First of all I totally disagree about continuing to see a Nero to stay on top of your ataxia. I look forward to going. I go on a regular basis for quite a few reasons. I'll list as many as I can remember right now I'm sure I forget to include a few maybe other's here will post some too.
To stay connected to find out what's is new in advancements for SCA.
To maintain where I'm at. For me it's good to nip any symptoms in the bud before I allow them to get beyond my control and get another's view of ways around them if possible. The key here is their VIEW. Sure they have book study and school on medical information that I don't have but I live in my body they don't know the details of that really. So I pick their brains while there and take what I like and leave the rest. They aren't God. They don't know everything.
Also I want to get confirmation of where I'm at now and to show them there are people that have ataxia that can work on their symptoms to help them get better with them. They need to spread that word that it is possible to help yourself to different degrease.
As a team member to work with problems that arise.
I have to be honest with you. I don't go to see a Nero to get a magic pill to make this ataxia go away, because that wont happen in my eye's, and that would depress me if I did. I also don't have a Dr or team of Dr's that tell me that there isn't anything I can do. Maybe it's time to find a new one that agrees with a different way to think, progressive maybe? I did run across a few at first until I found I got so mad at that that made me do something about my state and show them I can do......................... I really didn't listen to them when they said that because there is always a fist time for everything.
I'm not going to give into this ataxia or give up on myself and you shouldn't either no matter where your at with your ataxia something can be done to make things better. Even at the National Ataxia Foundation Conference the Dr.'s on the panel said there is new hope especially right now with all the advancements in finding a cure. I'm sorry to be so blunt about this but accepting what Dr.'s tell us about our SCA just makes them do it to new diagnosed ataxian's and I don't feel that's a good picture to give because it's NOT true! Just because they don't know doesn't mean it's true.
So now to answer your question: I eat my meds as vitamins and minerals I need daily and always on the lookout for foods and things I can do to help with emotions, ackes and pains, funtions etc.even if they are for other diseases. I'm interested in how our brain works and try to exercise that as well as my body daily to fend off problems before they rise up.
As far as Hobbies go, I scrapbook for my Grandkids to let them know about their lives growing up and how I see things so when I am gone they will know what I stood for and wasn't for.
What helps me get through is reading my NIV Bible each morning. It's positive to me. It took me lot's of deep thought after reading a scripture and decoding what it means to my life. I want my life to count. Knowing who I am in Christ and realizing since I'm in a new chapter of my life there has to be a reason for it and using the ataxia for actually helping another person in someway even if it's small actually helps me feel real JOY daily.
All of it takes real work. I also schedule a day off in-between and have a scheduled pity party but won't alow myself to stay there long cause logically I know it's not good to be there too long. I tell my body what to do. If I let my body and brain go on how I felt I'd be in trouble. Because I research regularly and know our body is ruled by our thinking I choose what goes in it and comes out. If I start to have a bad thought or mood etc I ask God to help me understand it or at least have more strength to go through it not take it away because I must have it for a reason. Either to learn something from having go through it or to be able to use that to help someone elce go through it. It took allot of asking God for wisdom to understand the Bible and other things that happen in my life. I don't always get an answer but that's where the trust comes in.
I think it comes down to making a choice how to be or what you want to allow into life.