Bethanne’s Story

Site created on January 25, 2010

She has plenty of courage, a strong faith, and a native expectancy of good. Living with her is a high adventure. (Wm McGreal about his wife)


Welcome to our CaringBridge website. We've created it to keep friends and family updated about Bethanne. Please pray for her complete healing but barring that that God would be glorified through this time. Bethanne had been suffering from advanced neurological lyme disease and renal cancer. Yet on May 28, 2010 was diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's disease.  Get started by reading the introduction to our website, My Story.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.



In November 2008 Bethanne started to have difficulty writing her name. About a month later the kids noticed that she had started to walk funny. At the gym she had increasing difficulty maintaining her balance in her kickboxing class.

She visited several doctors over the next 5 months who diagnosed her with stress, then possible thyroid issues, or possibly other hormonal issues. In April 2009 she was diagnosed with early onset Parkinson's disease which provided some relief that there was a diagnosis that was not terminal and allowed for a normal life expectancy.

However, she never developed the tremor associated with PD and subsequently after more (painful) tests in June 2009 she was given a new diagnosis of atypical and early Amyotropic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease. This illness is terminal and Bethanne and David were told she likely had roughly 5-10 years to live. She was to expect increasing debilitation as her motor neurons just died leaving her with muscles that no longer would work.

In late June 2009 Bethanne began to experience severe pain in her upper arms and torso. Her chest felt tightness akin, she said, to a corset being tightened too tightly.  Her doctors said there was no pain with ALS so in their mind this pain was more emotional than actual. However they did prescribe strong painkillers which hardly touched the pain and led to many sleepless nights and delirium. Ironically we discovered that Extra Strength Excedrin was the only med that gave significant pain resolution.

On July 2nd, 2009 Bethanne was admitted to the Hospital of the University of Pennsylvania and given morphine to ease her pain. She was kept overnight and was subjected to numerous blood and cerebro-spinal fluid tests. These tests were the first clue of a spinal fluid infection that might be cancer, or bacterial, or an auto immune disorder.  We weren't sure if this meant Bethanne had ALS plus something else or if this was the sole condition.  When the doctor who had diagnosed her with ALS visited her to tell her of all these options he mentioned with something of a laugh that Bethanne didn't have ALS but an unknown something else. Though Bethanne was still in extreme pain we "high fived" that ALS was removed from the table.

Fast forward two weeks and the pain was still intense and Bethanne who had been home at her request was being readmitted to Pennsylvania Hospital,  the oldest hospital in the US.  As she was being admitted one of the residents mentioned, Mrs. Moles, you do know that you have Lyme Meningitis. Her spinal fluid tests had just come back positive for Lyme Disease in her brain and spinal cord. The Lyme bacteria had been gnawing on her nerve coating causing them to short circuit producing muscle pain, weakness and twitches.

We were told that 30 days of IV antibiotics would cure her and that that could be administered at home. We felt that we were on the home stretch to healing. Almost as a footnote one of the scans that had been done revealed probable kidney cancer. We consider this one of God's hidden blessings as this would have been fatal if not detected so early. Dr. Mulloy removed this kidney on September 8, 2009.

We expected that 8 weeks after the kidney removal surgery Bethanne would regain strength and start to heal. However it was very clear that she wasn't getting stronger and the physical rehab she had been doing was not helping her get stronger. Our primary care doctor ordered a Western Blot blood test on November 11, 2009. It came back 10 days later indicating that Bethanne still had an active Lyme bacterial infection. This was dismaying as we had been told that her previous IV treatment had killed all of the Lyme bacteria. Nevertheless the blood test confirmed that Bethanne's health decline was due to an ongoing infection that her previous treatment had not eradicated.

Over the Christmas holidays we decided to pursue treatment with a new doctor who would more aggressively treat Bethanne with a course of antibiotics.  Read the journal for the "rest of the story."

Newest Update

Bethanne lives, thrives and survives with some life updates and news.

Journal entry by David Moles —

Dear friends, 

Bethanne is well and we're both a year older than since last I posted. Bethanne is 3 weeks shy of 66 and I'm (David) 68 now.

In terms of good and bad news we'll start with the "bad". The bad news is that Bethanne still has ALS and can only communicate via "yes" and "no" responses and essentially her eye muscle ability runs out early in the day. We now rely more on her heart rate, blood pressure, O2 levels, and temperature to let us know how she is doing.  (They are typically excellent and better than mine.) Her PIP (peak inspiratory pressure) vent readings are another key indicator as the higher that number the more congested are Bethanne's lungs which means the vent has had to increase the pressure to get her the oxygen she needs.  The pressure number of 20 is the ideal goal and gives all of us peace when she is near that. Anything over 25 requires significant efforts to lower the pressure. Through a combo of saline nebulizers or possible albuterol neb and cough assist machine (essentially a strong vacuum for her lungs) we can get her pressure down usually to 20 once again. And then peace & joy radiate throughout the room.

Recently one of "our" nurses (Gail H.)with the Philadelphia ALS society who has been involved with Bethanne's case for the 15 years (since Dec. '08) told David in a video call that "Bethanne will probably outlive us all!".  The context of her comment was to bluntly tell me that I needed to create a successor plan if something happened to me. But the point was still valid that Bethanne's body is still petite and healthy and her hair is still the chestnut brown color of her youth. With her ventilator, feeding tube and great home nursing care Bethanne's life can be and has been extended significantly beyond the original 5 to 10 years she was told she had to live in 2009. For this reason I've been putting together a "D-Day" plan in the event I get to go to heaven before Bethanne. (D-Day = Dad's Day plan)

So now some good news and that is we have another little grandson. Our daughter Emily and son-in-law Steve, along with their older son, Connor, have blessed us with another grandson, Jason DAVID! Both boys came to visit us earlier this month and brought their parents along. (FYI-We respect Emily and Steve's desire to not have pics of their boys out there so you'll just have to imagine the cutest two little boys ever. Connor is blond and fair and Jason looks as if he'll be tall, dark and handsome.)

So this is great news that Bethanne can and did meet these boys and did get to "hold" Jason David briefly. She does cry a bit at these times which I'm pretty sure are mixed tears of joy that she has lived to see grandkids and some tears of sadness that all the things that she would like to do as their "Milly" (her grandmother name) are not possible for her to do. Connor at age 2 loves anything that moves or makes noise. Trucks, hot wheel cars, trains, and especially fire engines are a high priority. He may have cornered the market on t-shirts with some sort of fire engine theme.

Connor also loves (and slightly fears) going through the car wash. David's car has a moon roof so he took Connor through our nearest high tech car wash with different colored lights for each different application of soap, wax, sealer, and final rinse water. He was awash in excitement and trepidation during the 3 minute process. 
Then we went next door to that fine Scottish restaurant, MacDonalds, for ice cream. He made reference to "Bompa's" (Connor's re-imaging of David's grandfather name, Grampa) car wash for days afterward. I think he thinks I own the MacDonalds too.

Jason David,  just two months old, started to smile consistently while visiting us here in PA.  Apparently his name is still subject to revision as he was called "Jace", "J-bird", J.J., and my fave J.D. while he was here. Connor calls him "Jace" so that one may stick according to the rule of order governing older brother and younger brother relationships!

Some other good news is that our daughter Caroline and fiance Josh will be getting married this coming March 2024. They like the idea of getting married so much that they're going to do it twice!! They'll have the official wedding in Pennsylvania in March so that Bethanne can attend. That event is for immediate family only. Then in August 2024 they'll have  a bigger "wedding celebration" in North Carolina at which many more guests will attend. This would be another of those life events that Bethanne has always had as goals for which to stay alive. She'll be at the PA event but to travel to NC would be too much. Congrats to Caroline and Josh!


Some sad but glad news is that Bethanne's mother, Mary Lou Beddow, passed away 2 months ago in June in Huntsville, AL. She had been living with Bethanne's younger sister, Susan and her husband, also greatly named David, in northern Alabama and would've been 90 this coming October. (The "glad" part was that Mrs. Beddow passed quickly though her last 48 hours were pretty painful.) She was the last of our children's grandparents so one era has now passed. Mrs. Beddow was a strong woman who had many stories to tell from her hardscrabble girlhood in Harlingen, Texas and then to Meridian, MS, before moving to Birmingham and becoming a nurse after high school. She married Bethanne's father, Dr. Charles Peter "Pete" Beddow aka "Big Pete"  either at 20 or 21. She was 23 when Bethanne was born as her 2nd child and 2nd daughter.  Personally, I'm indebted to "Rickie," as her kids and grandkids called her, as Bethanne told me after we were married that her mother after meeting me for the first time told her "don't let this one get away"!  So I am honored to have been a recipient of the Rickie Seal of Approval :) (Note: Bethanne's Daddy passed way too young at age 60 in 1987 just after our first anniversary though he too gave me his "Big Pete" seal of approval when I asked him for Bethanne's hand in marriage in 1985.)

So I'll stop "prattling" on and just thank you on behalf of Bethanne for your kind notes and prayers and updates from your families over the years. I read to Bethanne any comments, texts, or letters that you send.


Read More of the journal titled "Bethanne lives, thrives and survives with some life updates and news."
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