A Memory of Mark

[COwithAMN]

Many of you on this forum will be aware that one of our number, Mark Bostock, passed away peacefully on the 29th of March. His AMN Easier name was bozzer.

Mark was 50, and in the last year had begun to develop the symptoms of the cerebral form of AMN. Having lived with our disease for almost 20 years, he knew what the potential implications were. He had also had to watch his brother die from this form of AMN three or four years ago. Mark was determined not to succumb to this worst form of the disease, and so opted to end his life on his own terms by travelling to Dignitas in Switzerland while he was still able. He was determined to deal with AMN his way and not to let AMN win.

I first met Mark 17 years ago, on the 5th July 2000. He had recently been diagnosed with AMN, and I was, I believe, the first person with the disease that he had managed to find.

We met many times over the years. We became trustees for ALD Life, and Mark served for a number of years as the Board Chairman. He was always active in trying to advance research efforts into the disease, and it was through his efforts that a global network of AMN/ALD charities in the USA, Australia and the UK was established. Mark did all this while holding down a demanding full-time management job in the technology industry. He was always ready with suggestions and solutions for dealing with the day-to-day problems of AMN.

I am glad that I was able to spend two hours with Mark a week before he travelled to Switzerland. We reminisced a little. He was serene and confident that he had chosen the right course of action.

I wanted to let everyone on AMN Easier know about our fellow-traveller. Because this forum now has many members worldwide, not everyone will have known Mark or perhaps be aware of the way AMN can sometimes turn even nastier. No-one knows why this can happen. Some estimates are that it occurs in perhaps 20% of cases. All the more reason for us to hang together and find ways to support each other.

A JustGiving page where you may donate to ALD Life to fund research in Mark’s memory is at justgiving.com/fundraising/... It also has a wonderful picture of Mark that typifies how many of us will remember him.

Chris

[Cherie]

Thank you Chris for writing this on here. He did a lot to help establish a link worldwide and would always be happy to give advice to us.

[eleni67]

Hi Chris,

I was deeply saddened to hear of Mark's situation. I was just pleased that he was able to deal with his AMN they way he wanted to while he still could. We know how the cerebral form of AMN can affect men as it did with Phil. It's so unfair and cruel.

[jolocny Volunteer]

We met Mark just 2 years ago and he made an immediate impression on us as a man who knew his mind, didn't suffer the AMN but lived it head-on. When we found out his decision we cried together - for the man we would miss. His memory is that of a strong man who tried everything and shared his many accomplishments with anyone who could see the life he put into living with AMN.

We are truly blessed to have known him, brief as it was!

[AussieBob]

Thank you so much Chris for your background and expressing your obvious love for the man. I knew him as the Australian who gladly became part of the ALD-AMN Global Alliance (AAGA). We first met in San Clemente when I flew over to meet the him and the others and we formed the AAGA. It was Mark who was the driving force to make it happen and it did. He saw a lot including the sorrow of his Brother dying from this wretched disorder. A great deal has transpired since that meeting in 2011 and he can be proud of his achievements. He was a good man who cared and made things happen and a bloody good Pom!

[Allder]

Have been feeling sad since I read this post a few days ago. Since I'm living in Sweden and joined this forum only 3years ago I never saw Mark in real life, can't say i know him at all. But Mark did write to me a couple of times just to check how I was doing. A unselfish person that gave me hope and reminded me to think positive.

I hope we continue in Mark's track and be here for each other.

[JasonHarnum]

Hi Chris,

You met with Mark several weeks before he left for Switzerland, was he that bad cognitively? I mean to reminisce and chat with you for a few hours is pretty good. Or, was if he in too much pain or lost the ability to move?

[COwithAMN Administrator AMN EASIER Volunteer]

Hi

I am not going to give a detailed commentary on his physical or mental state. He wasn't in pain. We were able to chat quite well. His mind was still sharp.

[JasonHarnum in reply to COwithAMN]

Forgive me, I didn't think I was asking a personal question, I didn't mean to offend you.

[COwithAMN Administrator AMN EASIER Volunteer in reply to JasonHarnum]

No problem and no offence taken. I just felt it would be a bit unpleasant to discuss the detail of Mark's condition here.