My mum died this afternoon and I know it is something that at some stage we all deal with, but because of my condition I couldn't just jump in a car or on a train as she was 200 miles away. I have no idea why I am sharing this, but I am. Our condition takes away all the things that we once took for granted and I hate it. We have to deal with the terrible benefit people and explain over and over again what we have to go through and then we feel bad because are we over reacting or making a big deal, well today I am saying we are not. To take away the ability of freedom of movement is enough. I would stand up for anyone with our condition.
Denise.
Written by
DeniseLB
To view profiles and participate in discussions please or .
55 Replies
•
Bless you and sending heartfelt prayers for you and your family. Our ataxia condition and the loss of movement is indeed a devestating condition and as so often unless one has it and understands the complexities it can be sooooo misunderstood. God bless you always 🙏
I am so sorry for your loss , I understand exactly what you are saying . The condition affects our lives daily and I to hate that it does this . My husband can no longer drive and has lost so much more besides . Not many people understand and it makes it very hard . My thoughts are with you .
I have at least stopped crying for now and I have a great sister that is sorting everything out and talking to me all the way. Skype is pretty useful and speaker phones. Mum wanted us to sort out flowers so we are really going for, mum, nan and best friend flowers, I couldn't really think of any others. My sister said that mum would maybe think it was tacky and then secretly smile! Not sure what I am going to do without her.
My mum died 21 year ago when I was working, happy & healthy & it absolutely devastated me, so I can’t imagine the hellbyou must be going through right now & not being able to just get up & go to her in, even now it’s still hurts & saddens me.
I think anyone & everyone on this page who has any type of ataxia, will have empathy with you & how you must be feeling.
Perhaps you could speak to your family members if that’s at all possible or perhaps friends who can help you get there & hopefully someone will be able to put you up until after the funeral so you don’t have to keep travelling. Well I’m hoping this can be the case.
My deepest thoughts & condolences go out to you right now.
I’m so sorry to hear about your mother they are very important people in our lives. Mine passed away two years ago and I still think I’ll ring her. I hope someone will take you to her funeral.
You are right in what you say, sometimes I feel a freak because I carry my stick sometimes this is because I feel I walk better without it as my coordination isn’t good but I need it in case I feel as if I’m going to fall which I have done.
Look after yourself and try and be strong, this is a terrible disease which affects people differently.
I spoke to her everyday so that will be the hard part and constantly had to explain to her that our condition was not like a cold and I wasn't just going to get over it, the strange part I am going to miss having to do that.
I can sympathise with you, I too spoke to my mother on a daily basis, for a while there will be an emptiness but slowly things will improve, I know it doesn’t seem like it now but stay strong you have your own health to consider and stress doesn’t help.
I was talking with my brother and sister last night and it seems my mum has left a folder on everything she wants, plot organised and pre paid for, church service with a list of readings and hymns the flowers she wants she has made it so easy. None of us had a clue as to how ill she was, I was meant to be spending Easter with her and now I maybe but not quite in the way that was expected.
Stay strong Denise, as you know, I lost my father at Christmas, and my sister had everything to do, which was a kind of blessing really, as I could not do that much really
Well said. I have FA and massively affected my quality of life. Most people have never even heard of it. My own children are just coming to terms with my condition. X
I sympathise completely with you. Only another person with the condition understands. It was recently my step father’s 90 Birthday and his niece and son organised a big surprise party for him. I don’t think they understood why I couldn’t travel 225 miles for it and, without actually saying it, implied I was being too soft. I think he did too. RIP your mum Denise, I’m sure she understood and bless you.
It feels like the worst excuse and I going to have to travel there now anyway and for all the wrong reasons, but I guess I did tell you all as you would understand.
I am so very sorry to hear about your Mum, Denise! You have my deepest condolences for your loss. I'm glad you reached out to us in the Ataxia, community! We do understand mobility issues, and how difficult it is to try and move around, on a daily basis. Most people take it for granted that they can go from A to B with ease! With many of us, not so much! I'm sure that concerns you, because you probably wanted to be with your Mum at this time. I'm sure she understood, from how you said she prepared ahead for her funeral. It will take a while to adjust, and you will miss calling your Mum, but know that, at any time, you can reach out, on this forum, and people, in the Ataxia community, will be there for you! Take care!
thank you and at the moment I am a little lost for words as at another stage of my life I would have been with her before this happened and probably just been with her, my self hatred may take some time, but luckily other members of the family are not blaming me, but I still feel really angry.
Hi Denise, I’d spent the afternoon with my Mum , she’d been sedated and wasn’t aware of any of us. And, I’d only been home a few minutes when I had a phone call.. Because of ataxia symptoms I’d felt useless to her, but really what can you do.. Your Mum would know how much she meant to you and she obviously gave much thought to her final wishes, which must mean a lot to you, your brother and sister. xB
What you are saying I know is true, even if I was still driving I would not have made it to the hospital before they sedated her and my sister did at least get to have a few words with her. She was a very organised lady and I will miss her so much.
My deepest sympathies to you on the loss of your mom! As a fellow ataxian, I understand completely where you're coming from in regards to having ataxia and not being able to do all you want to do! Again, I'm so sorry for your loss! XO
So sorry to hear of your sadness and the loss of your
mum Denise. My husband struggled with ataxia for many years but never complained and never gave up trying to do things. I miss him desperately since he died of cancer last july. You might find the Sue Ryder site with bereavement forums very helpful and comforting when you are facing such a sense of loss. Look after yourself.
thank you so much and I am sorry about your husband.
I have actually been quite overwhelmed by people on this site. When I put the post out I was quite angry and feeling pretty useless and I must admit there was a moment that I thought it was wrong for me to have posted it. But sometimes sharing things really does help.
So sorry to hear of your loss. It is not easy but I am sure she knew how much you cared. You may not have been there in body but you most certainly were in each others thoughts.
I did one of those things with my post that actually was act in haste repent at leisure. I am not sorry I put out the post but I didn't really think about how it could upset people, the point being is I didn't actually think at all. I hate my condition too but on a normal day I find ways to deal with it. I am sending you a hug.
Denise xx
A fighter can't stop right, I'm a woman and I had to ask myself what feels great. If you need to laugh, I put on 👠👠 being stubborn with ataxia; only to get so far and feel down I couldn't walk. Being young seems no worries, never giving up is a chance. I got a Vagus Nerve Stimulator, I'm 80% better but feel 100% more of the time.
You are right a fighter cannot stop and I am still constantly breaking down but I am not going to give up. My mind tells me that we do have a fight on our hands and we have to work on every aspect, I have talked more in the last few days than I have in the last year and I have neglected my walking so it has go worse. To keep ourselves going we have to set ourselves tasks. I have not stopped crying yet and have not even made it to Wales yet, but I have no plans on giving up!
I'm so sorry for your loss. I know how frustrating Ataxia is, and this will have really brought it home to you. However, I'm sure you were in her thoughts, and it sounds like you had a close relationship. Treasure your memories.
I'm glad that your sister is being so understanding. And how wonderful that your mum was so organized and wrote down exactly what she wanted for her funeral
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Have a great weekend
Awaiting a diagnosis 
