hiya cherie and sally and all

tell dave hi.

i am hanging in still working with many adjustments made.

finally found two neuros that are competent enough to at least recognize there is a neuro progressive problem. one is in St Pete and one locally. so i finally have neuro's to work with. both neuro's agree its either spinal cerebullar ataxia, or something very similar. or basically can say chronic degenerative progressive ataxia. I discussed with both neuros genetic testing but they agree with me, no reason as results won't change anything. i have no children so no reason testing for that purpose.

also a new PCP that is just as wonderful.

was referred to PT which I just finished Aug 29. it was more PT for maintaining what I have but really can't say it helped much. but at least i have excerises of stretching and some strength exercises i can continue doing here at home.

I am using two crutches or a wheeled walker all the time. plus rec'd AFO's in Aug and a new custom made pair just yesterday.

walking any distance is almost impossible due to ataxic gait, imbalance, weakness and bone pain etc....

still going to disney as often as possible using my personal Revo scooter.

have been considering a travel power chair just to use for those short trips like to malls, stores, public buildings for appts etc... as i find the Revo although great for the parks can be rather bulky in tighter spaces. but of course insurance won't cover anything as I don't need it in my home fulltime or to complete ADL's. grrrrr

Am going on a Disney Cruise in Jan 07, for 7 nights HOORAY!!!!!! Can't wait and so excited.

I keep going although some days I just want to stay in bed.

now if I can get Disney to use some of their Magic to have us skip Oct, Nov and Dec so its time for the cruise LOL

how are you both? and how is everyone else?

gentle hugs
marfla
orlando