thanks Cherie. I feel I have the best answers possible and doubt need many more. not that I like the answers or want this, yet finally having neuro's putting a name to it, and although I am choosing not genetic testing to see if SCA 2 or 6 or 25 or ....... really doesn't matter to me. having the number assigned won't change anything. it is what it is no matter what you name it.

i feel finally confident in a neuro and PCP. they are upfront and straightforward with me on what "Could" come or happen. yet will also admit no one knows for sure what will happen, if will happen, when etc....

so its sorta like MS no one can tell you the future. just take it day by day and what is thrown at you try getting thru best way possible for the person.

don't get me wrong, i have my down times. actually right now going thru that grieving process of the new level of progression, frustrated i have such difficulty doing the most simplest tasks, frustrated that i can't jump in the car, drive to the mall and walk around shopping for hours. and many more frustrations.

with work im fortunate that i can continue although making adjustments as needed. company bought me a new SUV which is easier getting in/out as I had a Civic. boy was it hard to get in, dropping down into seat, then having to lift myself out. i use my Rollite wheeled walker with seat to carry my luggage, briefcase etc.... in/out hotel/home. use the same walker to carry groceries, other items from car to house door, or vice versa.

just have to find other ways of getting things done. and as my physical therapist harped on me to find ways to conserve energy so have enough to do other things I need to do. PT harped on me as I hadn't been using my HC placard just felt there would always be someone else needing that space more than me. Well that still is probably the case, but I use mine now as it saves a few steps which in turns save patch of energy.

I am so looking forward to this cruise. Oh Cherie did you take your scooter on a cruise you've been on? I am trying to figure out what is best to take size wise, my Revo, a smaller scooter or a travel power chair. I want something not too bulky to get around the ship, in/out the elevators etc... But never been on a cruise I can't visualize spaces on the ship.

would love to hear more how you and dave have been.

gentle hugs
marfla