Hi. Im Courtney. Im 26, married for 9 years and have 2 kids, ages 4 and6 .
I came to this site because this condition is driving me crazy. Im unhappy alot, ive been put on prozac to help me get happy again. I feel like since I was diagnosed that my life is over. I cant be like a normal 26 year old. It kills me. I just need someone to talk to that knows what Im going through. I have talked to counselers about this, but they ultimately feeling bad for me. I dont want someone to feel bad, I just want someone to listen to me
Dear Courtney, What type of ataxia have you been diagnosed with. Where are you in the UK or in the US. Tell this site what you are going through, how it makes you feel and what you have been advised to do so far. We are all here to help, and we all know what you are going through, as we are going through it too. Some to not such a great degree, others even worse, but Ataxia is a nasty condition and there are so many types, we need to know what type you have, and have to try and help you cheer up a little although it is so hard. I was only diagnosed about 4 months ago and am still coming to terms with it. I am very unbalanced and have trouble walking also I suffer nerve pains in my legs and have to take a strong drug to counteract them which gives me vertigo, so I am one of the lucky ones. I know there are plenty of people on here who may be able to help you as they have more severe symptoms. Hang in there and don't give up, there is life after ataxia, it just doesn't feel like it at the moment. Take care, and I'm thinking of you Lisa x
Hi Courtney, I'm Jonas. I'm 58, run a non-profit called The Fight Ataxia Project ... http://fightataxia.org ... and run the Chicago ataxia support group ... http://chi-townataxia.org ... 15 members of my family are/were affected. Please visit our websites.
Hi Courtney
Are you in the UK? I have gone through worst in my life. I was put on Prozac and later Citalopram to deal with my stress and depression following my ataxia. I am a Nutritionist and professional Clinical Hypnotherapist. I was working as a therapist for Anxiety UK before my ataxia. Unfortunately my symptoms especially my speech did not allow me to continue. I have developed my own methods to cope with those situations now and I am managing my speech nicely. I am still a Practitioner Member of Anxiety UK. I contacted them recently and I am trying to find out how I can use my experience to continue helping people. I am sure you will feel better soon. If you want to share your problems please don't hesitate to write to me. I would be very happy to guide you in the right direction. Smile
Regards
Deo
Hi Courtney
I know exactly how you feel. I woke up from a coma completely ataxic.
Arms, hands, legs, and speech. So there was no " getting used to the idea little by little " I went from completely fine to completely dependent. Hang on it does get better.
Hi Courtney and welcome! Visit often, just to reading about others is OK but speak out when you feel the need. I am 51 with Cerabellar Ataxia the result of heart surgery that damaged my Cerabellum - the damaged valve was replaced successfully. You WILL have better days as you learn to cope. I would also suggest that your husband visit the site once in a while to help with his understanding.
Courtney you should be happier. you have a husband. Ataxia does suck. But there is nothing we can do about it. Its the cards we were dealt. I know its hard. there is so much that we cant do. Okay think of me. LOL This guy that liked me 40 years ago found me on Facebook. We have been chatting for a week. He thinks he adores me. And wants to meet me. I told him about the ataxia. He says he doesn't care.(thats what they all say) So me with ataxia. at 52. I want to meet with him. All this is very hard for me. Courtney, You have so much. Busy to. Cheer up! Life could be a lot worse. You could be me! lol (Dating)
Hi Courtney, A HUGE welcome to this site! You've certainly come to the right place for support, advice and understanding. There are many wonderful people on this site to talk to. Even though there are many different types and degrees of ataxia, some hereditary, some not, we all share many common symptoms of ataxia. As Lisa1949 asked, what type of ataxia have you been diagnosed with? I was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause). I'm 59 years young...,ha! As a rule, I'm a positive person and have pretty much come to terms of having this, although I do have moments when I feel sad. Ataxia is extremely frustrating and challenging! I have a mini-pity party and then I go on. I try to focus on all I can do, rather than what I can't. I try to count my blessings, as there are many! You're young with two young children (my two are grown now, and I have two young grandchildren). It may feel like your life is over, but it definitely isn't! Vent all you want, as you're not alone in your journey! My best to you...,;o)
Hi Courtney
Welcome to this site.You are very young to get this condition.No wonder you feel disappointed and frustrated and that no one is listening to you.One whiff of depression and the medical fraternity put down everything as stress.
As the others have said "what kind " of Ataxia have you got?? This site is very good for venting as most of us have been there and we pass on tips and ways to cope.I have found the people on here very kind and caring and helpful.
I am very happy for you Lori. Go for it, you have nothing to lose. We have to make the most of what's left of us. Good luck. God Bless.
Lori said:
Courtney you should be happier. you have a husband. Ataxia does suck. But there is nothing we can do about it. Its the cards we were dealt. I know its hard. there is so much that we cant do. Okay think of me. LOL This guy that liked me 40 years ago found me on Facebook. We have been chatting for a week. He thinks he adores me. And wants to meet me. I told him about the ataxia. He says he doesn't care.(thats what they all say) So me with ataxia. at 52. I want to meet with him. All this is very hard for me. Courtney, You have so much. Busy to. Cheer up! Life could be a lot worse. You could be me! lol (Dating)
Im still trying to figure this site out so I apologize if I didnt reply right. I have spinocerebellar degeneration. It is gene related. My grandfather is in an electric wheelchair. My 2 uncles have it and are in wheelchairs. My mother has it but is close to being in a wheelchair.
Hi Again Courtney, There's no right or wrong way to reply on this site! We'll ask questions if need be! Vent and talk about your ataxia and feelings all you want, as we are good listeners! I'm a former social worker (28 years), retired now (seven years) and have a tendency to try and make people feel better...,so sorry! Hugs, Rose ;o)
Welcome to the site Courtney. You'll have alot of support here. My mom and I have Ataxia and our doctor is trying to find out what type it is. You just have to stay positive and take this one day at a time. I'm 53 and married to a wonderful husband and still work and stay very active. I know that someday it could be sooner than I think, I will need a cane or a wheelchair. My balance is still good if I take it slow, but my mom's is bad. I do have problems with small motor movements. It takes forever for me to do my nails and I can't write anymore. But I stay positive and do everything I'm used to doing even before I was diagnosed and so does my mom. Except she does things alot slower now. Yeah it sucks having Ataxia, but try to stay positive and find activities that make you happy. I'm a member of Jonas's group, Chi-town Ataxia. It's a great group. We can help you.
My hubby was 24 when he first started with symptoms but for the past 23 years his condition has progressed really slowly. The worst symptom is the slur of his speech but since I have been with him so long I did not really notice his speech deteriorate and to my mind "he has always been like he is". We have been waiting for children for over 20 years and we are currently at the end of an adoption process but have been put on hold due to them wanting more medical investigations on him. It is due to these investigations he has now obtained his label of "cerebellar ataxia" which they think is genetic. His prognosis is that since it has progressed so slowly for the last 23 years there is no reason to believe it will not be equally as slowly in the years to come but he might need a walking stick in 10 years etc. We still do not know yet if our whole adoption process is going to be stopped now due to this and it has just cost our parents £750 to get him the neurology tests he needed rather than have our adoption process delayed for over 7 months waiting for it all on the NHS. It is rather bizarre to know that he now has a label on him whereas before we just counted it as "just the way he is" and we keep reminding ourselves that he is the same person he has always been but just now he has been "categorized" and knows that his future is uncertain. However, whose future IS certain? None of us know if we have the next moment of breath and can be struck down in an instant with horrible things like cancer etc so whilst hubby lives with the uncertainty of how quickly his cerebellum is going to die off it is not a great deal of difference than living knowing that age brings with it all sorts of ills and aches and limitations anyway. You are blessed to have children, we might be forever denied that chance and it has been our centrality of trying for the last 20 years. You are blessed to have a long solid marriage. I know it does not "help" as such but never-the-less I still try to do it...........look at all the blessings you have in your life and focus your mind on those and by doing so the nasty things no longer get center stage and become dimmer by comparison.
Welcome!! This site is the best. No one knows how we feel accept others who have ataxia. I was about 36-37 when my ataxia showed it’s ugly head. I am glad I was married before it came out, because I do not think I could find a man to deal with the disease. I am 44 now, and I use a walker. My husband is having a terrible time dealing with this. I have a 6 year old girl who is my reason for pushing. She s such a help. She already does so much for me. She does so much for me at home. I don’t know how she can be so loving, but it is wonderful. As for my husband, well, he is a jerk (put every swear word in here). Well, enough about me, but you know how hard it is at times. But, keep your head up. Your kids need you. I don’t think ataxia gets better often. But you can try to deal with all these hardships better. You can do it!!! Come back and visit us soon. It helps to see every post. This site is a lifesaver.
Find a support group if your in Maine try this
Maine Support Group
Kelly Rollins
PO Box 113
Bowdoinham, ME 04008
Hi,
I understand your emotions perfectly. I suffer from similar conditions but my age is 54. My husband is affected with Parkinson’s and we are sailing in troubled waters fighting to keep,us afloat. We force color and happiness in to our lives and have accepted our limitations. Once you learn to accept the rest will,fall in place and you will turn over a new leaf. Hope for the best and keep strong. We may not conquer our ailment but can be un touched ! This is indeed a big achievement for us. Good luck.
Courtney,
Jack suggested attending a support group meeting. I know that I feel less alone after I’ve attended one. Maybe it will help to be around others like yourself, and you could get some good ideas how to cope. Do it for yourself, and it will probably end up helping you children as well!
Kathy
Hi Courtney!
Are you able to talk to the other members of your family who also have
this condition? Although, I know sometimes you just can't unburden
to someone close to you. I can't add anything to the good advice you've
already been offered. Most of us feel or have felt, the same emotions as
you, it is very hard when there is no-one to listen, just putting the pain
into words can give a lot of relief. You obviously need to vent your
frustration, and not up the dosage of Prozac (I take Sertraline).
It's much better just to let it all out on this site, rather than as I did,
let your husband take the strain. It really is ok to discuss/ask
anything that's bothering you, somebody is bound to have come
across something similar, you needn't feel alone with this.
Hi Courtney - Welcome. You have every right to be upset with all of the changes that are happening. Everyone can relate here; if you need anything more, you might consider: http://forum.livingwithataxia.org/forum/topics/crisis-talk-line-for-when-your-overwhelmed