The family planned a day trip to a dog show. When we were first planning this, 2 weeks ago, I told my husband I need to rake my motorized wheelchair because I get so tired, and there would be a lot of walking around. Well, my husband would not take my chair. He said it was too much trouble, and it is such a pain. He yelled, " why can’t you just take your walker". I said to him how tired I get, and that this was planned all along. We got this motorized chair, and we got a trailer for his truck, so that we can take it on day trips. I said I couldn’t go, I wanted him to just take our daughter. I ended up going, and having a terrible time. He doesn’t understand how hard it is getting around. He is having a terrible time with this disease. I feel I cannot leave cause of my health, and I don’t want to leave my daughter. His attitude is horrible. He makes my dealing with the disease so much harder.
I can unfortunately relate to this. I don’t have a similar family situation, but the rest I totally get. As if it’s not difficult enough to deal with these changes on your own. It has to be difficult on the spouse, but come on. Feel free to vent here.
I don't understand some people butterfly, People are meant to care for each other then when something goes wrong they just don't want to know. You deserve better than a selfish brat for a husband and if you had someplace to go with your daughter you should go. Maybe you are unsure of the future and that's why you stay, but the mental pressure must be torture for you.
I'm sorry for what you're going through with your husband. I believe that if a person has problems, with Ataxia or any other problem, another person cannot totally understand it unless they are going through it themselves. I know this answer doesn't help your situation. I kind of go through the same thing with my wife. She says she understands, but I don't think she totally does. Hang in there.
Hi
I feel sorry for you my husband was the same but something happened Im sorry I dont know what happened but it helped that I broke down (tears realy upset) infront of him and also tryed to tell him how scared I was not just for me but for him too.
All that said others are right he will never truly understand, no one ever realy can as we all suffer differently.
All I can realy say is GOOD LUCK its up to you how it goes.
Bob
I agree with all these comments.. always two sides to any story .. my husband is usually quite understanding but he's not perfect.. let's face it, who is!!
I would never consider leaving him due to lack of consideration... I love him too much for that..
I guess we just have to play the game according to the cards we are dealt but we are all responsible for our own life.
Maybe your husband needs to talk to your doctor to get an idea of what you’re going through from an informed third party, or a mental health professional may give him some good ideas or how to deal with it. Good luck to you.
Kathy
My father had SCA6 as I now have. Although family member were and are still compassionate about the disease process it is a difficult process for other to understand and at times, accept.
Even though I watched me father struggle for 15 years or so I could not understand what he was going through until now as I experience the decline. I certainly did not understand the fatigue aspect of the disease.
Participation of family members in support group forums might help.
I am in the same situation, minus a child, but we have a dog. Sounds like he is in denial. Can you give him things to read on ataxia? I was asked to submit a list of my symptoms and limitations to my Disability Insurance Company. I asked him to proof the list so he would read it and hopefully it would sink in. I feel your pain. Not only do you have the disease to deal with, but him too. How can you raise your consciousness so he does not bother you? That is the question I ask myself.
I suffer in somewhat the same way. My daughter (nearly 24 yrs old now) has been cruelly inconsiderate to me since I was diagnosed when she and my son were only 7. She has reduced me to tears on many, many occasions. She will make me wobble along with my walking stick or, if she does hold my arm, walks so fast I feel I am going to fall. She won't take my walker in her car - a white VW Golf. My fatigue is looked upon as laziness. My son (her twin brother) is a little better, but when he's at home he spends his time shut away in his bedroom or at his girlfriend's place. However he will offer his arm when we are out walking and will help me into and out of his car. At least you still have your husband! Mine left me soon after diagnosis, divorced me soon after, and has now remarried. I just hope his new wife never becomes ill! I have always had more kind support from friends not family.
Good luck and very best wishes to you and your family.
It's a really peculiar illness isn't it? I always say it is like many disabilities rolled into one.I can walk but can't balance.
I took my rollator to a local agriculrure show.My legs would not go over the rough grass and I was just dragging along.
It is a very difficult disability to have because so few understand that it is balance not mobility.
You can have trampers which are big mobility scooters for rough ground.You have to think in advance though.You could get your husband to phone in advance then he does not have the hassle of trying to fit a big bulky item in the car. Just a practical note as I hate having to be dependent on somebody else. My husband is very good but I think many people lack understanding about Ataxia as loss of balance is so difficult for anyone to understand.We are having the same problems with the wet room.I need grab rails to hold onto for artificial balance and I am afraid to lift my legs too high.
You are not alone.It is the disease speaking not you.
Marie
He will never totally understand.
However, you have perfectly reasonable expectations of him supporting you. "In sickness and in health" comes to mind. Frankly, some people just don't have what it takes to go through a tough situation like having a spouse who is chronically ill.
My husband is a complete sweetheart though all of this, but I know I'm am particularly blessed. My ex would have been even more of a jerk (if that were possible).
I think the idea of him talking to a doctor about the realities of your chronic illness is important and a good idea. I also like the idea that he get's support too apart from you for being the "care-taker". It's a tough role for even the best of spouses.
You're not alone.
Dear Butterfly,
This is a recurrent theme on this site and I think spouses of the suddenly disabled are a group unto themselves. . Maybe there is a group meeting in your local Y?? You know God can shut the lights ot at any moment..... on him too! It is a privilege to care for you, not a burden. I am thinking now of a man who married a woman who discovered that she had breast cancer a week before the wedding. She gave him an out. But he persisted. It was reported in the Vows section of The New York Times.
Of course, I wish him only well. Yes, this is a weird condition. Maybe he wants out and he can't say. Or maybe he wants closer in. It's hard to know where is head is at but I agree with the voices cited above. In addition or alternately to a dr. maybe you/him can speak to a nurse,physio, or pastor??Also theres nothing like honesty. Tell him how you feel.Maybe this will release the tension between you and him?? Don't be afraid of divorce. The worst has already happened. I've been thru both. In health, N
I too have ataxia, but my family is very supportive of it, The same with my depression. But people that don’t know or understand are not supportive or understanding of your pain. Making fun of someone who is having trouble with balance or speech makes them feel better than you. My chiropractor is making a big difference in my ataxia, which is great! Years of counseling have been beneficial to my depression. Hang in there! There is help, and you have found the right support group to find people to support and help.
Hi
I’m in the the same boat as you…I understand what your saying my wife doesn’t have a kind word… the yelling and attitude is very stressful it would be nice to have a arm and a loving spouse that under stood what it’s like…ataxia is tough enough by it self…
Do nt look t o your kids for support. Its too painful for them. And scarey. Kids like strength and safety. Also it's a long drawn out process. Still, at 24, your kids should start accepting the inevitable. Maybe they are afraid you will be a burden to them? Maybe, you are? Perhaps they can speak to a social worker or anyone they respect to get some perspective. That friends are often more understanding than family is often the case and one doesnt have to be a rocket scientist to figure out why. Friends dont have to worry about genetics or money or ultimate responsibility, for openers. Step back a drop and try to be a bit more independent of the kids. I know it's a disappointment considering all you must have done for them. But try to be their mom again.
Your ex is a different story. Dont think about him. I am sorry you are suffering but it sounds as if you have good friends. In health, N
Cally said:
I suffer in somewhat the same way. My daughter (nearly 24 yrs old now) has been cruelly inconsiderate to me since I was diagnosed when she and my son were only 7. She has reduced me to tears on many, many occasions. She will make me wobble along with my walking stick or, if she does hold my arm, walks so fast I feel I am going to fall. She won't take my walker in her car - a white VW Golf. My fatigue is looked upon as laziness. My son (her twin brother) is a little better, but when he's at home he spends his time shut away in his bedroom or at his girlfriend's place. However he will offer his arm when we are out walking and will help me into and out of his car. At least you still have your husband! Mine left me soon after diagnosis, divorced me soon after, and has now remarried. I just hope his new wife never becomes ill! I have always had more kind support from friends not family.
Good luck and very best wishes to you and your family.
Dont look t o your kids for support. Its too painful for them. And scarey. Kids like strength and safety. Also it's a long drawn out process. Still, at 24, your kids should start accepting the inevitable. Maybe they are afraid you will be a burden to them? Maybe, they can speak to a social worker or anyone they respect. This is often the case and one doesnt have to be a rocket scientist to figure out why. Your ex is a different story. Dont think about him. I am sorry you are suffering but it sounds as if you have good friends. In health, N
Cally said:
I suffer in somewhat the same way. My daughter (nearly 24 yrs old now) has been cruelly inconsiderate to me since I was diagnosed when she and my son were only 7. She has reduced me to tears on many, many occasions. She will make me wobble along with my walking stick or, if she does hold my arm, walks so fast I feel I am going to fall. She won't take my walker in her car - a white VW Golf. My fatigue is looked upon as laziness. My son (her twin brother) is a little better, but when he's at home he spends his time shut away in his bedroom or at his girlfriend's place. However he will offer his arm when we are out walking and will help me into and out of his car. At least you still have your husband! Mine left me soon after diagnosis, divorced me soon after, and has now remarried. I just hope his new wife never becomes ill! I have always had more kind support from friends not family.
Good luck and very best wishes to you and your family.
my heart feels for you butterflyflyaway, ( what a beautiful member name) I have a son who has this condition, and I see daily how much he struggles,so days are good and others not so good. When he gets stressed it makes his condition that much worse. He also gets very tired easily, he has my support and his sister's. I clean his unit for him when he asked me too, I dont want to take his empowerment away from him, I do his washing as he has trouble standing and trying to hang it out. In say that he show his appreciatation by cooking me a baked dinner from time to time. It breaks my heart to see him struggle so much and also knowing that it will progress even more to a bigger struggle. Husbands can be real 'shits" at times,you really need his support,I wonder what sort of a man he is, to be without empathy and understanding for your condition, I also understand that to leave him would be a big step. Take care of yourself my friend, and try to find the strength to continue to live your life to the best of your ability. Aussie Mum kath
Time is what he needs
I agree he will never fully understand
Think of it as a different stage in your life
Regards
Barney
Thank you so much for your reply. He has been having a terrible time with my illness. Everything was fine until my symptoms started to show. I would say it has been about 6 years that I have really been progressing bad. It has been so bad that I asked him to leave. He is so rude to me. He is cruel also. I feel so trapped. I just try to ignore him, and just hang in there. Thanks again, it makes me feel better to see that people are listening, and understand what I am going through.
Cally said:
I suffer in somewhat the same way. My daughter (nearly 24 yrs old now) has been cruelly inconsiderate to me since I was diagnosed when she and my son were only 7. She has reduced me to tears on many, many occasions. She will make me wobble along with my walking stick or, if she does hold my arm, walks so fast I feel I am going to fall. She won’t take my walker in her car - a white VW Golf. My fatigue is looked upon as laziness. My son (her twin brother) is a little better, but when he’s at home he spends his time shut away in his bedroom or at his girlfriend’s place. However he will offer his arm when we are out walking and will help me into and out of his car. At least you still have your husband! Mine left me soon after diagnosis, divorced me soon after, and has now remarried. I just hope his new wife never becomes ill! I have always had more kind support from friends not family.
Good luck and very best wishes to you and your family.