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Experience Project.
I'm reviving the pictures thread. I have been away at church camp for the last week or so so thought I would add a couple of pics
This is me holding a European Eagle owl! He was gorgeous - and huge!
This very unflattering pic (hoping it will entertain you) is what happens when a person suffering from fatigue single-handedly manages a group of 8 10 year olds for 3.5 hours a day! My darling husband added the mice & took the pic while I was crashed!
Joined: May 04, 2006 Posts: 3323 Location: Mid-Michigan
Posted: Tue Aug 05, 2008 2:23 pm Post subject:
MrsGeorge wrote:
My darling husband added the mice & took the pic while I was crashed!
Just to make sure, your darling husband added the mice with knowledge that there was a huge European Eagle Owl in the area?
If I might ask, who does he have you insured through and are the rates reasonable? Does the insurance company consider being gored by an European Eagle Ow. to be "accidental death"/double indemnity?
Enquiring husbands want to know!
I can see I'm going to have to pull that ditzy blonde thing again!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
He would never put the mice knowingly in danger! He loves them more than any grown person should love a stuffed toy (but then so do I - they have a long history).
And yes, I suspect our life insurance would have paid out had the Eagle Owl decided to make a play!
Joined: Jan 28, 2005 Posts: 711 Location: Northern Ontario, Canada
Posted: Wed Aug 20, 2008 11:46 am Post subject:
http://www.youtube.com/watch?v=EJJpRR9gSfA
seeing people and how ms affects them says more than words. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: Nov 06, 2004 Posts: 365 Location: Ottawa, Ont. Canada
Posted: Wed Aug 20, 2008 4:36 pm Post subject:
Hey Robbie, I just saw your video. Your condition is pretty severe compared to me.
I don't know what to say except that I don't know if there isn't something else out there for your spasms. I have a patient with CP and she takes Dantrium for the spasms and Valium. You have alot of clonus and that is very closely tide to the exact position of your foot. Put the heel down and never the toes but I am sure you know that already.
It goes back to giving meaning to your life. You still seem to have a clear head, do enjoy reading? crosswords? poker? games? Have your tried your local community center to see if they organize anything, things to get you out of the house so you could see people... other faces....
Anything to keep you productive would be good.
Take care, Carole
Joined: Mar 26, 2005 Posts: 576 Location: Northamptonshire, England.
Posted: Thu Aug 21, 2008 7:21 am Post subject:
Hey Robbie,
It was really great to see you in real life, but also a little bit strange – you see, your movements seem to be exactly the same as I was a few years ago: clonus in your left leg especially, as Carole said, if you put your foot too far back on the footplate so that it's resting on the ball rather than the heel, and spasms in your legs when you straighten them out which are so unbelievably strong you're in danger of sliding out of the chair. If only we could control some of that strength, eh?
I know what you mean about some of the drugs to control spasm: in some ways a spasm is all we have left to call strength in our muscles and if you get the timing right they can actually be useful… If two carers lift me into a standing position into a frame, my legs will lock in a powerful spasm for a few seconds – just long enough to turn me around – so that I can transfer from bed to shower chair, etc. I certainly wouldn't want to be without that " ability".
I've tried dozens of different wheelchair designs, and without fail they've been horribly uncomfortable for long-term use – I don't know how Stephen hawking puts up with it! – so if you're spending all day in a chair I wonder if you'd be able to consider one of those powered riser recliners; I've even seen one model advertised which was a full size armchair that was also an electric wheelchair so you could drive it around your house, ( space, wide doorways and bank balance permitting), at one point I even wondered if I would be able to virtually live in a chair like that.
I'm glad to have met you in cyberspace, and since your video's on YouTube I hope some of the uneducated majority stumble across it and gain some insight into what life is like for us, _________________ Dom
Joined: May 04, 2006 Posts: 3323 Location: Mid-Michigan
Posted: Thu Aug 21, 2008 2:32 pm Post subject:
robbie wrote:
Quote:
Has MS affected your speech or is that the way you've always talked?
what do you think bob ?
I never heard you talk before you were affected by MS and you are Canadian so I imagine you have some degree of Canadian accent.
The video wasn't hard to understand but your speech did sound a little slurred and I didn't know if that's the way you've always talked or if the MS caused it.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3323 Location: Mid-Michigan
Posted: Thu Aug 21, 2008 2:50 pm Post subject:
Thanks Rob.
Yesterday I searched back to your earliest posts, and although making that kind of comparison is VERY subjective, there sure is a lot of difference in your posts between then and now.
robbie wrote:
Posted: Fri Jan 28, 2005 6:36 pm Post subject: Is there anyone out there from Canada
I have been to my GP and have been told he is not comfortable prescribing LDN for my MS. I have had it now for 12 years and have graduated from R and R to SP. I was on beta interferon for 7 years but have recently stopped this treatment and am looking for others. LDN sounds like it's somthing that every one with MS should try. Wheather it helps or not it's somthing that the person with MS and i repeat the person with MS has to decide for him or her self. I have been unable to find any way of getting a script for this drug. Please any one that can help me tell me what to do! thanks rob.
_________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Bob, I did the same thing some time back. I found Robbie there looking for answers, struggling to control his disease, doing all the things so many of us are doing now.
I never assumed I wouldn't end up where you are now, Robbie. (Sorry, though, for stalking your posts.) Of course I hope I don't. I heard a neuro say that no matter what you hit MS with- meds, chemo, whatever, in the long run it will do exactly what it wants to do.
I just keep hoping you'll find a way to be happy, or satisfied, or something. I know I might follow in your "footsteps" in this MS process, and I am watching to see what my future might look like. It helps me come to terms, make plans, and remember what things are important and what are not.
Dom, as always, you are the master of words. Were you angry for a while? I think I remember you saying that you were.
Robbie, hang tough.
Terry
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Just to make sure, your darling husband added the mice with knowledge that there was a huge European Eagle Owl in the area?
Of course I hope I don't. I heard a neuro say that no matter what you hit MS with- meds, chemo, whatever, in the long run it will do exactly what it wants to do.