i'll start off by saying that i am 21 years old and my mother was diagnosed when i was about 11 years old. we noticed something off when we went for a bike ride together and she didn't even get out of the driveway and fell off the bike. she had a cut or something on her head. im not sure. i just know that she was bleeding a little. she is 49 years old right not and still determined to fight this and not let it get the best of her.
ever since she was diagnosed, things progressively got worse. she loses her balance so often that she falls pretty frequently and has hurt herself pretty good on some of those falls. she still lives at home by herself. but her boyfriend lives next door and he frequently comes over to help her out. my grandmother is always helping my mom out. the hardest change for her was when she finally sold her car last year. up until this point she was still driving.
i have read that the life expectancy is 50 years and my mother is approaching that which is a scary thing to me. me and my mom have been through so much these past years. some positive and some negative. my mom wants to be treated as an equal and for people to not look at her differently but people do. people are cruel. i remember growing up and getting teased in school that my mom is the one that walks and talks funny. kids dont know any better but it still hurts.
sometimes i feel like i've lost my mom because shes changed so much. and i hate saying it and i hate feeling it. this is one of those sad situations that is difficult for everybody that is involved. this thing scares me. but her stubbornness is admirable because she refuses to let this control her as much as she can help. i live an hour away from her which is difficult as well.
this past easter just having family dinner was enough to make her super tired. growing up was hard because it was just my mom and me. and i did a lot of stupid things as a kid. i didnt understand any of this or what was really going on with my mom. nobody ever explained anything. they just told me that her brain was shrinking and left it at that. recently i started doing my own research on it which scares me a little bit more about the whole thing.
my mom and i fought a lot growing up. we both had violent outbursts towards each other. she was depressed a lot of the time. and i could kick myself for not being better when i was a kid. i tell her that i love her and its hard because thats all i can really say or do is to say i love you, its not your fault.
im sharing my story for others that are in either my moms or my shoes. life is all about perspectives, there is always more than one way to look at things. in a situation like this, all you can really do is be hopeful and positive and enjoy the time that you have together. Below is a picture of my grandmother, my mom, me and my daughter. good luck to everyone that has been effected by this. and i pray that one day, there is a cure for this.
so sorry to hear of your mom's ataxia. you are sorry for past problems. now is the time for you to move on. just be there to help when you can. as far as i know there is no life expectancy age. i am way over 50 and my dad died in his 70s. don't let fear ruin your life. i can tell things will be good for your mom with a daughter like you.
Amanda, I can totally understand as I have gone through 3 years of my wife’s symptom developments. And I see how it effects my daughter & son. Is your Mom’s ataxia genetic? Has she had genetic blood tests? Spinal taps, brain scans? I see that you live in PA. If she has no genetic markers, spinal/brain tumor, and if no atrophy (shrinkage) of her cerebellum then I highly suggest that she get tested by a Lyme Literare Doctor. Imbalance, dizzyness, speech problems, loss of muscle coordination, joint pain, muscle numbness, ringing in ears, are all symptoms of Lyme’s. if you can watch the movie "under our skin"
Hello, what a lovely family pic. I don't know about 50 life expectancy. I am 64 so that knocks the 50 years on the head. I can understand your mum wanting to be independent. for as long as she can. In the years to come she will need you more and more. Maybe you should ask her about a wheelie Walker to help her to walk without falling. .I don't know if you know but the walker has 4 wheals and you hold onto the handles as you push it around. I also have a 4wheel pavement scooter to get me out and about. I used to drive once but I had to stop as I couldn't feel the brake pedal anymore. I wish you, your mum and your nan the best for the future. Take care.
Hi, I can totally relate to how you feel. My Dad had ataxia and we didnt always get on. Me and my elder brother always resented him for being miserable, snappy and on occasions violent to our mum. Needless to say this all happened early on in their marraige and he just ploded miserably on with life and to be really honest we didnt give him much of our time. They married young (dad 19 and mum16) in 1969 but no matter how much they argued and didnt speak to one another they refused to split. Dad was diagnosed in 2009 and didnt progress too badly, he’d never had symptoms before but his speach went and Dr’s thought he’d had a mild stroke. Then not long after diagnosis he fell and broke his hip, this was the turning point and he went down hill very fast. My brother and me felt confused beacause of the bad feelings we had for him but also love as he was our dad after all and he never left us as kids. We went straight to hospital where we were told he would not survive the op but he had to have it done. We were devastated. I rang the hospital to see how the op went fearing the worst but dad was sitting up eating toast!!! We learned a lot from dads long lost brother how they were physically and mentally abused and neglected as kids so this somehow made us see dad in a different light and the most loving, gental, happy and kind man emerged. He would cry for hours saying sorry to us all for the way he treated mum but none of it mattered anymore, we all did a lot of forgiving and got to have the ‘real’ dad for the next three years. He left a happy man and I miss him so much it hurts but am so glad we got the chance to have that with him. Our pasts dont matter, its the now you should embrace and enjoy with your lovely mum. I wish you both all the best.xx
Bless you Gail. Couldn’t have said it better myself! I try to keep all that in mind when my wife vents on me. I am her and she is me and the line between is not clear
My name is Jim and I have had cerebellar ataxia for nearly ten years now. I have tons of problems like everyone else with this terrible disease. I too choose to be positive.
The bottom line is that I too have fallen more than fifty times, but I found that my walker/rollator has kept me upright (usually). I went from a cane to a walker /rollator to a wheelchair for long distances.
I have a long story to tell but I mostly wanted to tell you and your Mom and anyone else that cares to listen about something that I originally learned from Allen Thomas and I am currently pursuing a vest of my own for help with balance, someone would likely have to jump through a bunch of hoops and it’s not cheap but they are nice and caring people but I am personally looking forward to trying one and it just may help your Mom out. Good luck… I hope that the link below works…
i dont know much about it. all i know is a name. i dont know the specifics. my gram always told me growing up that her fredericks ataxia was triggered by severe head trauma because my dad was abusive. theyve been divorced since i was like 3. she has a good man with her now though. he takes care of her and loves her regardless and tries what he can to help her. i wanted to buy my mom a scooter last year but she didnt want anything to do with it because shes stubborn in not wanting much help. but now she kind of needs it. she goes to johns hopkins for her neurologist.
balance wear seems like a really neat idea that i am anxious to share with my mom. thank you. my only concern is her health insurance. she has state insurance. which the state is cruel and keeps cutting everything on her. she hasnt worked in maybe 6 years and has been on disability since. she gets 100.00 a month in food stamps which is a little ridiculous. im not sure if the state insurance would be able to help with something like that or who i should talk to about it. my mom is pretty stubborn about these things. lol i definitely want to show my mom some of these stories so she can feel less alone about it all. she doesnt have internet and doesnt do computers and neither does my gram. so if anybody would like to help me out with that, thatd be great. i can print them out and put them in a book or something for my mom to read.
I was diagnosed in 1988 and was told that I would probably be dead in 10 years. This is not coming from the grave so THEY were wrong. I gave up driving in 1989 and started using a cane. I progressed to one Canadian crutch, then two and in 1994 a wheelchair.I got married in 1991 and bought a home in 1995 and belong to a motorcycle association and ride in a sidecar. So, as you see, my life is NOT over because of ataxia. I am 52 years old and enjoying life more than I ever have before! Far from dying FROM ataxia I am LIVING with ataxia. Although our bodies are failing our attitude makes all the difference in how we live. Love your Mom. And let her know how important and viable a woman she is. Best wishes to you and your Mom
Dear Amanda, You sound like a very loving, caring daughter! Cut yourself some slack for the way you acted during your younger years, as being a teenager brings it's own set of ups and downs! Anyway, I was diagnosed with ataxia 10 years ago, at the age of 49. Although ataxia is extremely frustrating and challenging, it helps me to have a positive attitude. Exercising for strength and balance, as well as eating as healthy as possible helps too. I have a BalanceWear vest which is helpful. I don't know what kind of ataxia your mom has and why she was told she'd only live until 50 years old. There are different degrees and types of ataxia for different reasons, some hereditary, some not. My best to you...,:o)
I have Cerebellar Ataxia too. I was diagnosed about 6 years ago.The progression has been rapid .I also have a daughter of 24.When I was a teenager and throughout my early 20's my father had early onset Parkinsons so I know what it is like to be a carer.
As a mum and sufferer of Ataxia it is my dignity and pride which has gone.Although lots of things can help with our physical needs it is our self esteem which struggles now. That is where you can help.Build up her confidence.
The physical part of her may struggle a bit but remember there is more to her than purely physical.There is a lot you can do.I remember feeling powerless but this is not the case.
Hi Rose, can you tell me about your Balancewear vest please? I haven't heard of one before.
rose said:
Dear Amanda, You sound like a very loving, caring daughter! Cut yourself some slack for the way you acted during your younger years, as being a teenager brings it's own set of ups and downs! Anyway, I was diagnosed with ataxia 10 years ago, at the age of 49. Although ataxia is extremely frustrating and challenging, it helps me to have a positive attitude. Exercising for strength and balance, as well as eating as healthy as possible helps too. I have a BalanceWear vest which is helpful. I don't know what kind of ataxia your mom has and why she was told she'd only live until 50 years old. There are different degrees and types of ataxia for different reasons, some hereditary, some not. My best to you...,:o)
my mom has degeneration of the cerebellum which is not hereditary. it is believed to have been caused by a concussion when she got into a severe accident. shes been in multiple. i talked to my gram a bit ago and she seems excited about the balance wear. and i also found an ataxia support group thats in the area.
Thank you so much for your story and your willingness to share the hard stuff! I love the picture, too! It's really interesting to hear your side of the story, I was 29 when I got cerebellar ataxia (from a virus, they think) and I always wondered what life was like for my children, who were 6 weeks and 2 years old at the time. I am 53, and they are 23 and 25. I have been curious about a life expectancy, but I'm glad now that they never told me if there was one, it makes me live like life isn't going to end soon. I walk with a cane, and that's working well for now. Just stay close to your mom, your love and support means the world to her I'm sure.
Amanda, I am 70 and have only had ataxia symptoms the past 2 1/2 years. In the last year and a half I've deteriorated from a cane to using a rollator (4 wheeled)walker exclusively. Using the walker keeps me from falling--I've fallen 2 times in the past week because I tried to get around short distances without it. Most people don't know why I use the walker--even tho I tell anyone who will listen about ataxia. Not falling and just seeming like an old person who needs help walking seems less embarrassing for me--even tho I don't appear so old. This is a very frustrating condition. You don't like to depend on others for simple things you used to do and it takes a lot of patience to sit back and watch while someone else does things. And one does get tired doing the simplest tasks. My husband has been diagnosed with colon cancer and we know he will be having some sort of surgery and possibly chemo. My big concern is that I don't drive any more and how will we get 25 miles one way for treatments. My daughter is coming tomorrow from Houston to help me and while I need so much help I keep thinkig I hate to ask her to do this or that chore.
One thing I wanted to tell you. Don't feel too bad over things that happened when you were younger. My kids' dad died when the youngest daughter was in high school. I never thought she was too bad but she was more trouble to me than her older siblings. She has since apologized for giving me so much trouble then. So like some one said earlier, being a teen brings it's own set of problems even without a disease or disability involved. I hope your mother realizes how much you care for her. I also never heard of a "death sentence" for ataxians. Just take one day at a time and help your mom try to set things up so she can continue to do as much as possibe for herself and encourage her to find things she can do and enjoy. I use the internet a lot and crochet a lot. Some church friends have encouraged me to do things within my limits rather than feel left out when I can't help with more physical projects. It helps when others care enough to do this.
One thing my daughter wants to do while here is help me prepare meals and freeze them so I can pop something in the microwave or oven when we are housebound and I won't have to cook. I hate to admit it but cooking has gotten to be a real chore,and it is something I used to enjoy so much.
I have a way of rambling on, so hope you'll forgive that.
I was in my late 30’s when I had to watch my dad go through it so for you to be dealing with this since an 11 year old makes me wonder how on earth you have coped. Dont beat yourself up about how you were when you were younger, its hardly surprising considering what you have had to live with. I for one think you must be amazingly strong.xx
Hi Bron, I originally contacted the inventor of the vest, Cindy Gibson-Horn last year. I was then waiting for a physical therapist to be trained in BalanceWear in State. Eventually there was one 3 hours from my home I could see. Before I made appt., my husband and I attended the National Ataxia Foundation conference in March in Detroit, Michigan (I live in Michigan). Cindy was a speaker at the conference and a vest was offered at the silent auction. I won the vest, received an assessment from Cindy, and eventually received it. It's black lightweight material and 1/4 to 1/2 lb weights are velcroed inside, placed where I need them (I have three 1/4 lb and one 1/2 lb. The vest costs about $1000, but i got it for less due to the silent auction. It helps my balance, and my goal is to not use a cane eventually, if possible. I've taken some pretty bad falls (when not using my cane) and my confidence has been knocked down a peg each time. I attend physical therapy and wear my vest during these sessions. Apparently the vest helps some people and not others. If you need any more info., let me know. My best to you...,;o)
I had noticed that when I carried something heavy, I felt more stable, kind of like a boat that is anchored down so I believe that this vest could really help people.
I contacted them, but unfortunately, there is no one trained yet in my state (GA), but in August or September, may be in NC. So we will see…
For those interested ( at least in the US) get on www.motiontherapeutics.com for pricing and availability. Sorry, I do not know how to put a link in a post.
To Amanda: you are a very caring daughter. Just keep loving your Mom and do not feel guilty about your behavior during your teen age years. Most of us have done or said things we are not proud of. At that age, we do not always think before we act…
The picture you posted is a beautiful picture of 4 generations!
so I believe that this vest could really help people.