Good pics, Mrs George. Hope that you have recovered from the ordeal.
gwa
Pictures
lol Bob!
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!
(there were also wild buzzards and eagles)
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!
(there were also wild buzzards and eagles)
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
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
-
TwistedHelix
- Family Elder
- Posts: 602
- Joined: Fri Mar 25, 2005 3:00 pm
- Location: Northamptonshire, England.
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,
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
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
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
what do you want me to say bob ? 3 years is allot of ms timePosted: Thu Aug 21, 2008 5:50 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.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
This has been my experience and I do not believe that there is anything out there now that helps us once we get out of the RRMS range of the disease.Terry wrote: 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 think that robbie has gotten much worse even after trying everything he could find to try. As we get worse, it is difficult to remain positive and he has become more negative as his disease limits his life more each year. I think this is normal behavior for a person who has a chronic, debilitating disease that is incurable.
Good luck robbie and all of the rest of us who are fighting this crippling illness.
gwa