Hi it’s my partner who has the ataxia, he’s had it for about 2.5 years, he is now getting a lot more pain in legs, knees, back, shoulders, everywhere really, he keeps saying tts the knocks he used to take years ago playing American football and cycle racing but I’m
Not so sure, is it the condition? His body is getting lower and lower getting one infection after another and not letting his body rest before another comes along, he doesn’t sleep brilliantly and is just exhausted he keeps saying he doesn’t know if he can fight any more, he doesn’t know if he wants to be in a relationship with me anymore, he keeps saying things like his body doesn’t belong to him anymore.
I love him so much and don’t want us to break up but he keeps saying he’s a burden, I tell him
He’s not, I met him when he already had the condition so don’t know him in his ‘before, normal’ state
I suggest seeing the doctor but he says there’s nothing they can do.
Please can anyone help
Me regards this as I fear he will just keep pushing me away. Is all this pain normal for ACA?
Does anyone know of anything that works?
I guess it’s like a grieving process but I can’t carry on seeing him like this.
Can anyone give me any suggestions? No matter how small please?
I will be so grateful.
Thank you. X
Sorry that should say SCA not ACA. X
Hi, Julie, I don't have advice, but I would recommend you join our Caregiver Support Community, as you will find many there dealing with similar issues, who may be able to help you cope. There is a link to it on the Communities list on the Main Page. All the best to you!
Well I do Julie! Firstly,he's so lucky to have you..Brace your-self..ok! The symptoms he's having are as per normal with this darnn disease..They could get worse unless you get him involved with others that are going thru the same pain.Women,children,it don't discriminate...There are pain management and movement,balance information by some doctors with Ataxia knowledge..Hard to find I know..This site can help..( he can visit too..)..Now you have to get support also..don't ever doubt your OWN strength..You've
posted here with great courage and my support will always be here..I have this &*%$#@ * disease..9' years now and still kicking..lol..The past has touched me,the future will HOLD me..Take care now,ya hear..Ozzy
Hi, Julie, I have a similar condition and have found Duloxetine (Cymbalata) very helpful. If your husband wont go to the doctor can you speak to them on his behalf?
All the best, Anne
I would get him to an ataxia specialist. they can prescribe him meds that may help and google on the internet for alternative therapies. he's going to need help, your help. it's difficult to investigate by his self. good luck -lorraine
Hello there Julie
He's only pushing you away because he doesn't want to take you on this ride with him. He's waiting for you to give up or might just try to end the relationship himself. Well..DO NOT let him. He obviously loves you and wants to spare you because it's quite hard on the caretaker -YOU- as well. Only thing to do is convince him that you want to share this life with him, over and over again and that there's NO way he'll be able to chase you away because you love him immensely. Tell him the body is only the 'house' that you live in and not WHO you are. And that you love him for WHO he is.
And tell him to look into this site as well, so he will KNOW that he is far from alone. This site helped me a bunch.
Take care, be patient, hugs from Holland, Elle.
Helllo Julie,
Hubby and I have been on this ride for over five years. Please send me a friend request and let me know a time that we can talk. I can help your situation.
Joy
Thank you to everyone for your replies and advice, I’m telling him over and over I’m in this with him and he’s not doing it alone as I’m going no where but it’s so hard to see him sinking deeper and deeper into this depressive state, I know he’s exhausted and his body is tired but I’m trying to make him do even little things each day, have a shower, tomorrow we’re going out just for a drive he doesn’t have to get out the car just some fresh air and a change of scenery just little things until I can get him into our GP, he has a neurologist at the hospital but isn’t due to see him until June, should I request to see him earlier? An I doing right getting him to do things even tho his body is tired? I just don’t know if I’m doing the right things or if I’m making things worse. I know I’m not leaving him, I met him whilst he had the xo diction and didn’t know him as able bodies if you like and have always told him I’m in this for the long haul, I just hope he doesn’t try too hard to push me away.
Hi, I am so sorry. Its tough for people to come to grips when their body no longer co-operates. Your partner has quite a few things going on and I wonder if he is depressed.
I had a cousin who had abandonment issues and in his mind he would think "you're going to leave me anyway so I'm going to do everything I can to push you away". He would throw tantrums, break things and just be mean to people close to him. It does get frustrating but just keep reassuring him that you're not going anywhere.
This disease is progressive, incurable and pretty much does what it wants and progresses how it wants. I would suggest staying active, exercise, I would go to PT, OT and speech therapy if needed. They have taught me a lot (even just being able to walk better). Just make sure your PT specializes with neuro patients NOT orthopedic. Believe it or not there is a difference.
This disease makes it hard to get around so we want to hole up in the house but you can help by making him go out and be as active as he can.
Julie, it sounds like your partner is depressed which is normal with ataxia or, I suppose, anything that causes someone to not be able to do what they've always done. His poor health adds to this. My GP or PCP prescribed an antidepressant for me. It helped a lot. Pt and ot are helping with strength. Be sure, as stated above, that therapists have experience with neuro patients. Also, check why he is hurting. It's been my experience that even though ataxia is unpleasant in many ways the aches and pains I have are not due to the ataxia. I showed the first signs of ataxia in 2011 and it has gotten progressively worse since.
Hi Julie,
Like the others who have responded. Do NOT give up on your partner. Life is a ride for all of us. He will need your support as time goes moves forward. May I suggest the National Ataxia Association. If you are in the USA, the association has local branches. You can attend their meetings for free. Meet others that are going through your same experience. First know you are NOT ALONE!! I have an aunt that has been in the battle for a number of years. And, if he has not done so, find and Ataxia specialist, one may be closer than you think. The National Ataxia association has a list of then on their website.
All the best!!
Travelguy
I know what he`s going through, mine suddenly came on suddenly (literally overnight, though thinking back, some symptoms have been happening for years) towards the end of 2012. I find that weight training helps a lot. The main thing with Ataxia, is at least maintaining, if not increasing core strength. I`m damn sure I would be wheelchair bound by now, but I`ve managed to slightly improve my mobility + I don`t feel/think about it when training.