WOW i was so happy and surprised to receive an email this morning with the link to here. Great seeing some familiar names.

wishing all the best.

marfla

Hey EPCOT buddy! How are you doing. Dave sends his best.

Hi Marfla, happy to see you here.

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

Sounds like you and MSCraig (now UNDXCraig ) are going through similar. You two ought to be comparing notes. In fact, I haven't seen him here yet. I think he hangs out mostly at MSFoundation forums.

Enjoy your cruise. Hope you get some answers soon. This has gone on for far too long.

I've had a rough year but am doing well now.
Cherie

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

Doors on the standard ships we've been on are 23" wide. My Pride Victory 3 scooter is 24" wide. Are you in an accessible room? Are there any available? If there are, they should not cost more and the doors are wider and the room to maneuver is great.

Yes, I take my scooter with me on the airplane and the ship. If I take the arms off, I can just squeeze it through the stateroom door and it is such a help with so many very long decks to traverse every day.

Ship will also provide you with a wheel chair and shower seat if you request it and they have inventory not already committed to other passengers.

I'll email you with what Dave and I have been up to!

I have an accessible room so doors are wider, walk in shower with seat, enough room to turn a scooter/power chair around in etc....

Disney states if you need a wheelchair you must bring your own. Of course they have them available for emergencies/sick bay.

If you can manage a Pride Victory, then I should be able to manage with my Pride Revo which is smaller than the Victory.

I thought about renting a go go which is even smaller or a travel power chair.

Not sure how much I will need the scooter but am thinking to conserve energy will use it as much as possible. Will be taking my crutches and Rollite wheeled walker too. To go into some ports you must tender, and depending on certain things I can't take the scooter. So can use the wheeled walker which has a seat. I don't plan to do much in the ports like excursions per sa. But I want to at least step foot there to just say I have been there <G>.

Disney has been great so far in offering guidance, assistance, etc... and keep telling me not to worry just bring what I need.

I did have to submit a medical form showing that I needed an accessible room. It didn't require a diagnosis, just info like mobility difficulties, allergies to foods, contact numbers for doctors if were needed.

Really Disney has and is going overboard to assure me that everything will work out, and to assure I will have a Magical time.

I am taking my Pal Mickey, his wardrobe is better than mine LOL. There are several of us going with Pal Mickey so should be fun getting photo ops.

maybe you and dave will get down here again someday and we will scoot around Epcot <G>

We had a blast with you and would do it again in a heartbeat if the opportunity presented. However this year with the MSF Cruise being from the West coast and airfare added and taking my parents...we're going to have to take it easy on travel.

So glad you have an accessible cabin. My recommendation...use the scooter most places on board except perhaps for the shows in the evening when you might want to get closer to the stage than an upper scooter accessible tier would allow. The diningroom staff will let you drive it to your table then park it for you during the meal and bring it back to you when you are ready to leave. Save your energy for Karaoke or game shows or theater or mingling and use the scooter for all your onboard travel needs.

I did email you and Dave has come home and says hi back at ya!

thanks for the guidance. i did receive your email. will respond later kk.

gentle hugs