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Ben and Claire's adventure to Davis-Dafoe land!

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
You guys might know this already but so that people don't get the wrong end of the stick I am NOT having treatment with Prof Davis. Prof Davis is a researcher, not physician ofcourse. We are staying with them while I go to OMI and Gordon Medical.

Just in case there is any confusion as that needs to be made clear! :)


B
 
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You guys might know this already but so that people don't get the wrong end of the stick I am NOT having treatment with Prof Davis. We are staying with them while I go to OMI and Gordon Medical.

Just in case there is any confusion as that needs to be made clear! :)


B
Yep, that does clear it up, thank you, but now we want to know what treatment you'll be getting at OMI & Gordon Medical. :)
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Yep, that does clear it up, thank you, but now we want to know what treatment you'll be getting at OMI & Gordon Medical. :)

Hey Andy. Who knows? Hopefully Saline IV, will be getting extensive testing. Basic stuff the NHS stick their fingers in their ears about, and more advance stuff. I have some ideas about what may be going on and not helping.

But the main reason is testing and thus options. Opportunity to try something that may give me just 5%. It may not happen-and im comfortable with that, but at least I will have tried. :)


B
 
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Gingergrrl

Senior Member
Messages
16,171
You guys might know this already but so that people don't get the wrong end of the stick I am NOT having treatment with Prof Davis. Prof Davis is a researcher, not physician ofcourse. We are staying with them while I go to OMI and Gordon Medical.

That is what I assumed (that you'd be going to OMI) but did not know about the Gordon Medical Part. But it makes sense while in No CA to get as many opinions as possible. I wish you the absolute best on this journey.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Did not know you were so severe Ben. Makes all the work you do for the community that much more impressive. Thank you

I had exactly the same thought @Ben Howell . The energy you put into facilitating communication, the promptness with which you reply to queries and the good humour and calm that you do it all with is impressive. That you can do that while being so ill, well, it's a great credit to you and also to Claire who obviously supports you so well.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Did not know you were so severe Ben. Makes all the work you do for the community that much more impressive. Thank you :)!

I had exactly the same thought @Ben Howell . The energy you put into facilitating communication, the promptness with which you reply to queries and the good humour and calm that you do it all with is impressive. That you can do that while being so ill, well, it's a great credit to you and also to Claire who obviously supports you so well.

Thankyou @Rick Sanchez and @Hutan you're both very kind. It's only since June last year. I was moderate until then. But as we know it can get much worse and I am fortunate, though hard to feel like it sometimes, that I am not as severe as some. For example while I cannot lift my arms/legs or walk at all without instant muscle shaking and weakness, I can still speak and type on iPad for which I am grateful for. I am just annoyed I cannot help more right now!


B
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Part 3:


I managed to rest all evening on Janet and Ron's sofa in their library. Their sheer collection of literature is very impressive, as are the beautiful monuments that adorn the cabinets. I was waxing lyrical about the house and the rooms all night like a broken record. Massive ceilings, beautiful wood, huge rooms and lobby's. So very different to UK architecture and bursting with character. I noticed as I was brought inside Ron's extensive collection of awards and lifetime achievements, quietly sitting on one of the tables. A reminder of the incredible intellect of this humble man.

We talked about the travel and flights whilst I was able to lay down. It felt incredibly natural to be there, much like reuniting with old friends. Claire even fell asleep for 2 hours in front of them which provided me with a giggle (shouldn't that have been me?!) but it was so welcoming, cosy and warm it was hard not to.

We talked science, politics and watched a strange US programme that Janet likes where people shout at the screen about what Donald Trump has been up to that day :D (what's the name of it?!). Anyway, it was on MSNBC. I was able to watch a little as the klonopin helps the sensitivities, so that was nice, even if I couldn't take any of it in due to cognition.

We had been fed very well on the plane, but having been up for 20hrs straight were still pretty hungry so Ron decided to get a Chinese. It was delicious and my first Chinese in maybe 3 years! A celebratory meal that was well worth it! I was almost pinching myself at the situation, having travelled 5000 miles and quietly eating a Chinese next to three of the most important people in the world to me, as if it was just a casual Monday night. A very special, understated moment for me.

After 24hrs of being awake straight we turned in for the night, saying goodnight to Ron and Janet with a hug. Janet was about to start her shift with Whitney while Ron went to bed. I've said it before and I will say it again-the amount these two angels do and balance daily is astonishing. A true devotion of love and teamwork.

I was out like a light.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
@Ben Howell it feels slightly unreal that you can do this. The planet somehow expands mentally when you have ME, distances seem much larger. In 5 years I haven't been further than Bradford on Avon or Taunton (about 45mins in the car).

Lots of concessions were made, and yes it feels unreal to me too. I am in a constant haze, with no strength but my dear wife pushes me and with specialist support from the airlines and a bed, months of planning, it was still extremely difficult but an opportunity I felt I could not miss.

I didn't have much choice-I was given a remarkable opportunity, and knowing that it may have made me permanently worse I still took it. I couldn't keep going with paralysis during the day and no QOL and the NHS doing nothing. All of our symptoms express slightly differently in severity, and fortunately since August when I could not even roll over in bed and was spoonfed I have improved to the point where I can at least get into a wheelchair. I took the chance and may pay for it permanently but I hope not. Don't get me wrong, it's the craziest thing I've ever done and I have done some crazy stuff :)



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Mary

Moderator Resource
Messages
17,335
Location
Southern California
It was pretty grey weather wise and no American we know is allowed to make jokes about UK weather anymore, especially after the ridiculous (but beautiful) amount of rain that night!

Ben - I enjoyed your journey's tale very much and am so glad you and Claire are with Ron and Janet. I'm sorry to hear that Whitney is unable to have visitors - I think about him and his family daily and though not religious, I pray anyways for them (and everyone here).

You may know this (or not), but this is the first real rain California has had in probably 7 years. We've had a severe drought for years, but thanks to an unprecedented amount of rain, northern California has finally been declared out of the drought, although next year could easily go back to no rain. I'm in southern California, and we're still in drought conditions, but much better than before thanks to several storms - we :love: the rain! (it's been so long) So you were just fortuitous in your timing! (or not ... any other year and you would have seen our famous sunshine)

Thanks also for everything you do on the board and I look forward to your next installment! :)

(P.S. I watch MSNBC, more specifically, Rachel Maddow, daily - she helps make sense of our crazy new world!)
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I took the chance and may pay for it permanently but I hope not.
My bet is that you will benefit enormously. I took a transatlantic flight to see a doctor with the same concerns (though I wasn't as severe as you are) and amazingly, I recovered from the trip in a few weeks. Just the positive experience of finally having the chance to see good doctors, get good testing etc. is like a tonic.
 

Sidereal

Senior Member
Messages
4,856
@Ben Howell, reading this I can only imagine how surreal all this must feel. Wow. So happy for you.

For what it's worth, years ago when I was in the condition you're describing I took a flight to go abroad to access medical care. Long boring story short, I had no choice but to get on a plane because any further medical care was denied to me in this country due to an insane MD I met once who went on a vendetta against me and polluted my medical records with lies, defamation etc. He even went as far as to write to and call my other doctors to urge them to deny me further investigations. I strongly suspect he also called my workplace because he said he knew my supervisor (we were all working for the same medical school) and he had kept asking me during the appointment if I'd be fine with him talking to my boss because I'm obviously "having trouble coping and need help". I of course said no but I suspect he still went ahead and did it because I was treated quite badly in subsequent months. Anyway, while I did feel absolutely awful during and after the travel it didn't result in any long-term setbacks because I used a wheelchair and loaded up on beta blocker and Valium.
 

Gingergrrl

Senior Member
Messages
16,171
I am just annoyed I cannot help more right now!

Ben, are you kidding?! You are so helpful to everyone, do not underestimate all that you do.

We talked science, politics and watched a strange US programme that Janet likes where people shout at the screen about what Donald Trump has been up to that day :D (what's the name of it?!).

Hmm... we must watch the same shows LOL.

I didn't have much choice-I was given a remarkable opportunity, and knowing that it may have made me permanently worse I still took it.

Agreed and I would have made the same choice if I were in your shoes. It is a huge struggle for me to get up to OMI w/wheelchair so I can only imagine the journey from the UK.

I'm in southern California, and we're still in drought conditions, but much better than before thanks to several storms - we :love: the rain! (it's been so long)

Agreed and I am here in So CA w/Mary and this is the most rain that I remember in many years.

Just the positive experience of finally having the chance to see good doctors, get good testing etc. is like a tonic.

Agree on this too and it makes such a difference. I had lost hope for a while and now I have it back.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Unfortunately no. Whitney can't tolerate hardly anything. He can't even tolerate us, but no choice. We have to hook up his food, take out pee, (et al), and fix covers, etc. we tiptoe and don't touch him. No sound. Eyes covered. His schedule is now keeping me up till 8-9 am, so I sleep in day and then get to hang out with Ben and Claire. So nice. Who's next???

Janet - what a kind offer! One of my sons and his family live in your neck of the woods - Woodside - I get up there about once a year. Maybe my next visit (I don't know when it will be) I could sort out a short visit with you and Ron?
 

Gingergrrl

Senior Member
Messages
16,171
Janet - what a kind offer! One of my sons and his family live in your neck of the woods - Woodside - I get up there about once a year. Maybe my next visit (I don't know when it will be) I could sort out a short visit with you and Ron?

Oooh... @Mary, can I come with you LOL. Don't you love how we are all inviting ourselves over? I am kidding (sort of :D) but maybe I could coordinate my next trip to OMI (no idea when this will be) with when you see your son (and we promise to only stay for five minutes to say hello to @Rose49 and then quickly leave them in peace LOL).
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Oooh... @Mary, can I come with you LOL. Don't you love how we are all inviting ourselves over? I am kidding (sort of :D) but maybe I could coordinate my next trip to OMI (no idea when this will be) with when you see your son (and we promise to only stay for five minutes to say hello to @Rose49 and then quickly leave them in peace LOL).

That would be great to coordinate our visits if we could! :) Yes, I hope I did not presume too much from Janet's post, I would not want to be a pest either. I will keep you posted about my next visit (but again have no idea when it will be, I'm hoping early summer) and you could do the same for you r next OMI visit :nerd: