My daughter Cassie has sca2, at the moment i would say she has balance problems but walks fine. Her speach is fine but maybe a bit slow. She works 9.am till 1.00pm 5 days a week and is on her feet all that time. Monday to thursday i take her to the gym for an hours workout and she has an exercise bike in the house. She could not walk heel to toe but through practise she can do it ,if a little shakey. Does anyone think i am pushing her too hard? She is on a healthy diet too. I am determand to keep her going till they find something for this. but i just dont know if i am pushing her too much even though she seems ok with it
Hi Punk-I’ve been on the other side of the fence, and I can tell you that I found it extremely frustrating trying to live up to someone else’s expectations, plus meet my own and recover and learn to deal with the odd looks, etc.
I think that support is very important-but like all things, there are boundaries.
It seems that you want to do the best thing for your daughter; I can assure you that she doesn’t want what she has, and I would think that you’re both on the same page, so to speak.
Probably the most important lesson-learned from this specific experience is that between internal and external motivators are concerned, I had limited energy so I couldn’t keep burning the candle at both ends and had to choose only one, which was internal.
Of course, a lot depends on various factors like her age, etc., but this is just my outlook from one of my experiences.
Thanks Julie, great to hear from you. Cassie is only 21 and i am aware she wants to have a 21 year olds life. I think its just fear Julie but we will get there. Many thanks
I dont think you are pushing her too hard, Punk. Although my CA was probably from birth, it wasn't really 'triggered' until late into my 50's. On reflection, life was always 'catch up' with my friends and family. I think it's good to keep pushing.
Cassie is very lucky to have such a caring parent.
Oh my heart goes out to you... This is one of my biggest questions: How much is too much? I wish I could offer more than support. Answers would be great. Best wishes to you both,
Oh my heart goes out to you... This is one of my biggest questions: How much is too much? I wish I could offer more than support. Answers would be great. Best wishes to you both,
Thanks Lisa i think you just keep going and going.My son Gary had cancer when he was 15 and survived and my dad killed himself when i was 18 but we got through all that and i wont let this take my beautiful girl without a fight and the help from all of you. I dont want sympathy from anyone, i just want you all to fight this bacause you are all great people and thank you so much.
At 21 must be very difficult to suggest anything
A great relaionship must exist between you
Push by all means but also keep asking everyone
Seasonal regards
Hi Punk, Sounds as though your precious daughter is doing amazingly well! Yes, I believe with ataxia, exercise and healthy eating are two helpful ways to keep it at bay. And, that's great that she's able to work a bit. Doing something else, if you can, takes your mind off yourself, and really gives you a purpose (my opinion only, as I don't want to offend anyone). As a former social worker, who retired from my job due to ataxia, I really miss it, and am trying to find a volunteer job I can do. I think it would be good for me mentally to get the focus off my ataxia, while helping others. If you're daughter is OK with what she's doing, then all is well! At 21 years old she can make decisions for herself, with your support and guidance! You sound like a loving, caring parent, who only wants the best for her. She's lucky to have you in her corner, and your fortunate to have such a motivated daughter! I think this saying is so true: if you don't use it, you lose it...,ha! Best wishes! ;o)
I suppose you need to question is do you have the other kind of "balance" in your lives? Does your daughter think that the quantity of work is warranted for her physical gains?
Do you have time to sit and talk? Does she get the amount of rest she needs? Does she have enough time to go out and socialize with friends her age? Do you play board games, cook together, go out to see a show or concert? or is the message that life is all about recovery and trying to become someone different that she is right now? Does she feel happy with who she is right now? What does she want? Is the goal to get big improvements? Is the goal to maintain her progress?
I love going on walks with my husband or daughters; we have good talk and time together and the exercise is good for me. I have friends I go swimming with or to exercise classes and to me is fun. I despise doing the physio style exercises.
You are to be commended for what a caring parent you are. Parenting young adult children is so challenging and at the same time so rewarding.
Thanks Linda, i dont think Cassie is any different, i just think she exercises more wich is good for anyone. Cassie has a boyfriend who is great and she has a good set of pals. I want more than anything in the world for her to have as normal a life as she can. I think i am just looking out for her and trying to find that ballance of not smothering her and not doing what i can
Thanks Rose I hope you do find something you can do and keep strong mentally. I told Cassie to do everything she wants and when the time comes she needs a hand then i will be there. She hopes to go to New york this year. With myself its music, football, reading and walking.
Punk
rose said:
Hi Punk, Sounds as though your precious daughter is doing amazingly well! Yes, I believe with ataxia, exercise and healthy eating are two helpful ways to keep it at bay. And, that's great that she's able to work a bit. Doing something else, if you can, takes your mind off yourself, and really gives you a purpose (my opinion only, as I don't want to offend anyone). As a former social worker, who retired from my job due to ataxia, I really miss it, and am trying to find a volunteer job I can do. I think it would be good for me mentally to get the focus off my ataxia, while helping others. If you're daughter is OK with what she's doing, then all is well! At 21 years old she can make decisions for herself, with your support and guidance! You sound like a loving, caring parent, who only wants the best for her. She's lucky to have you in her corner, and your fortunate to have such a motivated daughter! I think this saying is so true: if you don't use it, you lose it...,ha! Best wishes! ;o)
Thanks Barney i am certainly listening to all of you
Punk
BERNARD PURCE said:
At 21 must be very difficult to suggest anything A great relaionship must exist between you Push by all means but also keep asking everyone Seasonal regards
I have to wonder what your daughters true feelings are. I would suggest having a sit down chat. Face to face and ask her. Then paraphrase back to her, what you think she said. Give her questions that are open ended. i.e.: "How can I support you?". Not questions that require only a yes/no response. No interrupting, generalizing, or mind reading. Give her time to think about her responses.
I'm assuming she lives with you. Does she seem too exhausted? Has she typically needed a person to "push" her. I have to think, it needs to all be her decision at her age. She's an adult. Good guidance and encouragement is priceless. Being controlling and pushy is not. Since I'm not there, I'm not assuming you're being pushy or controlling, just think it needs to be considered.
Just for the record; I have 3 grown kids. My husband has to remind me to back off with them occasionally. He says, "If your mom did that to/for you how would you feel?". It helps me to put it in perspective. :-)
It's nice to see a dad involved in his precious daughter's life.
I can't really judge your daughter's situation. But I can offer this.
One of the most frustrating things for me since diagnosis is the expectations of others. I've had to learn to say no. I've gone through a lot of unnecessary physical pain when I've tried to keep going past my limits.
Wonderful advice Julie. We do talk lots and have always been close. Cassie can be a deep wee soul,and not say much at times but she seems to talk whenever the need takes her, and i try just to listen. I do notice when she is tired and give her space. Like my son i wish i had the illness to know what they go through and how they feel. I guess i,m just scared thats all
Punk
Julie Hahn said:
I have to wonder what your daughters true feelings are. I would suggest having a sit down chat. Face to face and ask her. Then paraphrase back to her, what you think she said. Give her questions that are open ended. i.e.: "How can I support you?". Not questions that require only a yes/no response. No interrupting, generalizing, or mind reading. Give her time to think about her responses.
I'm assuming she lives with you. Does she seem too exhausted? Has she typically needed a person to "push" her. I have to think, it needs to all be her decision at her age. She's an adult. Good guidance and encouragement is priceless. Being controlling and pushy is not. Since I'm not there, I'm not assuming you're being pushy or controlling, just think it needs to be considered.
Just for the record; I have 3 grown kids. My husband has to remind me to back off with them occasionally. He says, "If your mom did that to/for you how would you feel?". It helps me to put it in perspective. :-)
It's nice to see a dad involved in his precious daughter's life.
Hi Punk, I think it's wonderful that you are so supportive of your daughter. It's really hard to say if you are pushing her too much because only she could answer that. My parents were always very supportive of everything I wanted to do in life and without that I don't know where I would be now. What I have found most difficult is this - over time my ability to function has become worse, my symptoms increased though still mostly invisible to others and it is difficult to get others to understand my increasing limitations especially when you don't have a diagnosis to explain your symptoms. I have been told things like "you are exaggerating" when I tell people how fatigued I am and "you've got too much on you're mind" when I have problems with my speech for example. I think if you listen to your daughter, continue to try and understand things from her perspective and offer support then you are doing a great job!
I agree Ladeejane, sometimes the hardest thing for people is to listen. When i think it is a close relative, maybe they just dont
want it to be hapening to their loved one. I always try and listen to Cassie when she says she is tired. Its not a nice position to be in but it is the way it is. The response from people has been amazing and i thank each and everyone of you. I can only hope that one day there will be a good outcome for all of you.
