Ataxia Cro

Hi! My name is Bozena, 33.years, I am from Croatia... so I apologize for bad engkish because it's not my home language :)

I have ataxia for 2 years now, but they don't know if it is cereberall or spinocereberall!!! They only know it's rare and I don't know nobody who has it and ther's no support group... So all information I have is from Internet sites, and I can say I know more then my dr.

I exercize daly, I go to phisicall therapy often (excersize by Bobath). My speach is better (I have a little doughter :)), but my walking is clumsy.

I have so many question and noone to talk them about but I think in spit off all, I am doing fine. My houseband and my whole family is very supporting

So, is here anybody from my country or nearby?

In this 2 yrs I've understand that ataxia is about eathing helty, exercize daly nd stay positive :)

27 Replies

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  • Hi Bozenia, I am not from Croatia but hear it is a beautiful place. Keep doing what your doing and stay busy even on the bad days. Ataxia gets worse when your not active. I have not yet been diagnosed but your symptoms are similar to mine. English Dr's are no better than yours they don't have a clue. This site helped me more than any Dr. Understanding comes from insight so be strong and hopefully more help will come your way. πŸ˜€

  • Hi Ataxia Cro. Pleased to meet you. This is such a helpful group. Keep in touch.

  • Hi Brozenia,

    i am in a very similar situation to you regarding diagnosis and, as a retired English teacher, I must say that your English is very good! As a grandmother, I am sometimes frustrated by the limitations which my poor balance has on my lifting and taking sole charge of my young grandson but I am still able to play with him and do a lot, just as you will be doing with your daughter.

    I have found doctors to be very helpful, but this condition is rare and diagnosis takes a long time. In the meantime, you are doing all the right things with your exercise programme. I do heel-toe exercises and ballet exercises for core strength every day. I have been helped by my physiotherapist and one of my daughters who trained as a dancer.

    I really admire your determination and focus, Brozenia. Good luck.

    Margaret

  • Hi!

    I was a teacher too - I studyed religion and my houseband is teacher too - history ;) and here without knowing at least one forgen language you are "nothing", and in our school english or german are "must study" ;)

    My sister is a therapyst (she is Bobath therapyst so she helps me in a lot).

  • ho ataxia cro i have my ataxia after having a major stroke in 2012 it took me 3 yrs to get any help o find my ataxia is worse when i am tired so its a case of exercise and rest, keep on this group you will always get an answer to any questions xx

  • I completely agree. As I get more tired, ataxia symptoms become more apparent.

    But not being active enough also seems to accelerate the deterioration.

    It's a fine line between being too active, and not being active enough.

  • hi Iain i agree my problem is i cannot walk so struggle to do much i manage to get round the house but cannot walk outside i have a few exercices i can do whic help but my balance has shot it i can no longer right my speech is awful and swallowing gets really hard by evening

  • Hi Brozena I,m steve. I have always been told that exercise, healthy eating and no alcohol are good things. What Vion said hit the nail on the head. I wish you and your family all the very best. If you are stuck for someone to talk too, this website is the perfect place.

  • Can you walk by yourself?

  • Hi!

    For outside I use rollator or a stick (if I am alone) but in the house I try to walk by myself (and I try to use hands as much as I can).

  • Thank you!! I am going to try to get started at a rehab and read things by y the Dr. Clouse. I will try to start walking. But I cannot take any more falls. I really want to dance with my husband.

  • I will look for the rollator.

  • It's a great thing! It's simmilar like shoppig whealchair but smaller ;)

    I hope in you're falls you didn't broke anything :) (I felt once and hurt my lips and chin...). I am fast by hands so I never felt badly...

    I hope u will dance :)

  • I will see a neurologist soon for spinal MRI. Rebound neurologist for MSS. He will review spinal MRI. Will let you know outcome.

  • That is for Dec.4 Next two weeks.

  • My said that I dont have to go on MRI this year... I took it in january and it was a bit better then first one.

    what kind of diagnostic procedure is MSS? what does it means?

  • Hi Bozeman and welcome! Everyone here is supportive, practical and fun, depending on the circumstances! I love it πŸ’—πŸ’™πŸ’“πŸ˜πŸ˜

    And your English is 100% better than my Croatian!! πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

  • Hi Bozena 😊

    I do not know if there is anybody else from Croatia on this site.

    You could also try livingwithataxia.org I do know there are members from many counties.

    There are also other online support groups on Facebook.

    Even here we find that doing research ourselves can be the most useful 😊

    For information see :

    ataxia.org.uk

    ataxia.org the National Ataxia Foundation (U.S.)

    Keep exercising but remember to rest too😊xB

  • Hi Bozena,

    As all of the others have said, ataxia is such a rare condition that doctors here are limited in their knowledge too. The people who have the most practical information, and who have the most desire to learn more - are us sufferers.

    Medically, doctors are learning more all of the time. But it is the people here who know exactly how ataxia can affect your daily life, and give the best practical advice. And they are a very friendly group of people.

    And don't even worry for a second about your language skills. Better than most here probably.

    Stay positive.

    Iain :)

  • Hello again Bozena - a very good source of information is the blog by a member here called nigelrheath. Although the blog is written in English, use Google Translate to read it in Croatian:

    translate.google.com/transl...

  • Oops! That link didn't work. The blog is at:

    ataxiafightback.wordpress.com

    Just put that link into Google Translate.

    Iain :)

  • Hi!

    Thank you. Sometimes I use translator but more often I understand all that's written ;)

  • hello Bozena

    Croatia is on my list of places I want to visit, it looks beautiful especially the islands and Dubrovnic really interesting!

    As others have said doctors here can also be no better than in Croatia, but we do have the benefit of some excellent neurologists who are experts in ataxia, and the 4 ataxia centres we have too - although it is a developing area of medicine.

    I would recommend that you read some of the papers which are the work of Professor Marios Hadjivassiliou in Sheffield UK - these are academic but will help you to understand ataxia more I think.

    I would recommend that you have testing for gluten antibodies etc as this is one cause of ataxia that is reversible on a gluten free diet - if you cant get tested then please do try a real gluten free diet as I have gluten ataxia and going gluten free has helped me so much, my brain MRI scans are also showing a physical improvement, so it really does work but obviously only if you have a sensitivity to gluten - but very well worth a try if you cant get the blood tests to find out if this is the case.

    best wishes

    Gill

  • Hi there!

    There is nothing that I can add that hasn't been said already! There are lot's of good groups on Facebook that are really supportive too so search around.

    You sound like you're doing everything that you should be! You just have to find that balance between enough and too much!

    Your always guaranteed a warm welcome here, no matter where you are from! (And I hear that Croatia is a beautiful place!)

  • Dear Bozena, Although I'm not from Croatia (I live in the US, in the State of Michigan), we do have something in common (as well as everyone on this site)...,ataxia! Also, your English is VERY good! Ataxia is extremely frustating and challenging! You sound like you're doing all the right things and a positive attitude is SO important with this! If There's a "Living With Ataxia" site here in the US that you may find helpful also! Being on these site's helps me fell less "alone" with this! My best to you...,;o)

  • Welcome to the site!

    If we can be of help, we will!

    I have a wide rollator which is excellent for walking. If you want to know more, just ask amd i can give you details of it.

  • Dear Bozena,

    Excellent advice was given here. Sorry my input is so late. I think the combination of exercise and rest is impt, (at least for me). I am not Croatian but I have a friend from Slovenia, who had been very helpful. Her father has Alzheimer's and from what she says he gets very good medical care in his hometown. So it would seem that Balkan drs., know their stuff. Feel good N

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