About 1,5 years ago I've been diagnosed with ataxia - probably SCA14. I'm 38 years old now. My major symptoms are fatigue, mild balance issues, mild dysarthria, mild nystagmus, and bad handwriting. Because of the fatigue (in order to have energy for a life after work), I cut down on my working hours.
The other symptoms are relatively mild, though. Most people do not notice them, and with some minor adjustments I can still ride horses, run, and even climbed Mt Kilimanjaro last February. (that last one did cost me a lot of time to recover from but I seem to have this urge to prove myself)
When I read stories from other people with ataxia, I feel very lucky that I can still do such things, but I also feel guilty, that I work less so I can do them. Somebody asked me: "what must people think at your work, she climbs a mountain but cannot even work full hours?"
Does anybody recognize this?
Certainly do.. always feel judged.. especially by inlaws but... can only do our best cant we!!
Were you sponsored for your climb? I was late 50's when my CA was triggered so only had a couple of years before I retired but really sympathise with the problem of not being able to work full time.
Wow!!!! That is wonderful!! Keep doing as much as you can. Even though you get tired, do what makes you happy. Work for as long as you can. It sounds like you have a very understanding employer. I mean, to be able to cut your hours down. I wasn't so lucky. I got fired last year. I thought my boss understood my disease. But he did not understand that it took me longer to walk, and type and I needed help with carrying things. My ataxia came out when I was pregnant (37) I am 43 now and must walk with a cane. Sometimes I use a walker. My symptoms are much like yours. But much worse. I am so happy to hear about your physical goals!!!! Keep it up. Let people judge you if they want to. Just do what you want. I let it bother me sometimes. People say I shouldn't. Easier said than done. I got a shirt that says "I'm not drunk, I have ataxia" lol More people should know more about this disease. Just keep smiling!!!!
Many thanks, to all of you, for your kind words. I will certainly keep in mind to continue chasing my goals, no matter what other people say.
It's hard to understand for some people close to me that sometimes I can put all my energy in a one-off physical event and succeed, but on a daily basis couldn't keep up the 40 hrs a week at work. I learned something about the different kinds of physically being tired and a kind of neurological tiredness, but it's still difficult.
Fortunately, my boss and colleagues are very understanding, and the laws regarding people with disease vs responsability of the employer are strict in the Netherlands.
The physical therapist at the rehabilitation centre I visited for a couple of months last year, gave me enough support to try that mountain in Africa, and I chose a good organisation and hired an extra, personal guide. Couldn't have done it without them! And I'm extremely happy I did.
Hi Cristal, don't worry i get the same. I am tall and look healthy but people don't realise how you can feel in your head and how lethargic you may feel.When you have Ataxia it is important to look after yourself to enable you to have a fulfilling life, if you worked fulltime hours your whole life would only be that cos you would't have the energy for anything else.
Everyone deserves a life, Ataxia can toughen you up and make you think sod what other people think, as long as your family support you and friends, who cares what other judgements people make!
Thanks, Shonnie, for reminding me what matters most! And for not letting me feel alone with this. Most people with ataxia I know, have way more severe problems, and to hear such advice from them, is really great, but it also makes me feel a bit overawed and ashamed to write about my relatively small issues.
Btw, I like your puppy dogs!
I was diagnosed several years ago - my symptoms are similar to yours (fatigue, balance, mild dysarthria,...) - so far, I've been able to stay working (I am an IT consultant), but my walking and speech have gotten worse in the last few months. The people around me are great - they know and are understanding of my condition and any needs I may have. When walking, I know I appear at times like I am drunk, but most of the time I feel that if people want to think that let them. Sometimes it bothers me, but there is nothing that I can do about it - the dog still has to get her walk!
Congratulations on climbing Kilimanjaro! Even without Ataxia, I don't think I could do that!
I can relate there John, mine was a motor bike accident in 2009 where I broke my ankle and ended up in a wheelchair for 6months because I couldn't balance on crutches.
Luckily work still kept me on although I had fears of loosing my job. My folks had to come up and drive me to work and back.
I have since made a full recovery, but still get fears of loosing my job amongst other things - guess that's ataxia for you
Yes indeed, I have my worse falls when I am feeling good.
Of course it's not a good idea to try something really stupid, but I don't want to be afraid all the time. For me, it's probably too easy to judge yet, as I haven't broken more than a finger so far.
But still, I jumped over 3 jumping fences in a row a couple of weeks ago (well, the horse did), and it felt great! I was hugely proud of myself. After the 3rd one I was so off balance though, that I had to let myself fall, but no worries there, just a lot of sand.
On the other hand, when climbing Mt Meru just before the Kili, I decided to turn back because of the exposed rock scrambling in the middle of the night. This was a really dangerous situation. It was a hard decision to make, as the others went on and all made it to the top and back, but somehow I just knew this seriously wasn't for me.
Michael, I think your surfing is a great way to exercise your balance besides being loads of fun! I ride horses for these reasons. Riding the waves, you will less likely have bruises when you lose balance though :-)
I've read these posts here and you all must be newly di.agnosed. This disease progresses slowly, depending on type and if it is hereditary or not will determine how bad it gets. Most ppl I know, including myself who have had symptoms (started very slightly in my 20's) now 12 years after the major symptoms appeared, i am nearly wc bound all the time. when I do walk it is always with someone holding onto me. I can't work, drive or do much without long rest periods in between. So I say enjoy what you can now. live life to the fullest and by all means never let others get to you. They have no idea what you live with everyday. Blessings ALL.
I'm so proud of you !!
I understand how it feels.
When we need support from friends but they don't understand and ask you why this and that, it is frustrated and hurts.
After I tried to do what everyone thinks that is good to me, I start to lose myself and get lost.
then I realized that the center of my life is "me".
I am learning to value myself more - my ideas, my thinking .... 'cos this is my life, I love I am who I am.
Good point John. I took a stab at it on my blog.
John "JC" Colyer said:
The one thing lacking from our amazing support community is the ability to see the different stages of Ataxia we are all going through, we read each others posts but don't visualize or hear each other, but we take what we can get. I might sound like a broken record but in Jan'2010 I fell and broke my left knee cap, it took 6 months and 2 surgeries and alot of physical therapy sessions. During that time I was brought to the darkest place I ever thought someone could go through, it broke me emotionally also. I let my confidence and cockiness let me attempt something I should have known better. When you get confident that is when Ataxia strikes and say's, "REMEMBER ME!!"I'm still here. Its great to challenge yourself but don't risk injury to prove a point. Please try to understand from my mistakes.