A bit nervous and lost

General
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I joined this site weeks ago...but I am painfully shy and insecure when it comes to seeking out support and help. It took a bit of effort to even set up my profile...I think its because in my head I told myself that if I start becoming active on the site (or in any sort of support group), that would make everything too real and I was still in a state of disbelief after I was diagnosed and I didn't want to believe what was happening. I wanted to ignore it and make it go away. I also have a mental illness called Dissociation Disorder which branches into Depresonalization disorder and Derealization disorder. All make it hard to grow up and deal with my problems head on.

My real name is Crystal and I was recently diagnosed September 19th 2014 with Spinocerebellar Ataxia Type 2 (SCA2)...I just do not know where to go or what to do from here. I not sure how to handle everything.

I have told my grandmother and my sister, and also my boyfriend. All of them have been nothing but supportive and concerned.

My mother is dead and my father is not in the picture whatsoever. I am estranged from my 2 older sisters and half of my family, so I do not wish to inform. I find support on my mother's side (the grandmother that I told), my closest in age sibling, and my boyfriend.

Currently I want to go back to school as soon as I can to do a few things I want to do before I am not able to.

Nice to meet everyone.

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So pleased you found us .. there are lots of people on here with your type of ataxia and they all post at different times.

Very pleased to meet you.

Patsy/CA/UK.72

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Hi Crystal, welcome to the group :-). it’s not easy reaching out for the first time,
I well remember how I felt.

But, we’re all helpful and supportive here, join in the discussions and remember,
nothing is too trivial to ask :slight_smile: Best wishes xB

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Hi Crystal ^^

I'm 26 years old and I was diagnosed with the same kind of ataxia than you a year ago. I'm Brazilian and live in Rio de Janeiro. My neurologist said somethings that would help me. I practice pilates 3 times in a week and also make fisiotherapy with my hands to improve the motor coordination 3 times in a week too. He said that pilates and yoga are great exercises to improve my balance, and I feel safer to walk since i started the treatment. I would like to know you better, since our kind is the same. =]

Would you like my e-mail?

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Welcome, Crystal

You will find a lot of support with all sorts of wonderful people, older and younger, men and women from all over the world who have one thing in common and will understand you!
Best wishes to you!

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I think that you'll find lovely, supportive people on this site. They really care, are smart and have great ideas. Use it! As far as school goes- do it. I've had ataxia for 9 years. It's a huge surprise-I never heard of it. But you're on the right track. Best wises to you. Exercise. good nutrition are key so don't give up. From your note I don't think you will.

BTW- it took me 5 minutes to write this post with many errors. But sometimes joining an online support group is a great step. It allows you to think...

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Thanks for your courage to come out of the closet with this message. A Paleo, Gluten-free diet, yoga, meditation, and lots of walking in nature will slow the progression.

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Crystal...first contact is overwhelming. It takes some time and effort to move forward. Please check out

http://fightataxia.org

http://ataxicnation.org

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Hi Milk tea, I commend you for wanting to go back to school! Yeah! Knowledge is a good thing always!!!! I was devastated when I got the diagnosis too back in 2006. I really thought my life was over or going to be shortly. That is when I finally realized that I could either let the ataxia get ahold of my thinking and not go anywhere with it or make choices for my better. The life that I always knew and how I was, was over with, this was a new chapter I was going into now, because I got to have a new life that looked so differently. It actually changed me for the better I think. One I started living like you said doing some of the things you were always putting off before now. Yes I guess my motivator was fear driven to an extent but it's grown into a mission over these years.

I just can't do some of the things that I used to do, the way I used to do them that is and that is true. I'm ok with that. I'm constantly looking for new ways to do things I need to accomplish. I think looking at what I need to do, not as a chore but a choice that I get to make helps me. So what I choose to focus on is not what I cant do but what I can do and try to think out of the box to think of ways how I can do them. Kinda like a game that I play.

I started eating better than I was even though I thought I was eating well before and being more intentional about the foods I am willing to put into my mouth now. If they don't help my body and/brain I won't bother with them. I really believe that because of these thoughts and believing in a higher power something outside of myself (My belief in God got allot stronger since then), it's made a difference for my ataxia.

Another thing just because a Dr. or another person with the same ataxia, tells me it will be a certain way I realize everyone is very different and I can CHOOSE not to go there. People and Dr's can tell me how it is for them but that doesn't have to be the way it will be for me too.

For instance. I have a friend that was classified the same as me. But seeing our approach is much different we both have very different outcomes so far. She can't help but notice them also. She says she tried but can't do what I do. Well, it's a choice for every individual to make right? Yes it's challenging at times but I get to feel a challenge and take charge of it too what direction I would like it to go instead of it take ahold of me and just going along with it where ever it takes me.

So my advise is to try lot's of other's idea's to see what will work for you and help you. I believe this is just a self discovery time for all of us. I was always told that if you squeeze a orange you expect to get orange juice out right? When we get squeezed we see what we have inside and if we don't like what comes out we have the choice to change how that looks if we really want to no matter what.

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Good for you, Crystal, for your courage to put yourself out there. I think a site such as this is good because you will find non-judgemental people who have empathy and compassion.

I would encourage you to consider local support groups or organizations where you live, because you may need an actual person to lean on and walk with you through your course of life, especially when you feel most overwhelmed and discouraged.

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Patsy- I am very pleased to meet you too. Thank you for the reply, it makes me less apprehensive. I will try to keep active here.

Patsy said:

So pleased you found us .. there are lots of people on here with your type of ataxia and they all post at different times.

Very pleased to meet you.

Patsy/CA/UK.72

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Wow...I was not expecting feedback...This is very surprising, but a pleasant surprise. Thank you all very much for all of your replies. They mean quite a lot to me right now :') I want to reply to each of you specifically so I will do so here and also I would like to send each of you a message perhaps...if that is not too awkward for me to do...

Patsy- I am very pleased to meet you too. Thank you for the reply, it makes me less apprehensive. I will try to keep active here.

Baryl Park- I will try to not feel stupid for asking questions I think might be obvious to others who know more about things due to their experience. Thank you for the confidence boost

Ludmilla Souza Viana- Hi Ludmilla. Is it okay to call you by that name? I just turned 24 this past September, so we are close in age also ^-^ I bet it is so beautiful where you live. Lots of scenery to help you relax I hope?

My doctor has informed me and given me some referrals to Physical therapy specialists that I should meet with to help sharpen and strengthen my motor skills as things progress. I enjoy yoga and pilates too...I love to stretch and work on breathing techniques (which helps me with other issues I have).

I think it would be nice to chat also. Sure I would like your email if that is still okay :)

Thank you very much for the kind reply.

Cicina - Thank you for the welcome Cicina. Best wishes to you as well!

dlc - I have already found a lot of supportive people and replies that I was *NOT* expecting. It is a very nice feeling to be welcomed. I don't like to come out of my shell with personal matter, or sicknesses, or actually any problem I have so this is just another issue I have to get over and this is helping me to do that. Thank you for the vote of confidence to go back to school. I plan on doing so and am pretty excited to start :)

Judita - Yes, I have been told that exercise and proper nutrition can help slow the progression and I do hope I will be positive enough to keep at that for my own benefit. :) I do enjoy a variety of exercises so I think that won't be difficult to keep up with. Thank you for the reply Judita.

Jonas Cepkauskas - Thank you for being understanding of what I mean Jonas. I will definitely check out those sites more in depth. Thank you very much!

Jeannie Ball - Wow, thank you for such an welcoming reply. I will take in account of everything you have said. I am just starting out trying to deal with everything and I think hearing of other people's experiences and thoughts/concerns will really help me try and deal with my own and figure out what is good/best for me. I appreciate it so much Jeannie. I hope to be able to be as open as I should in order to help myself through future issues I have with this.You are so very nice to a stranger like me...thank you.

Rojo - I currently am apart of a therapy group but for another mental ailment of mine. I already have difficulty committing to going to that one, so for now I feel a support group online is the best for me right now, but I will consider reaching out to people in my community that may also have this. I believe that will be more likely once I start routine physical therapy?

Thank you much for the reply.

Everyone...thank you so much...I'm not used to so much support other than from my grandmother. I don't usually do well with people because I keep to myself a lot, but you all have really made me feel a lot more at ease with being a part of this site.

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Be encouraged and know that we are here for you. Also, PT will help a lot and exercise (which I am slow to start) but it will help with balance. Good that you are concentrating on going back to school it will help keep your mind off your illness.

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I felt the same way. I’ve been denying I have sca 2 for ten years. I finally joined the site this past summer and it’s been a huge help. I’m ok with it and hearing everyone’s experiences makes it better for me. I finally don’t feel alone. I’ve only opened up about having this to 6 people in the past 10 years. I feel so much better now that my secrete is out in the open even though no one knows me. I hope this site will be helpful to you too!

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Milk Tea (Crystal)

I understand your feelings, it is difficult to accept your senses are declining and there is no real help, you just have to accept each day and pray for some breakthrough finding help.

People ask me how I feel and I feel great except I have difficulty dommunicating and walking. I'm older and have had this Ataxia coming on for 3 years now,so I don't know if my symtoms are from age or Ataxia.

Keep the faith and keep asking questions, you will probably learn more about Ataxia here than from you doctor.

Ray

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Online support groups rock, but allow more emotional distancing than live support groups. I suggest making the effort to do both whenever possible.

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Where do you live and how old are you ??

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Dear Milk Tea, Allow me to add a HUGE welcome to you! This is a great site with wonderful people that can offer support and understanding! I was diagnosed with ataxia eleven years ago, and it’s progressed, albeit slowly! As other’s have said, exercise and a healthy diet are so important! I’m much older than you (60 years young…,ha!), retired, but admire your will to go back to school! You can do it, as we will cheer you on! You are not alone in your jour ataxia journey! Hugs to you…, ;o)

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That is what I am hoping for too when it comes to going back to school :)

Mel said:

Be encouraged and know that we are here for you. Also, PT will help a lot and exercise (which I am slow to start) but it will help with balance. Good that you are concentrating on going back to school it will help keep your mind off your illness.

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I live in Virginia and I'm 24

Irene said:

Where do you live and how old are you ??