There can be no doubt that Gwen Higgs is a remarkable woman who has fought MS, has undergone HSCT and is today a voluntary advocate for that treatment, including being an admin of several Facebook pages on the subject. She is always there with answers to questions and kind words of reassurance when needed.

Today is the first of two blogs that, together, will tell Gwen’s story.

 

The Life of Brian Gwen – part 1

There’s no embarrassment or coyness about Gwen. It is said that no true gentleman would ask a lady her age but my years as a journalist have killed off any qualms I may have had – so the question was asked.

She answered immediately, “I am 56-years-old and married for more than 33 years. My husband and I have three grown up sons. My original training and work was in scientific roles before becoming a stay-at-home mother for many years. After that, I worked in, and was a Governor of, a large comprehensive school – until ill-health retirement about three years ago.

Gwen lives in Witney in the UK county of Oxfordshire and was diagnosed with PPMS in 2009 at the John Radcliffe Hospital in Oxford. She described that moment: “It wasn’t a shock – more of a relief that I wasn’t imagining all of the symptoms which made daily life so difficult!

“The symptom which made my life most difficult was the dreadful, unrelenting fatigue. I woke up exhausted, had to rest after having a shower, had to rest after getting dressed. I’d come from work and just lie down until it was time to start all over again. I’d get through the day on sheer force of will.

“Then force of will wasn’t enough – I just could not keep going, I needed to rest………

I found it difficult to concentrate, couldn’t formulate my thoughts, started losing words, forgetting names………the infamous brain fog made daily functioning – let alone working! – extremely difficult.

“My walking was worsening. I had to hold onto walls and furniture to get from A to B. My legs would just seize up and stop working after a short distance. Walking like a drunk as a staff member in a school is not a good look!

“I started having bladder problems. On one memorable occasion I had a catastrophic bladder failure in a School Governors’ meeting – that was totally humiliating, to say the least. I was having problems swallowing food and drink – I’d frequently choke, which was both frightening and embarrassing if in company. I avoided going out to eat, or even drinking water during meetings at work, for fear of the coughing fits which would invariably ensue.

“Eventually I had to accept that it was better for all concerned if I left my job. That was very hard – I loved my work,” she added.

After giving up work, Gwen realised that her life was disappearing before her eyes. Her world had shrunk dramatically. She explained: “I could no longer drive to visit sons at University, or friends and relations further afield. I had to plan carefully before even popping to a friend’s house for coffee, because it would mean not being able to do anything else that day. My husband was having to take over most of the household tasks on top of his full-time work.

Desperate for help, Gwen took to the internet and, at last, found a glimmer of hope for the future.

She said: “I came across some blogs by MS patients who had a treatment called HSCT (haematopoietic stem cell transplant) which had halted their progression, and they had even had some improvements.

“I spent much time researching. I read every published research paper I could find which had any connection to HSCT, however tenuous. My scientific background helped enormously with the research; I was used to the terminology, understood how clinical trials worked and was used to deciphering the statistics.

“Finally, I decided that as my condition was worsening and there was no way that would change without intervention and, being told that no disease modifying drug is effective for PPMS, the best option was to have HSCT and at least not get any worse.

Gwen recalled: “I approached my neurologist and asked for her advice about HSCT. She was horrified; I almost laughed out loud at her expression.  She did everything in her power to talk me out of even considering HSCT. She told me it was dangerous, it wouldn’t work, etc, etc.

“But it became obvious during our conversation that she didn’t actually know what the procedure involved, nor did she want to hear it from me, or even look at the published research that I had printed out and taken for her. She said she’d consult her colleague who was ‘in charge of MS’.

“It was obvious to me that I was going to have to rely on myself, if I was to get treatment. So, back to the internet,” said Gwen.

 

Part 2 will follow Gwen’s life from this point, through her successful treatment, right up to today.