I've been inspired by the many posts I've read about people dealing with and overcoming the hardships they face. It is truly amazing.
I thought I'd share a bit about myself. I am a 21 (verging on 22) year old female with FA; currently studying by correspondence and working full time.
I was diagnosed in 2006 with FA after being admitted to a nearby children's hospital with hand tremors. My parents thought it was a simple matter of too much ventolin (having had particularly bad childhood asthma) and naturally were devastated and confused as they had never heard of this disease before and no one in their family, to their knowledge, has it. As for myself, I has informed by the paediatric neurologist who took my case that I would be wheelchair-bound by my early 20s (dear doctors: for future reference - not a good idea) and, frankly, this was all I understood and/or heard.
I had never really been sporty and didn't really like it as I thought I was just very clumsy and not cut out for it.
After my diagnosis I spiraled for several years,completely out of control, hated everyone and everything etc.; teenage angst - magnified. In the middle of all that mess, however, I met my (now) husband.
Education-wise, i completed my HSC with (surprisingly) good marks and entered uni immediately which, in hindsight, was not the greatest idea. I chose Radiography because it was the closest to option medicine which my father wanted we to do. I was discouraged from doing medicine due to the application process and their questions regarding health. Feeling I'd be more of a liability than anything else, I didn't apply and went from Radiography. Stayed in there 2 years before realising it wasn't right for me I figured out that my passion was for Architecture and applied for a transfer. Struggled with Architecture for a year before I got suspended on the basis of non-attendance. Having tried for that duration to deal with the disability services at that university for that duration they were extremely unhelpful and refused to help me as I had trouble getting to my classes, concluding that Architecture wasn't "right for me" and that I should "consider another course better suited to my abilities". Needless to say, this stung.
I got married recently and in a rush due to my desperation to walk myself down to aisle and I didn't really do that too well. In general I find my health declining quicker than I would like and am struggling with that emotionally as well. I find that there is no-one who I can speak to about this and becoming extremely depressed as a result. Frankly, at this point in my life, I don't really know what to do.
Thank you for sharing that with all of us. I can totally relate to that whole " not being cut out for sports cause you're clumsy". I was the same way and I couldn't understand it. Now, I do. You're going to find a lot of support and help on this site so ask any questions that pop in your head. ( btw, which Uni did you go to ? My daughter lives in the UK now and is going to Kent at Canterbury . I'm assuming you're in the UK because yall are the only ones I've heard call it Uni LOL )
As we say in the States dont feel like the lone ranger. I believe i have had ataxia most of my life. I was forntunate for it to show it's ugly head when I turned 57.You need to come to a stop in your life or at least slow down and see what you can do. I was a police lecture and traveled the US doing seminars. I worked in every imaginable part of law enforcement. I am not able to continue that. So, I am writing and researching case law. I have time for me and my family. I dont know where this will take me but,I have turned it around into a good thing.
Hi Serenity, You've come to come to a good place for advice, support and friendship! Ataxia is extremely frustrating and challenging, physically and emotionally. I don't have to tell you that, as you already know! I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause). It affects my gait/balance, dexterity, speech and swallowing. I think it started well before I was diagnosed, as I recall incidences where things were "off". Lose of control has been the hardest, therefore, I try to think positively, as my attitude is the only thing I can control...,ha! I also find exercises for strength and balance and eating as healthy as possible help my ataxia. I saw my neuro recently, and he said to stay as active, safely, as possible. He also said there's been successful studies done (on rodents) that show the brain can make new neural pathways with exercises. The key is to do them CONTINUOUSLY for an hour each day and continue challenging yourself. For example, I do a balance exercise where I stand on one foot for as many seconds as I can, and then the other (without holding on). I do this at a ledge between my family room and kitchen in case I lose my balance, and have too grab on. I keep trying to increase the length of time, Hence the challenging part. If you Google "exercises for strength and balance" you'll find a lot of info. Also the National Ataxia Foundation (NAF) has "free" exercise sheets they'll send you, as well as other ''free" sheets. Go on their site to order (they also have loads of other info). I also bought a book online called "The Balance Manual" ($19.99), written by a physical therapist, who continues to send me "free" easy to do exercise videos online. Also, if you feel you are depressed, see a doctor. I take a antidepressant. It's not a "happy pill" just takes the edge off as ataxia is a lot to deal with! One of my favorite sayings is: "I may have ataxia, but ataxia doesn't have me...,ha! I will never give up or give in, although it's HARD!!! So sorry to go on and on, just trying to be helpful. Best wishes..., ;o)
Hi, thanks for sharing your story. My advice is to concentrate on the positive aspects of your life. Ataxia gives all an uncertain future but try to keep in mind you will find a way to cope. I was diagnosed with FA at 11, now I'm 27 and have spent the last 6 years working and living on my own in London. Over the years I have had to deal with my mobility reducing and the various impacts (organising care, social services, etc ). I take confidence that I will cope with whatever happens because I have to, to keep the positives in my life.
Yes I did know that !!! As soon as Brie moved to the UK and we figured out what Uni she wanted to go to, I did all sorts of research on the area and that was the very first thing I read about it! She's just moved from Maidstone ( she was commuting to Uni ) and they bought their first place in Favorsham so she's enjoying not having such a long train ride.
Folky said:
hi kat,its interesting to hear that your daughter lives in Canterbury,kent.i used to live in kent.only 15miles from Canterbury.i lived with mum,until she passed away in 2006.i still have family in kent though.brother and sister.did you know that kent is called the "garden of England".its because of all the apple orchards and fruit that is grown there..........folky.......
Kat said:
Thank you for sharing that with all of us. I can totally relate to that whole " not being cut out for sports cause you're clumsy". I was the same way and I couldn't understand it. Now, I do. You're going to find a lot of support and help on this site so ask any questions that pop in your head. ( btw, which Uni did you go to ? My daughter lives in the UK now and is going to Kent at Canterbury . I'm assuming you're in the UK because yall are the only ones I've heard call it Uni LOL )
Hopefully studying by correspondence will work out better for you than an inflexible on-campus system. I'm in Australia too (Melb) - and am starting an on-campus course in a few weeks. I'm not sure how I'll go - but I only work part time which is a help. Sounds like you've had a schedule that anybody would find taxing, (organising a wedding, plus study, full-time work etc.). Is there any way you can cut down a bit in some area and give yourself a break?
I struggled with going part time as I was the main wage earner in the family (only did it at my partner's insistence). It has really helped me get through a week though having an extra day to just crash out and rest.
Yeah, that seems to be a common thing the more I read people's stories...just thinking we're not cut out for sport that is.
I'm actually in Australia, a Sydneysider lol we call it uni too. :)
S
Kat said:
Thank you for sharing that with all of us. I can totally relate to that whole " not being cut out for sports cause you're clumsy". I was the same way and I couldn't understand it. Now, I do. You're going to find a lot of support and help on this site so ask any questions that pop in your head. ( btw, which Uni did you go to ? My daughter lives in the UK now and is going to Kent at Canterbury . I'm assuming you're in the UK because yall are the only ones I've heard call it Uni LOL )
Unfortunately no such luck. No chance to slow down really, and you're right it is very taxing.
I advise with on-campus study keep on their backs, because they have thousands of students going through, it's very easy to slip between the cracks and frankly they don't particularly care. I found it a terrible environment, but you might have better luck than me!
S
Jean Grey said:
Hi Serenity,
Hopefully studying by correspondence will work out better for you than an inflexible on-campus system. I'm in Australia too (Melb) - and am starting an on-campus course in a few weeks. I'm not sure how I'll go - but I only work part time which is a help. Sounds like you've had a schedule that anybody would find taxing, (organising a wedding, plus study, full-time work etc.). Is there any way you can cut down a bit in some area and give yourself a break?
I struggled with going part time as I was the main wage earner in the family (only did it at my partner's insistence). It has really helped me get through a week though having an extra day to just crash out and rest.
hi jean, well you are the first person that I have come across who has ataxia, and lives in australia. I have a son 38 not married, no children and has ataxia , his father has it also, although I am not married to him now. my son finds it very frustrating, he goes for jobs and when he begins to speak, well the interview is basically over, and then with his walking and balance being all over the place he looks as though he is drunk. My heart goes out to him and all with this condition, at the moment he has not excepted his condition, has become very depressed and thrown the towel in on life. Relationships just dont happen, and he regrets that he will never have children, as he said that he wouldnt want to pass this condition on to a child. I support him and be there to listen to him, be I cant truly understand the enormous struggle, fatigue, depression and isolation he feels. He does have some good friends, but has had some bad experiences with people in the same company as his mates. This just compounds his f
Jean Grey said:
Hi Serenity,
Hopefully studying by correspondence will work out better for you than an inflexible on-campus system. I'm in Australia too (Melb) - and am starting an on-campus course in a few weeks. I'm not sure how I'll go - but I only work part time which is a help. Sounds like you've had a schedule that anybody would find taxing, (organising a wedding, plus study, full-time work etc.). Is there any way you can cut down a bit in some area and give yourself a break?
I struggled with going part time as I was the main wage earner in the family (only did it at my partner's insistence). It has really helped me get through a week though having an extra day to just crash out and rest.
Thank you for sharing that...wow some parts sound so familiar. You are inspired by the stories of others and an inspiration at the same time. I was never sporty either and felt clumsy. I was very fit and active. This is likely why my diagnosis was delayed.....I was compensating to a large degree. I was diagnosed after uni. I had obtained my degree and after entering my professional career. I am not sure I could have responded as well as you seem to have at that age.
Keep strong. We can achieve much more than we give ourselves credit for. People with disabilities have rights and opportunities that we do not think about. Look at Hawking. I'm sure there were more that a few disbelievers in him.
hi thank you for your reply, as I said I am the mother of a son 38yrs with this condition, it is such a shame that there isnt any support groups in australia where people with this condition can go and support each other face to face kathleen
You are not the only one Serenity. My story is probably the worst you would probably hear. I am a graduate, and also a qualified nutritionist. I had to stop working because of my ataxia. I live alone and I am now facing homelessness. My only way of coping is thinking: there are things we can't change in life; worrying will make things worst; live every minute the best we can. Take care.
Thank you for sharing your story with us. So many of us can relate to what your going thru. I think having ataxia we all deal with some sort of depression.
What helps me is having Quiet time every morning.In my quiet time I meditate on something good and my higher power. Getting up early on a regular basis (never liked doing that before, but got myself into a habit) reading positive devotionals (one paragraph for 365 of the year). Making a list of 3 gratefuls everyday (even when I don't feel grateful, doing this is making me look for even little things to be grateful about so I have things I can write down).
The biggest thing that really helps me is thinking about what I can do that will help someone elce each day. By doing that my thoughts are not on my situation or me. Thinking about others gets me to be more creative with my thoughts. Try it, they help me maybe they can help you too! 0
When I talked to my doctor about the depression that accompanies ataxia she suggested that I do something to help someone else to avoid depression (+exercise) before we resorted to medication. So far, my crochet projects which are mostly for others plus taking on the volunteer job of teaching on line for the World English Institute have occupied my mind and hands so I can stay "sane". It does help to think of others.
Jeannie Ball said:
Thank you for sharing your story with us. So many of us can relate to what your going thru. I think having ataxia we all deal with some sort of depression.
What helps me is having Quiet time every morning.In my quiet time I meditate on something good and my higher power. Getting up early on a regular basis (never liked doing that before, but got myself into a habit) reading positive devotionals (one paragraph for 365 of the year). Making a list of 3 gratefuls everyday (even when I don't feel grateful, doing this is making me look for even little things to be grateful about so I have things I can write down).
The biggest thing that really helps me is thinking about what I can do that will help someone elce each day. By doing that my thoughts are not on my situation or me. Thinking about others gets me to be more creative with my thoughts. Try it, they help me maybe they can help you too! 0
I think the 'doing things online' is good advice - I crochet items to sell on eBay for Ataxia UK fundraising and participate in ataxia forums.
However actually leaving the building to 'help others' is very difficult . I do run local Ataxia UK support group which is great for my confidence but I can imagine if you have clinical depression, it must be almost impossible get yourself going.
Sometimes I get dressed ready to go out but cant bring myself to open the door - I take my coat off again and make my excuses.
Now we live in a retirement apartment and my husband is here much more, I dont struggle so much but I do sympathize very much with younger people.
I do wii fit exercises on my own each morning but we do have a keep fit group here on Wednesday evening. I have two dining chairs for support [like parallel bars LOL] and the rest of the group encourage me. We also have tai chi returning here in March which will be nice.