It is so hard to see me in photos doing physical things. It is so sad to see this. I just saw a photo of me on Facebook looking as normal as ever. It shows you how much this sucks.
Don't know what to say Butterfly, but I had to let you know that for what its worth, I am thinking of you and please keep going. I don't say much on this forum anymore because even though Cassie has ataxia, I really don't know how you all feel
but I think about what you are all trying to cope with.
I’ve almost lost the ability to think back, sometimes it’s a real struggle.
At the moment I yearn for the days when I was a lot slimmer 
This was prior to being diagnosed and prior to the menopause.
Not being in control is a big issue, it can really hold you back.
Most days are ok but sometimes this sneaks up on you and the
inclination to dwell on the past is overwhelming.
Yesterday was one of those days when brain fog took over, I was
there physically but where was I mentally…
I started having a conversation with my husband, as my attention
focused on a point of discussion which I had strong feelings about,
suddenly my head cleared and I was able to put forward a valid
argument. I was stunned but not lost for words xB
I often look back because I was very active, now I do less so as I have accepted that some of my physical decline is down to ageing. From looking at some of the posts on this formun I get a real sense that people are making the most of what they have. I am still forunate to work in the NHS and I see individuals in their 30s 40s, neglecting their health and I must say a lot are probably worse off physically than those with ataxia. Horrible to say but I feel proud about myself knowing I have looked after myself others should too.
Morning butterflyflyaway, sorry you are feeling down regarding your progress.
It sounds like you might need more personal support to help. If there is a church or parents group around so someone could pick you up and get you out having a little fun. See a movie, cards, hobby or just get together to talk. Best wishes thinking of you. jaime
I get down too so don’t feel alone. I just try to look forward n try not to think too hard on what I can no longer do but what I still can do n that helps some. It is ok to feel loss but try to focus on the can n not the can’t and that helps some. Find something u enjoy doing. My little grandsons are what helps pick me up n a hobby that I like. I am struggling with the prospect of using a rollator which has been a bummer to me. I am still protesting it but I know I should use it more because it makes me feel safer. I keep telling myself that giving up is not an option. Hang in there n know u r not alone.
You still are normal "a new normal", it's okay to think back to what you use to look like or do, just do not dwell on it. This is new for a lot of us and we are learning to adjust each and every day. I take one day at a time and think GOD I am still here trying to make the best of this terribly situation. I like reading so try to find something you like doing and remember we are here for you.
I too, recently was looking back at old photos especially my retirement party at work five years ago and I said to my self, "Wow, what happened to me and my siblings? I didn't feel down or depressed, just in disbelieve. I'm 62 years old and holding my own.
Ditto to all. I am holding my head high, using my rollator since I don’t want to fall, and still working! That took alot oit of me but still trying to live the dream man. What else can we do. I do have my down times but once i got it in my head that “it is what it is” i moved forward!
Hi Butterflyflyaway. I was reading your profile and it was asthough you were mirroring my answers!
Please may i be your friend on facebook?
I am 46 years old and was diagnosed 2 years ago and am also not coping well. It would be good to speak with someone who understands. Thanks
Yo butterfly,looking back at photos now would be the same as looking back before Ataxia.now is new part of time to learn again as a baby would. Acceptance and adaptability instead of just sitting,I keep trying and do so much now with accidents lol but then everyone has accidents,ours are more expected.
I know your frustrated but you have second chance in a way.keep strong if you can.
Hi all
Have just got back from my local support group. When I first went about 6 years ago when i wwas first diagnosed I was still driving,walking,talking ,teaching and plaaying the violin and viola. I felt sorry for everyone in a wheelchair.. Now 6 years later am the worst while everybody else has stayeed the same. I am hauntedd by the past. I think it iss inevitable to think of the loss of past skills if you aare suffering multiple losses daily.I am only just 54 and wish there was a way out of this indinity but I am going to plough on.
Dear Butterflyflyaway, I know exactly how you feel, as before I was diagnosed eleven years ago, I was very active and athletic! I try not to think about those days, as it makes me feel so sad also. I'm 60 years young now, and my ataxia has progressed! It's difficult not to be "in-control" of that, no matter how I try. I can only hope exercise for strength and balance has kept progression somewhat at bay, as I'll never give up or give in (I'm stubborn that way...,ha!). Live for today, as we don't know what the future holds and be ever so thankful for one's blessings! ;o)
Wow. Butterfly, your post has deeply moved me.
I was diagnosed with Friedreich's Ataxia at 6, was in a wheelchair by 12, and am now 32. So, although I do not have an extensive library of photographic proof of a 'norm.al' physical existence, I had to realised, and rather rapidly, that it is not worth tormenting yourself by focusing on who you were and what you could do, but rather too think of the future possibilities and live In the present.
I have still been to university, have published an
Butterfly, it is sad to look back, and hard to take when one realizes what they can't do any more. My kids have been here painting for us and I keep thinking I could help by doing this or that...finally realize I can't help at all. It is hard to sit back and let others do. I even tried to help my grandson move things to make room in fridge and my granddaughter had to clean up the mess where I spilled a bowl. Just have to learn to be happy doing the less physical tasks. I tried to find some computer things and crochet to do when this first came on, now I really don't have time in the day to get all that done, but still miss the cooking and being involved with the physical things going on around me.
Guess there is something to the adage that you don't miss what you never had. We just have to go on with things as they are now and make the best of it.
Hi Butterfly
It is hard to see old photos of myself doing things more physical. I just can't do those sort things like I used to and it's not because of my age either. I have something called Spinal Cerebellar Ataxia type 8. 20 years ago I used to do weight training but even though I might have the strength, I just don't have the stamina anymore or the balance. I have never been a good driver thus I've always used public transport. Now if a bus passes me, where once I used to run for it now I just let them pass and wait 'til the next one comes. I just use a cane indoors and out but it really gets to me that I really can't walk without one now. What I got is hereditary but thankfully it never effected me until my mid-forties. The Doctors tell me there's not much that can be done, just delay using aids as much as possible because it's a case of 'use it or lose it'. I find that's about right. Keep in as positive a frame of mind as possible and hoping you don't always find life sucks.
I like that "use it or lose it", just a reminder how important it is to exercise,
Charlie Sutherland said:
Hi Butterfly
It is hard to see old photos of myself doing things more physical. I just can't do those sort things like I used to and it's not because of my age either. I have something called Spinal Cerebellar Ataxia type 8. 20 years ago I used to do weight training but even though I might have the strength, I just don't have the stamina anymore or the balance. I have never been a good driver thus I've always used public transport. Now if a bus passes me, where once I used to run for it now I just let them pass and wait 'til the next one comes. I just use a cane indoors and out but it really gets to me that I really can't walk without one now. What I got is hereditary but thankfully it never effected me until my mid-forties. The Doctors tell me there's not much that can be done, just delay using aids as much as possible because it's a case of 'use it or lose it'. I find that's about right. Keep in as positive a frame of mind as possible and hoping you don't always find life sucks.
Seeing old photos of me and what I used to do makes me nostalgic plus, depending on how old they are, they might help me jog my memory. Sometimes it helps; sometimes it’s just frustrating if I don’t remember it.
I, too, am in disbelief, and I try to focus on all of the things that I had a chance to do and that I can still remember - most of it, anyway.
I’ve had some time to let this digest, though; at the beginning of this journey and my change in circumstances, which was abrupt, I was VERY sensitive to my change in my abilities.
I try to focus on what I can still do, what I enjoy doing, and what I can build on to my previous experience and situation in order to shape and to live my “new normal”. I also remind myself every morning that I have a choice as to how I want to look at my change - knowing that there’s an option, taught me to look at it differently, and makes it an easier pill to swallow. Setting and having a new goal(s) that’s authentic to my gut and my soul helps, too.
Forgive my incomplete message last night, below is the complete version of my message.
I Anthony Thomas Davies said:
Wow. Butterfly, your post has deeply moved me.
I was diagnosed with Friedreich's Ataxia at 6, was in a wheelchair by 12, and am now 32. So, although I do not have an extensive library of photographic proof of a 'norm.al' physical existence, I had to realised, and rather rapidly, that it is not worth tormenting yourself by focusing on who you were and what you could do, but rather too think of the future possibilities and live In the present.
I have still been to university, have published an eBook, moved into my own flat, founded a charity (click here to visit facebook group), and am 1 of the nude models in a 2015 nude calendar.
A positive POV is the best way too look on life.
Mr May
Keeping Positive
http://www.bbc.co.uk/wales/arts/yourvideo/media/pages/alan_thomas_01.shtml
A BBC TV broadcast for International Ataxia Awareness Day, 2006