Month: October 2008

Another note in the hunt for info.

One would think that since there are National and local MS Society that I would be able to find all the spiffy support they advertise on their sites. Yes, they sent me a news letter and I signed up for a series of pdf deals for newly diagnosed folks. They were Ok, but really did not cover anything not readily available via google.

I went to a support group that was suppose to be awesome. I was thinking cool, I will hear others and how they deal with stuff maybe even getting some hints in dealing with symptoms or life in general. But, what I got was a first hour spent listening to a sales lady go over expensive toilet seats and showers (they even have remote contol toilet seats) and then they discussed how cute a couple was that attended the group that week.

I ran into someone I had known via my other halfs work over 15years ago. She said come back the regular gal who runs these meetings is great and this was not very good this month. So, I did go back only to listen to the cute couples caretaker half go on and on and on about politics. The facilitator just let em go on and on and on. The group was smaller than the month before. Then the facilitator read some info taken from the National MS site. I sure it was great info except to those of us that do not know all the acronyms and study codes. Then the cute couple dude started up again.  Turns out the gal who did this group retired last month. The lady running it now is it. The aquantance I have there said lets go and we left early.

My partner decided to call the MS society and see if we could find another group, or get me signed up for something like swimming or walking anything – their site says they have these programs. Well, not exactly you can see how full the calender is here. Here is a list of programs they “offer”. Thinking she missed something or that we just were searching wrong she called. Well, if you want to go do lets say swimming you can sign up at the local recreation center and there is a group of MS’rs that do stuff together. Great my other half pays for herself to use the pool it is not an MS society program it is a group of folks that pay to use the pool and hook up. She also was giving some contact numbers of people who have some sort of support group but no one ever called back ;( The lady at the MS Society did mention they do bicycle rides – yeah the fund raisers. One, they are over with here, two I used to ride in those things when I could ride prior to even knowing really what MS was – we all just rode and walked to be doing something “good”.

So, either we are totally missing the right code to get into the club or we are just lost in the maze -either way I guess the MS Society mostly used their funds to support research.

I guess we made a Wrong turn in the maze?

As for the recumbent bicycle it was a no go ;( . I ended up taking it down the the local bicycle shop I used to work at. The owner is gonna sale it for me. Better than it just going back to storage. It was my adventure of the week. I actually got the thing into the back of my truck, found my way downtown and back. It was fun seeing some old familiar faces there. The end result of the excursion was a fell asleep when I got home.

The cool factor is I woke this morning and could walk about without having to be a wall huger.  I guess I loosened up a muscle somewhere? Balance still crazy bad but better able to hold myself straight to walk. I so hope this is one of those woo hoo deals where it is going away.

Of to hunt about the maze some more.