Hello all. As many of you seem to be located in London, I was wondering if anybody would want to meet. I would love to meet others with AMN. I will be going to Europe for Christmas and have a 1 day stop in London. I will be there on the 21st of December and staying near heathrow airport. Please let me know if anyone would be willing and available. Thank you,
Greg Allsup
Hello Greg
I'd certainly be keen to meet up. I live in North London - actually, close to "downtown" as you would think of it, so Heathrow is a bit of a drive for me. Are you at all mobile by tube (subway)? If not then let's see what is possible.
Chris
Chris,
That would be great. We can certainly take the subway. Maybe there would be a point somewhere in the middle. You know the area better than me.
I'm afraid I'll be 250 miles away watching Sunderland beat Newcastle again in what you call a 'soccer' match.
Best of luck with your meet up.
Have you been to London before? There is a fast train, the Heathrow Express, which will get you from Heathrow to London Victoria station in 15 mins. heathrowexpress.com/ You can book on-line. But you would need to go back into one of the Heathrow Terminals to get on the train assuming you are staying somewhere near.
We could meet at Victoria. I would travel by car, park somewhere and come and meet you using my scooter.
Chris
Hello Chris. I'm hoping you're still available to meet. We are leaving california tomorrow and will arrive in London on Saturday the 20th at 2 pm. We have already booked the ticket for the heathrow express and will take it to the Victoria station. I was thinking we could be there at 6pm. Hopefully that would work for you.
Hi Greg,
Yes, I can meet up.
I have sent you a private message (see under Messages) with some details. I've sent it there because it has my phone number which I don't want to air in public.
Chris
Well, we managed to meet up on the 20th Dec. Greg, his partner, and me and Mrs Ogden had a nice dinner. We succeeded despite some very dodgy meet-up instructions from me!
It was a very good meeting for both of us. There was lots to compare between the health systems in the US and UK. We did a lot of the usual swapping of ideas on how to deal with AMN symptoms. Greg is keen to come to our next ALD/AMN annual meeting, which is now planned for the spring of 2016.
The get together reminded me of the great benefits of actual face-to-face meetings when you have a rare disease like AMN. Of course it's a bit easier to find someone when one of you lives near a major centre. But I encourage everyone to complete some brief details in their profile, including your location. Remember that profile details are only visible to members, and your detailed location is not shown anyway. But you just may be living near someone who would like to meet up. Many members on here don't complete their profile details but please do so - you could be helping someone else close by.
All the best for 2015 everyone!
Chris
Chris, thank you for posting! Very often, a follow-up is not mentioned so the outcome is usually unknown to everyone. In December, I attended the AMN/ALD clinic at Kennedy Krieger in Baltimore, Md (I'm in NYC) for the first time and it was very helpful to speak with medical professionals who understand what I'm talking about. Please tell me: Where would your annual meeting be held? In London? I have friends in London and would also be keen on making a visit.
All the best to you as well!
Julie
Hi Julie
Thank you for commenting on my post about the meety-up with Greg and his partner. Yes I know all about the value of attending meeting with other patients and clinicians when you have a rare disease.
I have had the symptoms of AMN for perhaps more than 30 years as I was in my early 40s when I was diagnosed (I'm now 71). So I like to say I am living proof that you can have a good life dealing with AMN! It's only in the last 5 - 10 years that my mobility issues have meant that I have had to resort to walkers and electric scooters.
When I was diagnosed not much was know about AMN, and women weren't thought to get it at all. When I asked about meeting other patients with the condition I was told that they did not know of any!
Thank you for updating your profile with some details. That's good. Maybe there are some other folks near NYC you could meet? I need to make a trip to NYC sometime so if I do I will make an effort to meet you.
Our next meet-up for ALD and AMN patients will now be in the Spring of 2016. We are postponing it this year so that we can re-plan the event a bit and also because we wanted to move it to April-May time because the feedback was that a summer event interfered with people's holidays. We have not chosen the venue but it is likely that it will be near to London next time - so a short train ride from London itself.
I also see that you find exercise and physio helpful. I'm the same. I go to the gym three times a week but more importantly I do a stretching routine every morning which gets my legs loosened up quite a lot.
All the best
Chris
MIN102 trial update
Good news and bad
Speculation.
