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Ataxia Support Network

Talk to Distant Daughter


#1

My 40-year-old daughter lives 700 miles from me. We are not close. She is kind when she calls on holidays. She has kept me “out of the loop” concerning my 2-year-old granddaughter. She has never called me to talk about her. I see pictures on Fb and once on a video call. I have never had the discussion with her about my hereditary ataxia. I only found out myself over the last 4-5 years since mine is late-onset. I thought I understood the gene inheritance aspect last year thinking since their dad has no sign of it and basically reassured my grown children. Less than a year ago I learned the truth to my horror of 50%. I decided not to share this with my grown children because possible devastating impact on their emotional life; insurance complications; no treatment or cure; no active signs in any of the three adults. I have become aware that my granddaughter had a lot of difficulty learning to walk and it’s still not clear to me if she walks normally. How do I talk to my daughter about it? I’ve been putting it off and putting it off. We had a terrible scene once that colored our relationship which I attribute to my emotional breakdown after a brain-stem stroke. Help me “see the light” and put on my big-girl mother and grandmother pants.


#2

It is difficult in the best of circumstances,which you certainly do not have. It seems that you already know what you have to do and why it is important. I suggest you practice what you want to say to be clear and present all the facts you want her to know. Animals or pillows are great practice audiences. If she knows what is going on with you, that is a way to approach it. Good luck!


#3

Thank you Linda. I figure that I do you know what I have to do. It’s procrastinating giving her horrible news, very possibly, about The future. I never ever considered I would ever have to do something like this. But what if some promising treatment turns up for my little granddaughter. I don’t even know if she has it. But the possibility has to be told to her parents. Thanks Linda. It was a comfort that you answered me.


#4

And Linda, it was great advice. I’m going to follow it.


#5

I will be thinking of you and sending lots of good thoughts. I forgot to mention before that writing down what you want to say can help out. Also, although the discussion is best held directly you could write a letter if you can’t bring yourself to talk about it. You will be glad, I suspect, to have this behind you.


#6

Linda4 http://www.livingwithataxia.org/u/linda4
April 23

I will be thinking of you and sending lots of good thoughts. I forgot to
mention before that writing down what you want to say can help out. Also,
although the discussion is best held directly you could write a letter if
you can’t bring yourself to talk about it. You will be glad, I suspect, to
have this behind you.

Visit Topic
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#7

I’ll have to do it. Makes me sick. She doesn’t even like me anymore. And I’m planning on giving her the worst news of her life. This is basically agonizing. I’m not doing it tomorrow. I have to think on it a bit more. Can this get any worse? But I’m grateful to you. You seem really on top of it.


#8

Erased. Erase Erased.


#9

Hi🙂 Are any of your other children emotionally close to your daughter? Could they ‘bridge the gap’ in bringing you together on a better footing before you broach this subject?

Try to find out if there is actually any health problem going on with your granddaughter, before wading in and suggesting what could potentially be the wrong diagnosis for her. What type of genetic ataxia have you been diagnosed with?

My own son and daughter may be carriers because of me, at the moment neither have any children. With my specific type, respective partners must also carry the same mutant gene before future grandchildren would be affected.

I suspect you must be in a complete turmoil at the moment.
Get all the facts in order before acting emotionally :slightly_smiling_face:xB


#10

Hi Beryl,
I am so happy and grateful that you and Linda are there and willing to give me some wise advice. My husband, my rock, has been away in England for three weeks visiting his father (84), other family members and friends he hasn’t seen in over 27 years. I’m afraid my daughter is not close to her two brothers. She and her family live off on their own in Northern California on a little “gentleman’s” ranch with poor phone service.

My oldest son visited them and from him I learned that she couldn’t stand or walk until about 1 and 3/4 years old. She would crawl everywhere. I have never seen a video of her walking.

I was diagnosed with Ataxia by an ER doctor because I suddenly couldn’t walk. (that passed thankfully) I realize that is a generic dx. My older brother visited me in 2016. He lives in NC. I’m in Oregon. I was shocked at his extreme ataxic gait. I had never seen that before.

I have had about 4 MRIs since 2005 when I had a brainstem stroke. First one a young technician commented how my brain looked like I was much older. Then finally I overheard “shrinking brain (giggle).” Or that’s what I imagined after the ER visit a couple months’ ago.

I belong to Kaiser and requested genetic testing from my PCP because of advice I received from a moderator at the National Ataxia Foundation forum. There was no reply at first from my doctor and then I felt hesitant because I had heard how expensive the DNA tests are. I cancelled my request because I thought no treatment, no cure, what’s the point since I know I have genetic ataxia because my brother and my own symptoms made it obvious to me.

“Turmoil” is an apt description of what I’m feeling. My heart says thanks Linda and Bev.


#11

Beryl, sorry. I forgot your name by the time I got to the end and didn’t want to go back and look because I was afraid my computer would do something inexplicable.


#12

Do you love your granddaughter? Do you want the best for her? Even though you don’t have contact I would put the feelings your daughter has and concentrate on you granddaughter. I would pass on websites if she wants additional info. I know if I was in your daughter’s shoes I would want to know. The best way to treat anything is knowledge. Ataxia is a rare disease and the doctors and her mom probably aren’t looking for that. Knowledge of this may bypass a lot of other possible diagnoses and treatment.


#13

Thank you Kay2. I needed that dispassionate point of view. I will contact
her today. Emily


#14

It’s done. Sorry if this is difficult to read. I messaged them as a group.

Hello to all 3 of my beloved children. I have something very serious to
make you aware of. I have been agonizing about this but you need to know.
As you know, I have hereditary cerebellar ataxia. I say hereditary because
my brother has it. You all (this is a correction to what I told you
earlier) have a 50% chance of inheriting what I have. If you have it, your
children have a 50% chance. It does not skip generations. It tends to show
up earlier in subsequent generations. The earlier it shows up the course of
the disease tends to be more severe. If you don’t have it, your children
won’t have it. You should verify for yourself everything I’m telling you.
It crushes me to share this with you. I hope we can have frank and open
conversations about this. Familiarize yourself with this site and other
ones. I belong to Ataxia Support Network. It’s there for you too. Finally,
this is a rare disease so a lot of doctors know nothing about it. There are
different types. Love you and we’re in this horrible development together.
http://www.ataxia.org/index.aspx
https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.ataxia.org%2Findex.aspx&h=ATN2MPo0Q1eGJl_2IuX_7eIh3ccPItoJ_XCCINzTx_LA3j-2OnUiG_5dzaGTgGVYryMTJj8dXJEbe7bU-uA9N26a5QegSAh7YOSprUOcz5jgKc36k8-igJJcFNTV2sOSMnWZ6diu
National Ataxia Foundation
NAF unveiled a brand new logo at the AAC! The new logo was designed to
encompass our proud past and prepare us to move into our focused future.
The concepts incorporated in the design: the font and the bold color of the
"NAF" symbolize strength. The circle connected to the A is to demonstrate
NAF’s…
ataxia.org
https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.ataxia.org%2Findex.aspx&h=ATOZTaLa_MmWpfLc8xquQZWJTDHjbWl-puOyzl8nZ8twKlc1M6v7fMG1SgbfBTb16_ZeoEOS7yNg24Psyazj2DGgZIWAD5ODAZl3-ARQPuTwhz-1mV0PfZUIAkbQfXrVldS8Tr3u&s=1

Well it’s done. My two sons took it well as below. I haven’t got a response
yet from my daughter. My 24 yr-old son is going to look into DNA testing.

Mom, you are a beautiful and wonderful person. You are not your brother;
this doesn’t define you. You have been, and always be my “home”. Whatever
you’re going through, I’m onboard, good or bad. please don’t be ashamed,
share and share away. We’re here for you. And if I get it? Whatever. I’ve
been blessed enough to count for two lives.
https://www.facebook.com/bret.levinton


#15

Congratulations! You did it even though it was very difficult or you,


#16

That was supposed to be for you. My typing sucks. My typing finger gets tired too.


#17

It was almost anti-climactic how serenely they handled the news. Everyone
of my three children were brave, conscious of my feelings, and unafraid of
the future. I am so proud of them.


#18

Congrats on talking to your family! I think our mind is more detrimental about thinking about what will happen instead of what actually happens.

My father had it and because he started telling me the symptoms I realized I had it. When I talked to my neurologist I was worried about my son and my brother. The neurologist said if they didn’t have symptoms then they don’t need to be tested.


#19

I agree Kay2. I was practically hysterical in my mind about it. It’s done!
And my children are a lot more mature than I imagined. They’re still little
in my imagination. Thank you. Your response finally pushed me to do it.


#20

I’m glad everything worked out.