I am in life. I feel like I’m running a marathon, mostly in a good way. This is my first blog so please forgive my ignorance. I will try to update it and add more information in the future.