Living with MS: Hope at last

“When you can’t walk down the street without thinking about every tiny step in case you fall into a heap on the pavement — which has happened more than once — you start to appreciate every little thing and take nothing for granted,” he says.

Schulman’s MS — now in the progressive, more constant stage of the disease — may have forced him out of his career as a Human Resources director into setting up his own home-care business, but his bucket list of desires are as ambitious as anyone teetering on the precipice of midlife.

His first one — to become a rabbi — was ticked off three years ago; an incredible feat of learning in the face of cognitive and memory challenges, that was recognised and lauded by Chief Rabbi Ephraim Mirvis, Dayan Menachem Gelley and his study partner and friend, Rabbi Chaim Kanterovitz from Borehamwood and Elstree Synagogue.

His second — to become a mentor to young people — was similarly struck off the list recently when he was appointed as one of the governors of Stanmore College of Further Education.“I’m not a pulpit person but being frum is about wanting to help and inspire others,” says Schulman, a former trustee of the MS Society. “I have a long career in HR and these skills, plus my MS experience, mean I have a lot to give back. I want to support younger people especially.”

Third on his list is a desire to get married and have children, something he flip-flops with emotionally because of his reluctance to “be a burden” with his deteriorating health. “I’m the one with MS and I don’t want to give that burden to a wife and children,” he says. “Of course I love the idea of settling down but it doesn’t seem fair. I have been out with a number of girls, some of whom called an end to the relationship because of my health, and I don’t blame them for it. In the meantime, I spoil my best friends’ children rotten and, apparently, they adore me, so maybe that has to be enough.”

Also on his bucket list is a desire to play the trumpet — “I have always loved Miles Davis, Louis Armstrong and Dizzy Gillespie. The passion that goes into their music and playing is unbelievable” — and to see the Northern Lights, learn to meditate and to sharpen up his already not-so-bad cooking skills.

“Up until about six months ago, I’d make everything from scratch — hummus, falafel, cakes, challah — and no-one’s died from my efforts yet!” he jokes.

“But now I can’t stand in the kitchen for long periods or hold a knife very well so I’ve had to slow down, which is a shame.”

Schulman’s final entry on his bucket list is especially poignant, in view of the fact his disease is currently rated a six on the disability measure for MS, and by seven, most are in a wheelchair.

“I want to stop MS, particularly mine,” he says. “I am realistic though. Even if they found a cure today, it could be seven or eight years until it went through all the trials and hit the market and that might well be too late for me.”

He hasn’t taken any drugs for years, believing them only to work as a placebo with little research to back them up, but he is impressed with a fairly new treatment — hematopoietic stem cell transplantation (HSCT) — a process that, in effect, wipes and reboots the immune system by harvesting stem cells and using chemotherapy. More than 2,000 people globally have received HSCT with a 75 per cent success rate of halting any further progression of the disease.

Trials are very limited in this country so Schulman has decided to have the treatment in Mexico — “it has a zero per cent fatality rate and that appealed” he jokes — and started fundraising for the £60,000 costs a few months ago. Incredibly, thanks to a number of generous donors, he is now just £7,000 off the final target.

“For the first time since my diagnosis, there’s actual hope,” he says. “It’s created a light at the end of a tunnel. I have a friend with MS who went to Mexico to have the treatment recently and she could barely walk a few metres and now she’s walking 3km a day! I don’t know what will happen for me but to think I might have more of a normal life and get to achieve what’s on my bucket list makes it more than worth a try.”

The treatment will take just under a month and Schulman hopes to go in July.

“It’s meant to be very painful and I have a few friends who insist on being Job’s comforters to prepare me for that side of things but I’m trying not to think about it,” he says.

“For 16 years, I’ve just accepted my diagnosis — that I’d have years shaved off my life and end up in a wheelchair — but this has given me real hope.’

 

To help Gideon Schulman with his final fundraising efforts, click here Or donate via the charity Briut VaOsher