True love through an ALS diagnosis

NEWPORT, RI (WLNE-ABC6) – Bob Forster is 27-years-old and he can no longer walk, talk or breathe on his own. He was diagnosed with ALS two years ago.

His is an extremely rare case of ALS because, while about 6,000 new patients are diagnosed each year, the vast majority are between the ages of 40 and 65.

Bob is being honored this year at the ALS Association’s annual Evening of Hope. It’s not because of the rarity of his diagnosis, but for all the work he and his wife have done since Bob was diagnosed with the debilitating disease.

Bob was a typical, active 23-year-old when he met and fell in love with Casey Stotz. It was just after their year anniversary of dating, that Bob was first diagnosed with ALS.

Before that, the couple was very active. “We were always kayaking and rock climbing and hiking and biking and running around and just having adventures,” said Casey.

It was while rock climbing that they first noticed Bob was having issues with his grip, around March 2014. They didn’t think much of it, until it started getting worse. Bob was having issues with simple things like keys and started slurring his words.

After multiple different tests, he was diagnosed with ALS in September 2014. The official, second diagnosis came in December of that year. By that time, Bob could no longer use his right arm.

"But we were told you had a slower progressing strain, which is kind of scary if March 2014 to December, you already lost a whole limb, but that’s considered slow,” said Casey.

Knowing the grim outlook the diagnosis meant for the future, Bob took Casey to the cliff walk in Newport and gave her an out. He told her he completely understood if she couldn’t handle the situation and wanted to leave.

“And my response was, ‘Obviously I’m going to stand by you,’ because at this point we were so madly in love with each other that I couldn’t picture him being on this planet and going through that and knowing what it was going to be like without me by his side,” said Casey.

Bob proposed to Casey three months later in one of their favorite places on earth, New Orleans, right in the middle of a Mardi Gras parade.

Casey wanted a winter wedding, But Bob insisted on the summer because he wanted to be able to walk down the aisle. They were married June 20, 2015.

“And it’s a good thing because if we had waiting until the winter he wouldn’t have been able to. By October 2015, a year after the first initial diagnosis, he was in a wheelchair,” said Casey.

Things became harder after that, not only because of Bob’s condition worsening rapidly, but also because Casey cannot be paid to be his caregiver as his wife, even though she had to quit her job as an architect to give him round-the-clock care.

The Forsters consider Bob being diagnosed at such a young age “a blessing in disguise.”

“Having just paid off college debts, having no properties, no real assets, we were able to get him on Medicaid very quickly, within two years, which is still a really long time," said Casey.

They know most ALS patients have any even tougher road than them while fighting the devastating disease, so they’re working to change what they call a “flawed system.”

Casey focuses on caregiver rights, while Bob is working on “right to try” legislation, which would allow ALS patients to use treatments that are not yet approved by the FDA as long as they’ve gone through a phase 2 trial.

"No patient would be forced to try this treatment. It’s just if they so choose to want to try this treatment, it should be available to them,” said Casey.

Bob has personal experience with the impact the legislation would have on ALS patients. He was part of a trial that took cells from his body, turned them into stem cells and injected them into his spine.

In just over a month, Casey says Bob was able to get out of the wheelchair and use a walker to get around. However, now that the treatment has not passed a phase 3 trial, he can no longer get access to it.

“So frustrating,” said Bob through his computer that tracks his eye movement.

Bob also helped found a tech company that’s working on a communications device that would use nerve-ending to help ALS patients speak, rather than the eye-tracking, which can be very difficult.

Bob has even met with former Saints player Steve Gleason, who also has ALS, to talk about advances each of them is making.

With everything they and others are doing, the Forsters “110%” have hope for the future.

Their advice for other families going through a similar situation: “don’t be afraid to ask for outside help.”