I cant accept I have an Ataxia even though I act and say I do... its hard staying strong... please help me!
Hi Cynthia - I congratulate you on addressing this and on joining the group on this site. They say that awareness and/or even questioning our changes is half of the battle. Have you considered or are you seeing someone professionally? Talking it out to an expert might help a bunch.
Thank you for being there for me! Im afraid of going to a pro becuse Ive always been the strong person for everyone, but Im a human and I need to talk it off but no one seems to care...
Glitter on Butterflies said:
Hi Cynthia - I congratulate you on addressing this and on joining the group on this site. They say that awareness and/or even questioning our changes is half of the battle. Have you considered or are you seeing someone professionally? Talking it out to an expert might help a bunch.
Hi Cynthia, I was diagnosed having ataxia in 2006. I freaked out for a while also. That's normal thing that I think we all do at first. I mourned my life and how I knew it to always be, so because of the unknown that's bothered me. Plus the fact that no one seemed to understand about it. Not even most of the Dr's.
So I found that I really had a choice to make. Weather I let the ataxia ruin my life or just realize it was a new chapter. I chose to gather as much information to help myself as I could possibly get on the internet, through books, meeting and talking with other's that also had ataxia at meetings to add more information. Also on social media like LWA, + AAN.
I got some good tips on how to manage things and saw somethings (to be honest with you) that made me think there has to be a way around this.
The information I focused on was how I could make my ataxia better. I just couldn't accept hearing from the Dr's that I couldn't do anything about it. In my heart I knew they were wrong. They don't know everything. I mean they are just human also I used to be a hair stylist and I did lot's of Dr's hair so being a hairstylist is like being a bartender, you get to hear allot. Trust me some things you don't want to hear! hahahaha
So I went gluten free at fist then all flours and refined sugars. Then additives etc. Anything I could possibly do to have some control of how I was able to manage this ataxia. So far I've been getting better and better. My cerebellum stoped degenerating with being conscience of the foods that I eat. I use my foods as meds. Most people think because food is easy to get and we do all the time that it can't be a med. Well they are wrong.
Like I keep telling my Nero when he tells me my MRI shows no more degeneration. I keep telling him that it stopped.He told me that a person can't stop the degeneration once it starts. I told him there is always a first time for everything! :0)
Being able to control this ataxia even a little bit like with foods, exercise, mediation etc. (physically, mentally and spiritually) is something that helps me since I have to have this ataxia. Now I really believe I got this ataxia for a reason. And I'm actually choose. I have a mission to do.
Why not since I have to have this right? I never was one before to look for the positive but getting a diagnosis like ataxia can change your life. It changed mine for the better. I sure appreciate little things so much more now. Now I have a gage! :0)
Please message me anytime if you'd like to chat. And please remember that we all get down from time to time. It's how long we want to stay there with it that matter's. It's our right to have choices! :0) :0)
I got a chance to work with this Dr. He also has ataxia himself so he gets what we are all about. There is a lot of information on his website. I follow allot of his thoughts. They help me. Check it out and spend some time clicking around on things. http://walkingwithataxia.com/BASIC%20CONCEPTS.htm
Hello Cynthia....I found it hard also to accept Ataxia but then I discovered a therapy called Logotherapy which was founded by a Dr Viktor Frankl, neurologist, who had been in concentration camps during WWII for three years and lost his family members to the gas chambers. I had an ear for him as he had triumphed over his sufferings and I soon learnt from him that my life can have real meaning and purpose inspite of having ataxia hindrances from the moment I get out of bed. He wrote a little book called Mans Search for Meaning concerning his struggles inside the camps and his ultimate freedom, which can be downloaded free online in epub or pdf format to be read on Tablets, ipads and computers. Accessing this book was a turning point in my life and Dr Frankl through Logotherapy helped me to accept who I am now. I access Logotherapy Online Counselling (free) and find it very helpful for my ongoing life with Ataxia. Just type Logotherapy Online Counselling and register for counselling if you wish. However you could read the life changing little book by Dr Frankl if you wish. He passed away in 1997 but his therapy remains effective to this day....he is my hero. Storm.
Hi Jeanie....thanks for the link to the doctor with ataxia....read with interest....will apply. Where there is life there is hope...if one wants something worthwhile one has to work at it. We are physical...emotional and spiritual.....that is a lot at our disposal don't you think Jeanie....Storm.
Jeannie Ball said:
Hi Cynthia, I was diagnosed having ataxia in 2006. I freaked out for a while also. That's normal thing that I think we all do at first. I mourned my life and how I knew it to always be, so because of the unknown that's bothered me. Plus the fact that no one seemed to understand about it. Not even most of the Dr's.
So I found that I really had a choice to make. Weather I let the ataxia ruin my life or just realize it was a new chapter. I chose to gather as much information to help myself as I could possibly get on the internet, through books, meeting and talking with other's that also had ataxia at meetings to add more information. Also on social media like LWA, + AAN.
I got some good tips on how to manage things and saw somethings (to be honest with you) that made me think there has to be a way around this.
The information I focused on was how I could make my ataxia better. I just couldn't accept hearing from the Dr's that I couldn't do anything about it. In my heart I knew they were wrong. They don't know everything. I mean they are just human also I used to be a hair stylist and I did lot's of Dr's hair so being a hairstylist is like being a bartender, you get to hear allot. Trust me some things you don't want to hear! hahahaha
So I went gluten free at fist then all flours and refined sugars. Then additives etc. Anything I could possibly do to have some control of how I was able to manage this ataxia. So far I've been getting better and better. My cerebellum stoped degenerating with being conscience of the foods that I eat. I use my foods as meds. Most people think because food is easy to get and we do all the time that it can't be a med. Well they are wrong.
Like I keep telling my Nero when he tells me my MRI shows no more degeneration. I keep telling him that it stopped.He told me that a person can't stop the degeneration once it starts. I told him there is always a first time for everything! :0)
Being able to control this ataxia even a little bit like with foods, exercise, mediation etc. (physically, mentally and spiritually) is something that helps me since I have to have this ataxia. Now I really believe I got this ataxia for a reason. And I'm actually choose. I have a mission to do.
Why not since I have to have this right? I never was one before to look for the positive but getting a diagnosis like ataxia can change your life. It changed mine for the better. I sure appreciate little things so much more now. Now I have a gage! :0)
Please message me anytime if you'd like to chat. And please remember that we all get down from time to time. It's how long we want to stay there with it that matter's. It's our right to have choices! :0) :0)
Good Morning Cynthia!
I hope today is a 'good' day for you. It must be very difficult having been always
the strong one, and now having to come to terms with a condition where you are
forced to ask for help yourself.
I can't add anything to the good advice you've already been given. But, I would
urge you to find some way of talking about your concerns, to somebody. Either
a professional, or a self help group. Your privacy would be respected.
It's your turn now to be cared for. xB
Hi Cynthia
I am using a therapist to help me cope with it. It is not easy but not impossible to keep going. wishing you the best.
I am in the same boat.I feel stuck in the middle.I am now 54 but was diagnosed when I was 49.I don't yet feel reaady for nursing homes,bingo etc but I know that mine is a physical disease not an intellectual.The body is worse but the intellect stays the same. I have to wear a bib,drink with a straw,can only talk with difficulty. I feel like a baby stuck inside a youngish and useless body.There is also a big difference between what I could do last year and what I can do now.So many adaptions.
I don't feel ready.It is hard trying to adjust. Don't know where I fit in.
Hi Cynthia, the best thing you could have done is come on here.. as you can see, you will find very inspiring people who have turned their lives around and hopefully will help you feel positive.
When I was diagnosed in my late 50's, I read online about how I would slowly deteriorate just as the neurologist had explained. However, I have increased my understanding of diet and exercise and now at almost 71 years old, my speech is not slurred and I dont need a wheelchair. I appreciate that I am lucky and others have a more aggressive type of ataxia but there is always hope.
I am able to run the local support group and find this is a very useful experience for all concerned.
I look forward to seeing more posts on here from you and hope very much that you will gain confidence. Dont forget to smile.
Patsy CA/70/UK
Cynythia,
Remember a few simple points: Whatever you don't feel like doing, do, instead, like making supper or taking a walk.
Shrinks can be useful although mine is either a genius or a charlatan because he is delving into the past whic I dont think is relevant now. (He disagrees.). As a medical dr. he can and does issue meds to me which are helpful.
Do rest; why not? It's good for your body and your soul and will give you courage to face another day
Reward yourself periodically (often) by going to the beauty parlor or getting a manicure or going out for lunch or tea (even if u go alone.) or getting massages.
Read five newspaper articles aloud each day
I agree; it's depressing havng this but eventually you will forget/file your life before the CA , and this will make it easier.
Neurologists, it seems to me, will never argue with the hard facts of blood work or MRI's For instance, they, it seems, will never recommend change in diet or, say, accupuncture (which I have performed on me nonrtheless) unless a blood test says you are gluten sensitive. But based on the many comments here. you may be helped by a gluten-free diet. Try it for 1 month. I am; even tho my blood tests said I was not gluten sensitive. (A double edged sword because gluten is impt to people who are not senitive to it.)
Don't lose hope. You may (hopefully) live to see a cure. You are not alone--this is truly a curse. I am also in a bad mood most of the time, and very jealous of those who eat like pigs, never exercise, and even smoke! Good luck to you.
My shrink says not to visit this site too much (or ever), or to be in contact with any virtual people. You may "develop' what they have, (I don't necessarily agree.)N
I think your shrink needs to see a shrink Neta
HI CYNTHIA
I AM 62 AND WAS DIAGNOXED WITH ATAxia WHEN IIK WAS 16 SO IN a way ATAXIA IS MY LIFE
IM NOT SAYING IT ISNT HARD TO LIVE WITH IM just saying I learned to live and cope with It. I had to
make A CHOICE TO TAKE CHARGE OF MY LIFE OR LET ATAXIA TAKE CHARGE OF ME. -I MArrIED AT
AGE 30 AND TRaveled a lot dispite my wheelchair and other proBLEMS. SO TAKE CHARGE OF THIS NEW
LIFE ,yOU ARE A STRONG LEADER \YOU SOUND LIKE ONE] YOUWERE THE PROBLEM sOLVER, SO WORK ON YOURSELF , I KNOW YOU CAN DO IT. [AND CRY IT HELPS] THIS SITE IS TOPS, GOOD LUCK YOUR NOT alone
It's funny but not funny. I don't think he's ever encountered ataxia or an ataxic patient before. I wonder if he understands this condition. To take it even further. He says these sites are tantamount to pornography (!!!) because you never see the other person. I obviously don't agree. However I do take his point that there may be times when one can become "influenced" by someone else's experience. Also people can reinvent themselves here and make claims which are not true or accurate. I know that I am me and I trust you are you, but who knows what else is going on??? Some extremely normal people dont quite trust the Internet. I have a friend who told me she has tried to get herself removed from Facebook because, she says, "there are many criminals on it." On the other hand it's hard to believe that anyone would make up having ataxia. Wierd. But who knows for sure??? N
Punk said:
I think your shrink needs to see a shrink Neta
Thank you! Your words really helped me Id love to have you as a friend and being able to help you as well, I feel different now knowing that Im not alone on this... thank you!
Jeannie Ball said:
Hi Cynthia, I was diagnosed having ataxia in 2006. I freaked out for a while also. That's normal thing that I think we all do at first. I mourned my life and how I knew it to always be, so because of the unknown that's bothered me. Plus the fact that no one seemed to understand about it. Not even most of the Dr's.
So I found that I really had a choice to make. Weather I let the ataxia ruin my life or just realize it was a new chapter. I chose to gather as much information to help myself as I could possibly get on the internet, through books, meeting and talking with other's that also had ataxia at meetings to add more information. Also on social media like LWA, + AAN.
I got some good tips on how to manage things and saw somethings (to be honest with you) that made me think there has to be a way around this.
The information I focused on was how I could make my ataxia better. I just couldn't accept hearing from the Dr's that I couldn't do anything about it. In my heart I knew they were wrong. They don't know everything. I mean they are just human also I used to be a hair stylist and I did lot's of Dr's hair so being a hairstylist is like being a bartender, you get to hear allot. Trust me some things you don't want to hear! hahahaha
So I went gluten free at fist then all flours and refined sugars. Then additives etc. Anything I could possibly do to have some control of how I was able to manage this ataxia. So far I've been getting better and better. My cerebellum stoped degenerating with being conscience of the foods that I eat. I use my foods as meds. Most people think because food is easy to get and we do all the time that it can't be a med. Well they are wrong.
Like I keep telling my Nero when he tells me my MRI shows no more degeneration. I keep telling him that it stopped.He told me that a person can't stop the degeneration once it starts. I told him there is always a first time for everything! :0)
Being able to control this ataxia even a little bit like with foods, exercise, mediation etc. (physically, mentally and spiritually) is something that helps me since I have to have this ataxia. Now I really believe I got this ataxia for a reason. And I'm actually choose. I have a mission to do.
Why not since I have to have this right? I never was one before to look for the positive but getting a diagnosis like ataxia can change your life. It changed mine for the better. I sure appreciate little things so much more now. Now I have a gage! :0)
Please message me anytime if you'd like to chat. And please remember that we all get down from time to time. It's how long we want to stay there with it that matter's. It's our right to have choices! :0) :0)
You are living… You have a strong support team you can still see the road ahead and it could be much worse!
It’s easy to wallow in your sadness , but think positively and surround yourself with positive people that helps me… Laugh and try and get some exercise ,… Good luck
I feel so relieved reading those words from you, youre right I cant let Ataxia take charge pf my life, specially if Im the problema solver... Ill work on myself! Youre so inspiring for me, Id love to have you as a friend!
rayjan said:
HI CYNTHIA
I AM 62 AND WAS DIAGNOXED WITH ATAxia WHEN IIK WAS 16 SO IN a way ATAXIA IS MY LIFE
IM NOT SAYING IT ISNT HARD TO LIVE WITH IM just saying I learned to live and cope with It. I had to
make A CHOICE TO TAKE CHARGE OF MY LIFE OR LET ATAXIA TAKE CHARGE OF ME. -I MArrIED AT
AGE 30 AND TRaveled a lot dispite my wheelchair and other proBLEMS. SO TAKE CHARGE OF THIS NEW
LIFE ,yOU ARE A STRONG LEADER \YOU SOUND LIKE ONE] YOUWERE THE PROBLEM sOLVER, SO WORK ON YOURSELF , I KNOW YOU CAN DO IT. [AND CRY IT HELPS] THIS SITE IS TOPS, GOOD LUCK YOUR NOT alone
Sounds good do whatever it takes to request my friendship and I will approve it! I, myself am still learning
How to use this site! Haha