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Tuesday, December 18 , 2018, 12:00 pm | Partly Cloudy 62º


Meredith Scott: Living My New Life on My Terms

[Noozhawk's note: Just over a year ago, dedicated community volunteer Meredith Scott, 62, of Santa Barbara, began a medical journey that, ultimately, led to an April diagnosis of Amyotrophic lateral sclerosis, often known as Lou Gehrig’s disease. She recently shared her very personal journey with her friend, Randy Weiss, a longtime Noozhawk contributor. Click here for Randy's article.]

My husband, John, and I had traveled east last September. It was a vacation we had long dreamed about — to see the foliage from New York to Quebec City in Canada.

We’ve been married nearly 39 years.

At the tail end of our trip, we were in New York City.

While walking down the street, I felt a weakness in my left arm. It was so slight that I thought it might be my imagination. After we returned to Santa Barbara, I could still feel it.

My chiropractor, Dr. Dale Migliaccio performed some tests and determined it wasn’t my imagination and that there was, definitely, a weakness detected.

And after working with him for about two weeks, he referred me to a neurologist, Dr. Tom Jones, who performed an MRI. On the Wednesday before Thanksgiving last year, he shared the results: the MRI indicated I had had a stroke.

I didn’t know what to think at the time ... And I didn’t tell anyone besides John and our son, Jordan. It was Thanksgiving and I didn’t want "to freak everybody out." We were having 25 people at our house for dinner the very next day.

After Thanksgiving, I was just kind of "out there"’ and going to IM=X Pilates, trying to keep a focus and keep my strength going. After one of the classes, I happened to notice someone talking to the instructor nearby. She was saying she was a neurologist and starting her own practice that centered on women.

Well, I was eavesdropping and got busted!

Dr. Julia Bryson told me she was opening her clinic in January. I briefly shared my medical news and she encouraged me to make an appointment to come see her. This was just before Christmas and I got an appointment to see her this past Jan. 11 at her new office.

After her initial examination, she looked at me and said, “You have some atrophy in your left hand” and she made arrangements for me to go to Cottage Rehabilitation Hospital.

In February, I started doing rehab there with my occupational therapist, Jennifer Deaderick, who has been my angel! She didn’t like the way my left hand was looking and referred me to Dr. Karen DaSilva at Sansum Clinic. DaSilva conducted some nerve tests over two sessions and had two more MRIs scheduled.

On April 29, just seven months ago, John took me to her office for my appointment. We sat down in her office and she told me I had ALS. It was devastating ...

She cried as she talked ... and I went into a state of shock.

Depression set in for about two months and I actually don’t remember too much about that time. But, sometime in midsummer, I started exercising again in my living room. It was then that I had a revelation of going out in public. I had been afraid of people looking sad when they saw me.

Then, I had an idea — to have a party!

Since my diagnosis, my friends have just been wonderful — sending cards in the mail every day, plus many emails with love, encouragement and support.

So we made arrangements to invite 160 people to our house — it was to be a Celebration of Friendship.

Shortly before then, I started going to Cedars-Sinai Medical Center in Los Angeles for treatment. Doctors had just changed my medication and said that some time was needed to adjust.

So, no party just yet ...

But my wonderful husband had arranged a surprise trip to Hawaii for our family, plus my daughter Kelly’s boyfriend, Brian, and Jordan’s girlfriend, Aubrey. Brian and Aubrey had never been. We stayed at Turtle Bay on Oahu's North Shore and had the most wonderful time!

Some of the best parts of the trip were having Brian and Aubrey with us since they were so excited to see everything for the first time.

When we returned home, we rescheduled the party for Oct. 3 — not quite a couple of months ago. It was important for me to have this event be on my terms.

And it was a beautiful, heartfelt affair with much love and many tears. I think it also relieved a lot of the fears my friends may have had about seeing me and not knowing what to say.

Now I’m fine with going out in public, even though I don’t drive anymore and I need assistance with getting around. And for exercise these days, there’s water therapy in our pool.

Now I have a new passion — besides concentrating on my health — and that’s raising money for ALS research. We’ve started a nonprofit organization called Beating the Odds.

My friends have helped set it up. Like Marty Silverman, a local attorney, who helped when we established the Hope School District Education Foundation. Robin Smith is helping with our taxes.

At my Celebration of Friendship party, Sarah de Tagyos, who used to run the AT&T Foundation, offered her assistance.

Wendy Read, an attorney who started the Children’s Project Academy, jumped in, too. She had great experience in starting a nonprofit; she knew everything we needed to do.

Then the day after the party, I had three of these amazing women at my house discussing how to do this.

We had to get creative in getting our 501(c)(3) status since the State of California is backlogged to April. In the interim, we're working in partnership with the nonprofit Cedars-Sinai Medical Center.

All the money raised will assist Dr. Robert Baloh, my doctor at Cedars, with his important ALS research.

Our first fundraiser is Jan. 21 at The Harbor Restaurant on Stearns Wharf. I have some connections there. ☺ It will be a wine tasting, buffet dinner and silent auction beginning at 6 p.m.

We'll also be hosting a golf tournament in the spring and we're excited that Jordan’s good friend, Nick Watney, a pro golfer on the PGA Tour, will be joining us. And we’ll be having a screening of an inspirational ALS movie called, Running for Jim, at one of the local theaters.

Perhaps one of the hardest things ...

Nearly all of my volunteer and fundraising efforts in the past have focused on kids, so this represents a new twist for me because it is so personal. But I want to help further the research in finding a cure for ALS, and hope that it will be able to help other families.

And, perhaps, me and my own ...

                                                                  •        •        •

For more information, tickets and contributions for Beating The Odds, please email Meredith Scott at [email protected].

Click here for a related article.

— Meredith Scott is a Santa Barbara philanthropist and community leader.

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