Now, as a further three months have gone by, it is time to catch up with Julia’s progress at her home in the Bahamas — and you really must read this until the very end!
Interestingly, her recovery seems to have been unlike other patients who chose this treatment. She said: “I was told it would be a roller coaster ride. So far, I have just been seeing improvements. I had the usual stiffness and sore legs once I returned home, but I had expected that and just pushed it to the back of my mind and continued with life.”
Unfortunately, another part of her life has taken a hit, as Julia explained: “My constant four-legged companion, Baxter (pictured, left), became ill and was in and out of the vet on a drip. After two weeks I flew him to the U.S., where he was seen by a cardiologist who told me he had severe heart disease. I had the choice to keep him alive and see if he could recover some of his health, or let him go peacefully.
“He had lost 9 kilograms in two weeks, and I was having to force-feed him and attempt to get water down him. I wasn’t able to get his medication into him, which was vital for his partial recovery. I chose to let him go, which absolutely broke my heart.”
Family members decided that Julia should get away from the house for a while, to help her deal with Baxter’s loss. So, after confirming with Dr. Fedorenko that she could travel, they all went to Canada. It was while they were there that Julia started walking some 16–18 kilometers (about 10 miles) per day while sightseeing.
“My husband had told me that I would need to rest, but I felt fine, so once I returned home I decided to keep up the walking,” she said. “I worked my way up to 11 miles per day. Because I have always been a fit person, Dr. F. gave me his blessing to push myself in exercise.”
HSCT update: Walking and swimming
“A few years ago I used to watch adults swimming in the school pool when I was photographing students during their sports days. I remember wishing I could join in, but didn’t feel strong enough. My right knee is still giving me a few issues when I get tired, so I decided to try swimming because I knew it could help. I confirmed with Dr. F. that I could swim in a public pool, and then contacted one of the women who swims in the mornings. She told me to come down and give it a try. The coaches were fantastic, welcoming me to join for a week to see if I could do it. I used to be a swimmer when I lived in South Africa, so I very quickly got right back into training again. I now swim a mile each morning. Some days I am strong, but some days I really have to push myself.”
There was one panic a few weeks ago when Julia woke up with a numb left ankle. She explained: “My previous stem cell treatment, that was not HSCT, seemed to have gone well … until I hit the six-month mark and then the numbness started to creep back in. I thought the same thing was happening again.
“But I contacted Dr. F. who told me he thought I had just overdone it a little, so I took a break from swimming the next day and things returned to normal, thankfully.
“In the meantime, my boys decided that they thought we should get another puppy. I agreed that it was probably the right decision because I am still mourning the loss of Baxter. Storm, our new pup (pictured, left), arrived one week before a major hurricane (Matthew) hit us.”
Julia now continues to swim a mile, or slightly more, every day after she drops her boys at school in the morning. But she has reduced her walking to eight miles per day, on her cross-trainer, until Storm is ready to hit the road alongside her. (Stop Press: Storm has now been joined by Onyx).
And the VERY latest?
I’ll let Julia tell you in her own words: “Having had my treatment six months ago, off I went to Fort Lauderdale for my MRI to see whether HSCT had worked for me. I was positive, with all my improvements, that it had, but after I had been caught out once before with another treatment that was meant to ‘cure’ me, I needed to see it in black and white before I would believe anything.
“I traveled to Fort Lauderdale for a brain, thoracic and cervical MRI. It was a Jewish holiday so the radiologist couldn’t read the images until the following day. The moment I received the email I forwarded it to Dr. Fedorenko, who confirmed that my disease had been halted. I am so thankful to him, and the entire team in Russia, for giving me my life back again,” she said.
Let me repeat her words, “my disease had been halted.” And, I add:
It is my personal opinion that HSCT, which necessarily includes chemotherapy, is a positive, working treatment for MS. It is used to treat relapsing and progressive types. It doesn’t need more trials; regulatory bodies should get their acts together and approve it now. Need I say more?
50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.