Have you face discrimination after diagnosed with ataxia?

General
1

This is a question deep down in my heart.

Unfortunately I got such kind of "friends".

When I was suspected with ataxia, I was shocked and almost collapsed. During the time of waiting genetic test result, I called my friends and shared my feelings, but I never expected that that would be the time they start to distant with me. Soon some disconnected all social connection, some look at me just like looking at a dinosaur who's going to eat them....

I hate this, it hurts badly.

Now I know how to identify good people who really cares of me, they are so valuable.

If you don't mind, please share your story or thinking with me. I appreciate it.

Charmaine

2

Hi Marty,

Thanks a lot for your kind words. It is so encouraging.

I used to have a lot of friends, when I've been sick for other disease for quite a while, the connection is diminishing and finally lost most of them.

Then I asked myself how come it happened in this way and who is my true friend....

When I have learned the difference between true friend and loser, it's also the time to recognize the quality of a true friend.

I hope I can meet some true friends in the future.

Charmaine



Marty said:

hi charmaine,im so sorry to hear that youre so called friends behave in this way.As the saying goes :with friends like this,who needs enemies...pls charmaine,just ignore them.they are not worth the trouble,even worrying about.I dont really have a story to share,as i dont have many friends anyway.but i do sympathise with your problem.and can understand just how it must really hurt.just keep strong and dont let it get u down.rise above it.and yes,when a true friend comes along,it will be better having 1true friend than having a dozen losers......

3

Hi Michael

Thanks for your sharing, I'm trying to think deeper... need some time, and will get back to you.

I'm very happy to realize that I have friends now, very encouraging. Thanks a lot.

Your friend,

Charmaine



Michael Ward said:

Hi Charmine:

I had 100's of friends if not near 1,000.

When I tried to explain to a long time friend about my health he said let's talk about it over lunch.

This was 2 years ago. I haven't see him? Not even a phone call?

You do find yourself more and more withdrawn from social situations.

All you have left is family.

My wife is my closes friend.

I was a popular extroverted socialite.

This has changed.

I have a different path I'm on now.

Everyone has issues so just let them deal with them alone as they let us deal with our issues alone.

Charmine you have new friends now.

We may not be the ones you ask for however we won't miss judge you.

Support and Sharing is why we are here on this site.

Your friend,

michael

4

Hi Charmaine
I agree with Marty with friends like that who needs enemies. On my particular journey, even though my ataxia is congenital ( from birth) no one including me ever looked deeper until I kept falling & breaking bones. Then I had an MRI. So my friends & family were going along the journey with me as it was & is unfolding. They are all still here. Thank God! I will be happy to be your friend on this site. Our me on your list. Kay.

5

Hi Kay

It's so touching to hear your story. Thanks so much for being my friend ^^

I wondered if there are true friends in the world, you have and you are, why don't I believe!

Frankly speaking, love is not a word that I am familiar with since my mother passed away when I was little.

I should not lose hope and faith.

Kay, I'm so happy for you as you have true friends.

Marty, thanks for the reminder, very nice one -- "friends like that who needs enemies".

Charmaine



Kay said:

Hi Charmaine
I agree with Marty with friends like that who needs enemies. On my particular journey, even though my ataxia is congenital ( from birth) no one including me ever looked deeper until I kept falling & breaking bones. Then I had an MRI. So my friends & family were going along the journey with me as it was & is unfolding. They are all still here. Thank God! I will be happy to be your friend on this site. Our me on your list. Kay.
6

Hi Charmaine

I can really relate to you I have had Ataxia for nearly 40 years now and even though I am quite tough skinned there are a few shallow people around. My family often forget that I have difficulties, I have often been left at a bar not able to carry my own drink over to friends. On the whole I think people need educating I have had been overlooked more times than I care to remember in my career and have been to job interviews where it was obivious that they were more interested in what UI couldn't do! I am quite lucky I am confident enough to ask bar staff to change drinks to more appropiate glasses or tell my manager when things get difficult. And as for friends well I just have one good one that's all I need sure it does hurt that Ataxia does affect my life so much but I try to do so much with what I have.

Hope this helps

Sarah

7

Hi Sarah

Thanks very much for your sharing.

It helped me to understand more perspectives about "my issue".

Agreed. There are shallow people around, I should focus myself more.

For true friends, if I'm lucky, I am sure I will meet one or some one day.

I am too frightened of this disease and think that I need friend to support me, but it's not really now.

Even I'm new to this forum and new to this disease, I can learn how to live with it.

Friends here have lived with it for many years and keep doing well, I should start and try.

I know it's not easy, but I'm not alone.

Charmaine

8

Where in the country are you?

Sarah

Charmaine said:

Hi Sarah

Thanks very much for your sharing.

It helped me to understand more perspectives about "my issue".

Agreed. There are shallow people around, I should focus myself more.

For true friends, if I'm lucky, I am sure I will meet one or some one day.

I am too frightened of this disease and think that I need friend to support me, but it's not really now.

Even I'm new to this forum and new to this disease, I can learn how to live with it.

Friends here have lived with it for many years and keep doing well, I should start and try.

I know it's not easy, but I'm not alone.

Charmaine

9

Hi Charmaine

When I was going through my spiritlual crisis about a month ago you were a great help. When I was hurting all I wanted was my ataxia friends because I knew they would understand.I did a lot of thinking at the time and what I learnt was the emotional impact of this disease. We lose skills and friends but we gain new ones.I agree with Micheal.My old friends are not delberately unkind;they are embarrassed and don't know what to say to us because they remember us as we were.I was the mother of the bride at the weekend so I saw a lot of familiar faces and a lot of the past was stirred up .I found it difficult but I think I was looking at events through rose coloured specs.I blamed my illness of course.But old friends and skills are replaced.All life is a series of changes .We all have to adapt cheerfully to our new changes.

I don't deny Ataxia is hard but my view is that it is the race set before us and that there will be arms and legs to support us when we need them.I used to do too much talking and not enough listening.Social occasions are difficult when you can't talk but you can still have an encouraging voice.I just felt like a sack potatoes heaved here and there but that is not true.I am of use still.

Marie

Take care and remember you have new friends who do understand on this site

10

Yea I date a little but that's it. Men just do not want any part of this. But what hurt the most was. I had my child taken away from me for a night. Because my ex told Milwaukee police I was drunk and I shouldn't have my son. I tried to stay calm. They would not do a breathalyzer test on me. They told me I showed all the signs of being drunk. So I sat at the police station for 14 hours to prove I was not drinking. I wasn't arrested, I sat on the bench. And of course when your nerves and upset the legs get real bad. I was a mess when I got my child back but I did not drink. And you know I never got an apology from the police department.. So Ataxia is a very sad disability.

11

Hi Kay, Lori, Michael, Marie, Marty, Sarah,

(in alphabetical order)

Thanks for your encouragement. I think I am not so lucky as most of you because you have family stands by you.

Friends are the sources of my emotional support.

For one of my long time friends.... sigh....

When I was suspected for ataxia, I called her as I almost collapsed. She was frightened.

I told her not to worry as this won't be transmitted over the phone, I tried to use a joke to round up the conversation.

Few months later, she called and asked me out for dinner.

I thought she was ready to listen or support me, it's good to have a chat. I promised to go.

She continued the phone conversation and asked me about my test result, I said that's positive.

On the day we supposed to meet, she left me a voice message in the morning and said she was busy...

The dinner was cancelled, no further phone call... I haven't seen her for almost half year now.

I wondered if this is my fault or some of you have experienced a similar situation.

This sharing is important to me, thank you so much for all of your kindness sharing.

I think it's time to adjust my thinking and set a "friends like that who needs enemies" mode .... hahaha....

After deep thinking, this is my direction, welcome for suggestion ^^

I will try to learn how to make fun on myself and smile more....

Without ataxia, it is normal to have ageing.

With ataxia, before it is going to deteriorate more and more, I will try to enjoy life and seriously love every moment that I will come across.

Will try to differentiate who and what is worth my time and energy. If it doesn't worth it, I should let go.

If totally deterioration is equivalent to zero on account statement, that means partial deterioration is a positive figure.

If I let those unworthy issue to drag me down, it will depreciate the value of my life, the positive figure.

OK, let me live in this direction.

God bless me and hope I can make it.

Will try to keep smiling ^______^

Charmaine

12

Hi Lori,

It must be hard when you have ataxia and need to take care a son.

You are so brave!! It is not easy to stay in police station for 14 hours, in front of strangers, to prove you are not drinking.

It seemed like the police have been conquered by your persistence.

When they withdrew their judge, that means they admit they mistakenly judge you.

They haven't apologized.... maybe they feel embarrassed to misjudge you....

and they don't understand apology is important.

Lori, you love your son so much. You are a supermom !

Previously I feel upset when people treat me bad and this will last for a period of time and drag me down.

Now I understand that if that people treat me bad and I keep thinking about it, it will waste my time.

If will further hurt me when I think of it. Once is enough, no more !! I won't allow it ! (I'm learning to live in this way)

Will try to let go and focus on things that I love to do.

Lori, hope God and time will cure your hurt and let such irritating people or issue to go away.

Don't give up. Let's us learn to be strong together (handshake) ^^

Charmaine

13

Hi Michael

Wow, a wonderful song, I love it. Thanks.

Kind regards,

Charmaine



Michael Ward said:

http://www.youtube.com/watch?v=v7KLBWEJgao&feature=related

You got a friend!

Carol King sings this song so well.

James Taylor wrote this one.

This is my song for this post!

Kind regards,

michael

14

Hi Michael

Thanks for your reminder and sharing. It is very valuable to me.

Even this is an outline of your life path, it is a good reference to me.

It's hard for me to reply you when I read your message because it involves many things that I have never imagined - the possible change of my life. I need time to accept.

Feel better and able to locate where I am now....

thanks for being my friend

Charmaine



Michael Ward said:

Hi Charmine:

I had 100's of friends if not near 1,000.

When I tried to explain to a long time friend about my health he said let's talk about it over lunch.

This was 2 years ago. I haven't see him? Not even a phone call?

You do find yourself more and more withdrawn from social situations.

All you have left is family.

My wife is my closes friend.

I was a popular extroverted socialite.

This has changed.

I have a different path I'm on now.

Everyone has issues so just let them deal with them alone as they let us deal with our issues alone.

Charmine you have new friends now.

We may not be the ones you ask for however we won't miss judge you.

Support and Sharing is why we are here on this site.

Your friend,

michael

15

Since I found this site I have learned so much. It is so much easier to feel good about our self's. We have to work so much hardier at something. We may not be able to do most things. But what people dont understand is our hearts are the same. We love just like we always did. As much as people dont think they want us as friends, We need to make better ones! I'm starting to look at this disability like " Okay I was delt this hand in life, Im going to do my best to play it."



Charmaine said:

Hi Lori,

It must be hard when you have ataxia and need to take care a son.

You are so brave!! It is not easy to stay in police station for 14 hours, in front of strangers, to prove you are not drinking.

It seemed like the police have been conquered by your persistence.

When they withdrew their judge, that means they admit they mistakenly judge you.

They haven't apologized.... maybe they feel embarrassed to misjudge you....

and they don't understand apology is important.

Lori, you love your son so much. You are a supermom !

Previously I feel upset when people treat me bad and this will last for a period of time and drag me down.

Now I understand that if that people treat me bad and I keep thinking about it, it will waste my time.

If will further hurt me when I think of it. Once is enough, no more !! I won't allow it ! (I'm learning to live in this way)

Will try to let go and focus on things that I love to do.

Lori, hope God and time will cure your hurt and let such irritating people or issue to go away.

Don't give up. Let's us learn to be strong together (handshake) ^^

Charmaine

16

Hi Charmaine

Thanks for your appreciation.The physical seems to lead to a lot of emotional pain.Having familes are wonderful but that is the source of the pain.My main problem is remembering the past becuase for me that part of the brain is unaffected.I need to say goodbye to the past and embrace the new.It is not easy and I think I might need some counselling to help me and medication in the form of upping the anti depressants.I think all of you who are going it alone without a husband are very brave.I know how much I rely on him to be my helper both emotinally and physically.

There is hope as I got married for the third time at 48.I am now 52. When i looked at my daughters wwedding photos I was lumped with the fogeyswoblbling and sitting on chairs.That hurts.But they have wisdom which many of the very young dont have yet.

The reality is my mind is ok but physically I feel an old wreck.It goes back to the question of is it better to have had the experience and lost it or never to have had it at all.All i know is the emotional pain but if we can conquer that then that is the Peace we all desire.

The very things that brought me and my third husband together like walking and gardening I can no longer do.I dont think he knew then what he was taking on when he said in sickness and in health but he is the rigt person for the job.Sometimes God or a Higher Power gets rid of the scenery for the next Act to follow.I learnt that before I met my present husband as I was in a relatinship that was going nowhere.Sometimes we have to clear away the scenery and that is painful,letting go.Waiting is even harder.Let go of the past and look forward to the new.

Marie

17

Marie, I am so happy for you! I would be on my third marriage to. If I can find that right person. I now have much hope! I am sitting in most pictures to. I have two small grandchildren that I cant play with. We play catch with a big ball and they are very close. That hurts because they just do not understand. But reading your post gives me very much hope!

Marie Turner said:

Hi Charmaine

Thanks for your appreciation.The physical seems to lead to a lot of emotional pain.Having familes are wonderful but that is the source of the pain.My main problem is remembering the past becuase for me that part of the brain is unaffected.I need to say goodbye to the past and embrace the new.It is not easy and I think I might need some counselling to help me and medication in the form of upping the anti depressants.I think all of you who are going it alone without a husband are very brave.I know how much I rely on him to be my helper both emotinally and physically.

There is hope as I got married for the third time at 48.I am now 52. When i looked at my daughters wwedding photos I was lumped with the fogeyswoblbling and sitting on chairs.That hurts.But they have wisdom which many of the very young dont have yet.

The reality is my mind is ok but physically I feel an old wreck.It goes back to the question of is it better to have had the experience and lost it or never to have had it at all.All i know is the emotional pain but if we can conquer that then that is the Peace we all desire.

The very things that brought me and my third husband together like walking and gardening I can no longer do.I dont think he knew then what he was taking on when he said in sickness and in health but he is the rigt person for the job.Sometimes God or a Higher Power gets rid of the scenery for the next Act to follow.I learnt that before I met my present husband as I was in a relatinship that was going nowhere.Sometimes we have to clear away the scenery and that is painful,letting go.Waiting is even harder.Let go of the past and look forward to the new.

Marie

18

Hi Lori

I remember the pain but only when I am reminded.When my daughter was four and mmy son was six,Social Services threatened to take them away from me.That was years ago before I even had ataxia.Apparently my daughter was behaving oddly at school and that was enough.I was teaching at the time so it was all very embarrassing.I racked my brains to think what i had done wrong and months later the truth emerged that it was her accusers not me aftrer all.I was very bewildered at the time and frightened.But it is all now forgotten about and she has just got married.It is just one hurdle to overcome as a parent.There was a lot of joy to look forward to. I carry a card around now as I look drunk.Doesnt look too good when yu stagger out of pub toilets hanging onto door frames.I am teetotal too and have been for 10 years.

The things we do for our children!!There is hope.Although I was saved from a police cell.We have such a rare disease even doctors havent heard of it.My friend from our Ataxia group is often arrested as he staggers back into his car.I had a nasty letter from the police.I waas very upset at the time.I also had a visit from a very nice Policeman.I dare not open mymouth to speak for fear of making things worse so I let my friend do the talking.A member of the publi c had reported me for clipping a kerb so things you could get away with before you cannot with Ataxia.AS a consequence I have almost given up driving and just use my mobility car for emergencies now.But I am constantly looking behind me and thinking all motorists are my enemies wheras there are in reality alot of kind understanding motorists out there.

Marie

19

Marie and Micheal,

Thank you for the good advice! Micheal Im calling my doctor right now.

Lori

Michael Ward said:

Lori a couple of years ago when I was investigating my balance issue the following happened to me:

I was up north on a business trip when I had a car accident after a golf outing with some customers.

This car was going twice the speed limit when it hit my rental as I was making a legal U-Turn.

It was my fault and I should have really verified before proceeding making my turn.

The sun was in my eyes and the car was white and unwashed driven by a woman that looked like she was on Crystal Meth. When the Police came they made me do a sobriety test.

This happened near the golf course I was leaving.

During Golf I only drink Ice Tea (Did not have any alcohol).

I could not walk a straight line so the police officer threw me in the back of his police car.

It was 95 degree and the sun was shining through the windows of the police car.

For 2 hours I was treated like a federal criminal?

Final this Police woman came with a breathe analyzer and tested my breath and found no trace of Alcohol.

The Policeman that put me in the back of his car was so mad.

He swore I was on sometime.

He wrote me a ticket to have my Driver License suspended.

I had to go to the DMW County Head Quarters and retake the drivers exam.

Then I had to take the driving part of the exam.

I passed all with flying colors.

3 month of worrying if I would lose my license?

I'm so careful when I drive these days. "EXTRA"

Once I was properly diagnosed my Neurologist gave me a Prescription of my Diagnoses.

I keep a Laminated copy of my Diagnoses in case I get pulled over for any reason.

I have another folded copy in my wallet in case someone calls the police on their cell phone and say's I drunk in public.

One time I got put over because some one told the police I was strange.

When he pulled me over I handed him my laminated card of my diagnoses and he told me someone called and reported me?

He was nice to me and let me go on my way.

Having an official document can save you a lot of grief.

I made one for each car I own.

You right Ataxia is a very sad disability.

I've learned to accept it and work hard to make though each day.

Think of the Storm Troopers in the Star Wars Movies by George Lucas.

That's what police are like.

Provide them documentation and your fine.

There just programed a certain way.

Provide information that there program can understand.

Keep some Documentation concerning your Ataxia with you to save yourself the grief of ignorance.

Kind regards,

micahel



Lori said:

Yea I date a little but that's it. Men just do not want any part of this. But what hurt the most was. I had my child taken away from me for a night. Because my ex told Milwaukee police I was drunk and I shouldn't have my son. I tried to stay calm. They would not do a breathalyzer test on me. They told me I showed all the signs of being drunk. So I sat at the police station for 14 hours to prove I was not drinking. I wasn't arrested, I sat on the bench. And of course when your nerves and upset the legs get real bad. I was a mess when I got my child back but I did not drink. And you know I never got an apology from the police department.. So Ataxia is a very sad disability.