My 15 year old niece was diagnose with FA just over a year ago. She gets very angry, very quickly, she gets paranoid aswell. She used to be very confident but since being in a wheel chair (not all the time only at school) she's not as anymore, Is anyone else suffering in this way?
Paranoid no, angry no, however, I am uncomfortable being in a crowd with a walker. She is not a fault on this if that is what she is thinking. She is just lucky like the rest of us. It is a challenge every day for all of us. There are no quick fixes. I am rarely out as I am in a rual area but, if I have to go into a situation I go. I would suggest she talk with her doctor about anxiety medications they will help a lot.
Yes I tend to get more angry than I used too. I have to work on that all the time with devotional readings and more imput of positive things. Garbage in Garbage out. :0)
Self noticing is another thing. When anyone feels like they are losing more and more control in doing things it would make anyone angry. Using that anger in a more positive way can be helpful though.
I agree with Ran about meds but only for the short term though so she doesn't get reliant on them. Also would she be open or is it doable to seek out counseling for some helps? That is until she can learn how to manage her anger. IF she's a willing patient that is. If not there isn't anything that can be done until she stops fighting the thought of having ataxia. Learning to work with having it and acceptance is KEY I think! :0)
Positive cd's, movies, books, daily readings etc are really helpful.
But you are truly a caring Auntie to post this question and to care about her. She's lucky to have you in her life!
You can make a difference in her life and attitude by empathizing with her and letting her voice her thoughts fears and thoughts so she can get them out in the open and they can go away and maybe she has some fears that are not founded. The other thing is, can she go on a computer and join this site? Maybe that would help give her support and get tips to try out to see if they could work for her too.
Please keep us posted! :0)
I was diagnosed ten years ago with Sporadic Cerebellar Ataxia. I was 49 years at the time, am now 59 years young. I can't imagine being a young person diagnosed with ataxia, especially having to deal with being in a wheelchair (I only use a cane). Also, FA causes other severe health problems that I do not have. Ataxia is extremely frustrating and challenging! I don't know if FA causes cognitive and/or emotional problems. Hopefully she sees a neurologist who is an expert in FA. Maybe a therapist can help her deal with FA. As Ran suggested, talk with her neurologist about these issues, as possibly, medication may be helpful. My best to you... ;o)
I was diagnosed wih FA when I was 15 too and can completely relate to the what you have described. I wish I could give you advice as to what to do, but I'm stil struggling wih it myself.
Personally, it really angers me when my family takes the "you can still do whatever you want" mantra. Sometimes just some undestanding and hand-holding is in order. I understand it is irritating to watch/deal wih someone who seems like they're just in self-pity mode but I guess when your neice gets to the acceptance stage of things within herself, which is different for everyone, it'll get better. I hope this helped.
Good luck and I hope that everything goes well with everything.
Of course she is angry. Who wants to be in a wheelchair in school at age 15?! But there are kids who have cancer, who legs are amputated in wars and what not. It is bad luck but it's inhumane to expect such a young person to handle all this alone and w/o meds. Therapy,meds and maybe medical marijuna will help. Also a dose of hope. Good luck.