A woman has written an emotional ode to her husband who died after a battle with both Lyme disease and ALS.
Jo Ann Simon, 64, from Bethel, Connecticut, said the first sign that something was wrong with her husband Tom was when he began speaking with a lisp in 2011.
Then his speech began slurring and he had trouble moving his hands. He was diagnosed in June 2012 with Lyme disease and, just a month later, with Lou Gehrig’s disease.
Some lead long lives after receiving the terminal diagnosis, such as former NFL player Steve Gleason who has been living with the disease for seven years, and physicist Stephen Hawking who battled it for 56 years.
For others, it’s a rapid and cruel degeneration. Jo Ann watched Tom become confined to a wheelchair, drink only liquids because he was unable to chew, and lose the ability to speak and have to communicate with a text-to-talk app.
In May 2014, at age 55, he lost his fight to the neurodegenerative disease.
Speaking to Daily Mail Online, Jo Ann shares the agony of watching Tom’s disease rob him of all his motor skills, and how she refused to accept that his diagnosis was a fatal one.
Jo Ann Simon, 64, from Bethel, Connecticut, has opened up about what it was like to watch her husband Tom suffer through his battle with ALS and Lyme disease. Pictured: Jo Ann and Tom
The couple was visiting Block Island off of Rhode Island in July 2011 when Tom was bitten by a tick. Months later, he began speaking with lisp and had trouble moving his hands. He was diagnosed in June 2012 with Lyme disease in July 2012 with ALS. Pictured: Jo Ann and Tom before, left, and after his diagnosis
Jo Ann met Tom at Greenwood’s Grille & Ale House in Bethel, Connecticut in 2004, where he walked over to the table where Jo Ann was sitting with her friend, Debbie to introduce himself.
‘I was newly divorced, I was done with men and I didn’t think he was my type,’ Jo Ann said.
‘Debbie suggested that he join us and I almost kicked her under the table like: “What are you doing?”‘
After chatting, Tom told Jo Ann he would love to take her to dinner sometime, but Jo Ann told him that she didn’t have a card with her number to give him – so Debbie gave him one.
Jo Ann didn’t hear from Tom for three to four weeks until she was having dinner again at Greenwood’s.
Tom was also there, and he told her he had accidentally put the pair of pants containing her card in the washing machine, disintegrating it, with no way to reach her.
‘We became best friends, then fell in love,’ Jo Ann said.
ALS is a neurodegenerative disease in which sufferers eventually lose the ability to walk, talk, dress, write and breathe. In August 2013, Tom’s doctors put him on IVIG, a treatment made from donated blood that contains healthy antibodies to block any harmful ones from doing damage. Pictured: Tom and Jo Ann before the diagnosis
Jo Ann said at first the treatment worked, but them his symptoms worsened. He became wheelchair-bound and his speech became so close to nonexistent that the couple began using a text-to-talk app so they could communicate. Pictured: Jo Ann and Tom before the diagnosis with one of their grandchildren
Jo Ann and Tom were vacationing on Block Island off the coast of Rhode Island in July 2011, having recently gotten married, when he bitten by a tick.
No signs manifested until months later when Jo Ann noticed Tom’s ‘prolific voice’ was fading and he had begun speaking with a lisp.
He went to the doctor in June 2012 and he was diagnosed with Lyme disease.
Lyme disease is a tick-borne illness that generally causes a rash as well as joint-pain and muscle weakness.
Tom was put on antibiotics, but his symptoms didn’t improve. His lisp grew worse, his speech got worse and he had trouble moving fingers.
A month later, his doctor recommended he go see a neurologist. After assessing Tom’s symptoms and running a few tests, he said he believed Tom had amyotrophic lateral sclerosis, better known as ALS.
ALS is neurodegenerative disease, which progressively damages nerve cells in the brain and the spinal cord.
It also goes by the names of motor neuron disease or Lou Gehrig’s disease after the New York Yankees player who was diagnosed in 1939.
Over time, sufferers lose the ability to walk, talk, dress, chew, write and breathe.
The average life expectancy from the time of diagnosis averages between two and five years.
‘I said: “This can’t be true. It’s impossible. We have to figure out what’s wrong and fix it”,’ Jo Ann said.
After multiple treatments showed no improvement, Tom’s doctors put him on Intravenous Immunoglobulin Therapy (IVIG) in August 2013.
IVIG is a treatment made from donated blood that contains healthy antibodies to block any harmful ones from doing damage.
‘At first the IVIG was helping. Before he would be on it he’d be sitting in a wheelchair but, after it, he felt like he could dance,’ Jo Ann said.
But soon enough, his symptoms only grew worse.
Tom’s speech became so close to nonexistent that the couple began using a text-to-talk app to communicate.
The once boisterous chef who ate a lot dropped significantly in weight.
‘His eating changed from whole foods to ground up foods to foods with no lactose to just liquids because he was unable to chew,’ Jo Ann said.
Tom, the big teddy bear who stood at six feet tall and was once a football player, lost 100 pounds by the end of his life – from 251 pounds down to 151.
‘His mind was still there, he was still keen but he had trouble communicating,’ Jo Ann said. ‘He lost hope a lot sooner than I did.’
Tom’s balance started to falter and he would be out of breath walking from the living room to the kitchen. The six-foot-tall chef (left and right) lost 100 pounds by the end of his life – from 251 pounds down to 151
After the IVIG treatment ended, the couple enrolled Tom into stem cell therapy treatment but Jo Ann said it was too late because, by then, his symptoms were far too progressed. Pictured: Jo Ann and Tom (far left and second from left) with friends on the Block Island Ferry
After the IVIG treatment ended in April 2014, the couple enrolled Tom into stem cell therapy treatment but Jo Ann said it was too late because, by then, his symptoms were far too progressed.
That same month, Tom had a night during which he was having severe difficulty breathing but didn’t want to go the hospital. The next day, after seeing no improvement, Jo Ann called an ambulance.
‘When we got to the hospital, I gave them a rundown of his condition,’ Jo Ann said.
In April 2014, Tom had severe difficulty breathing one night so he was rushed to the hospital. Pictured: Tom and Jo Ann
‘They told me that he was having a heart attack so I had to approve him for emergency surgery.’
As it turned out Tom was not suffering from a heart attack but from tachycardia, or rapid heart rate, and did not need the surgery after all.
Throughout his 14-day stay at the hospital, Jo Ann said Tom’s condition was the worst it had ever been.
‘I could tell he was getting worse. We had the stylus for the talk-to-text app but he couldn’t even hold the stylus anymore,’ she said.
‘So we got a letter board and he would point to the letters on the board to talk to me. Halfway through his stay at hospital, he could not do that anymore.’
Knowing Tom was likely nearing the end of his life, Jo Ann arranged for in-home hospice care.
Jo Ann took Tom home on Mother’s Day and he passed five days later at age 55.
‘We were together for 10 years and married for three years. He was the love of my life,’ Jo Ann said.
‘And I was facing grief but I didn’t want to forget anything. I knew as time would go forward, I would forget the little things.’
Jo Ann brought Tom home from the hospital in May. He spent five days in in-home hospice care before he passed away. Pictured: Jo Ann and Tom on Halloween
Dealing with grief but not wanting to forget the memories of their life together, Jo Ann wrote Rose-Colored Glasses: A Memoir of Love, Loss and Hope, which she hopes reminds people to be positive and ‘to make most out of every single day’. Pictured: Jo Ann and Tom
Over Labor Day weekend of that year, Jo Ann was on Block Island ‘where it all started’ and said her memory was rejigged of her and Tom first meeting and falling in love.
‘That’s where I got the inspiration to write the book. I thought that people were probably going through the same or similar things and I thought maybe it could help them,’ she said.
And so Jo Ann penned Rose-Colored Glasses: A Memoir of Love, Loss and Hope, which was released this year.
‘The book discusses my life Before Tom and After Tom and figuring how I was going to go forward and live my life after him,’ she said.
‘[The diagnosis] broke my heart. I think I on purpose didn’t see the changes. All had to do was look in his eyes and know what he was there.’
She said she hopes the message people draw from her book is to be positive and to cherish the time with their loved ones.
‘I want people to remember to be positive and to the make most out of every single day,’ Jo Ann said.