Diagnosis: Transverse Myelitis

 United Kingdom

In Memory of Geoff  Treglown

The following article appeared in SRNA Newsletter in 2008, shortly after Geoff passed away. He died from secondary complications of transverse myelitis – a pressure wound that became a systemic infection. His passing was tragic and heartbreaking. I think about Geoff and miss him often. Shortly after Geoff died, I was contacted by Geoff’s attorney who communicated that he was settling his estate and that Geoff had left a donation to SRNA. Geoff had never discussed these intentions with me or with anyone else. I was not surprised by his generosity. Geoff’s gift to SRNA was and remains the largest donation we have ever received. Jim, Debbie and I decided to deposit the entire amount into the bank and to use it when the time was right to professionalize the organization. And that is precisely what we did, using a portion of these funds to hire Chitra Krishnan as our first executive director. Under Chitra’s leadership, the process of professionalizing is well underway with the development of an engaged board of directors, the hiring of staff, and the expansion and creation of innovative programs, all of which are focused on improving the quality of life for people who have these rare neuroimmune disorders.

Geoff made an enormous contribution to SRNA during his lifetime, through his volunteer work to offer support and education to our community. I can only hope that Geoff knows the incredible impact he has made on our community through his remarkable generosity. Geoff gave SRNA a future! I will forever be grateful for what he has done for our community; and I will always be grateful for his kindness and our friendship. I also hope that our community will always remember Geoff and the legacy that this remarkable human being bestowed to the people he cared about so deeply.

– Sandy Siegel, President, The Siegel Rare Neuroimmune Association

Originally published on page 27 in the 2008 Fall SRNA Newsletter

Geoff Treglown recently passed away. Geoff was such a kind, caring, and loyal friend. I don’t remember the details as to how or when we met, but Geoff must have contacted me after he found SRNA on the internet. That’s the way I meet most people in SRNA community; particularly when they don’t live in the United States. Geoff had TM and he also had Parkinson’s disease. Geoff was the consummate British gentleman. In our telephone conversations and our emails, Geoff was always concise and to the point. I don’t know whether Geoff found my lengthy emails and long conversations entertaining or bewildering; he was always too polite for me to tell. Geoff was such a good man.

Geoff described his life to me in one of our hundreds of email exchanges:

“I am a bachelor whose parents and only (much older) brother all died many years ago. In fact, the only relations I have are two cousins who live at the opposite end of the country. We exchange Christmas cards and only ever meet when there is a funeral! I am very content with my lot. I have retired (5 years ago) to a very beautiful part of the country after 37 years as a teacher. It is a lovely backwater with negligible crime or problems; England pre 940. A sizeable proportion of the village’s population (a third?) are retired off-comers, like myself. Everything is done in a very relaxed manner. I am 65 and usually the youngest at any meeting. Before that I lived just outside Oxford and taught at a fee paying boarding school, Radley College, at various times being i/c of chemistry, science and IT)”.

In 2000 Geoff volunteered to be SRNA support group leader for the UK and to handle all of the mailings to the UK. As the UK represents the largest number of SRNA members outside of the US, this was an enormous help to us and also a tremendous savings in postage. Geoff mailed the newsletters and journals and he also mailed the new member packets that are sent to people when they sign up for SRNA membership. At first, I sent boxes of materials to Geoff for the mailings. Then Geoff found Lew Grey who was able to help Geoff with the printing of the materials. So, Geoff and Lew were able to take over the entire printing and mailing operation. Also, Geoff volunteered to take over the mailings for all of our members in Europe. I know that Geoff paid for a lot of the materials and the postage out of pocket. He never talked about it or asked for recognition for it; Geoff was so generous and he was very private and quiet about his generosity. Whenever Geoff created a new membership packet, he would send me one so I would have a sample of what he was sending out. And I always remarked to Geoff that what he was sending to our members looked better than what I was sending – and it did! Geoff was a perfectionist and a professional; even in his volunteer work. Geoff was so dedicated to his work for SRNA.

Geoff made himself available to so many people across the UK and Europe. I know that Geoff helped so many people by listening to their issues, by offering excellent guidance and information and by sharing his own experiences. Geoff was there to help people through their most challenging experiences.

Ann Moran held a wonderful support group meeting in Ireland and Dr. Kerr and Chitra Krishnan attended and made a presentation to our members. Geoff was able to attend the meeting in Ireland. I saw Dr. Kerr just before he left for Ireland and I told him all about Geoff and asked him to be sure to find Geoff; I told Dr. Kerr what an enormous contribution Geoff was making to SRNA community. I never had the opportunity to meet Geoff face to face. I am so pleased that Dr. Kerr and Chitra were able to meet him.

Geoff had experienced a fall and was in and out of hospitals for months. It was such a difficult and frustrating time for him. Lew and Margaret were able to stay in touch with him by phone, but the rest of his friends had a difficult time communicating with him. We all sent Geoff cards so that he knew we were thinking of him. And so, that’s how it was. I received a phone call from Margaret, our support group leader in Scotland, and she gave me the very bad news about Geoff’s passing. I just stood in my kitchen and cried. I felt so helpless and empty. What a horrible loss.

My heart is just totally broken.

I had mailed Geoff a card about a week and a half before he died. Margaret had phoned Geoff and a friend told Margaret that my card was on his bed stand and that she had read it to him. I at least felt relieved that Geoff knew that he was in my thoughts and in my heart; it helped me to know that he knew just how much I cared for him.

I am so grateful that Lew (our support group leader in the UK) and Federica (our support group leader in Italy) were able to attend Geoff’s memorial service and represent all of us from SRNA community who were not able to be there.

Geoff helped so many people over the years, as a teacher and in all of the wonderful work he did for SRNA. Geoff is going to be missed so much by everyone who knew him and cared for him. He made such a difference in so many people’s lives, and especially mine.

We love you, Geoff.

Sandy Siegel