Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in youlife and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
I haven’t been on this site long (about a week). I was diagnosed in July of this year with Ataxia, but still don’t know exactly which form. I will hopefully, know in January. It is a comfort to know I’m not going mad, as I recognise so many of my symptoms from those who have also shared. I was referred to a Neurologist by my GP, as my balance is so terrible. I have chronic ecsema in my ears & thought this was the cause of my unbalance. I passed out in the shower in 2013, giving myself a spiral fracture of the ankle. This made my imbalance worse, but as it was a break, thought nothing of it. The Neurologist found a small mass in my cerebellum, so have had a CT scan & MRI, as well as blood tests. Now we wait. I’ve also been diagnosed with depression & panic attacks for years. It has been difficult, as people tell me to pull myself together or they have that too & just get on with it. I fall alot now & my family now have a better understanding of what is going on… and what is still likely to come. I’ve lost friends & the man I adore, due to this & have gone from being someone who loved to dance, walk, draw to a person who can barely keep myself steady to stand. I try to exercise but get so tired & sore.
I pray for something to happen & for us all to receive a miracle soon.
Thanks for your time in reading this. Hope your day is a good one!
I'm so thankful for this site! I'm not on a lot but to know I'm not alone anymore and when I have a question it's answered! Being on this site gave me info that I didn't have by them also referring to ataxia.org and chatting with them! I can't put into words how important it is Not to feel alone anymore :)
I've had cerebellar ataxia,( Idiopathic,Late on-set ) for 9 yrs~ I'm now 62'..Any-one of the known causes could have happend to me so I don't bother any more except to avoid them at all costs,ie: Toxins,Alcohol and esp Opioid Pain Killers..
Weight control is a must and daily exercises which I do wearing Ear Phones so that my co-ordination is in a rhythmic pattern!
..I don't pray or believe in ANYTHING!..A cure will be found by dedicated scientists that explore Neural Path-Ways and also the production of 'Purkinje Cells' from Bone Marrow..
..Great hope,faith and imagination! I've got plenty of it...take care ya'll..Ozzy
I have hereditary SCA3. Both my grandmother and my mother had to deal with this not even knowing what it was. After my diagnosis I was able to continue working for some time before I had to retire early due to advancing symptoms… it was only a few months after I got done working that I decided it was time to find people like myself. After I joined Living with Ataxia I knew it was a good move. There were so many people with my symptoms and many more symptoms that I had never experienced as I learned more about the many faces of ataxia… I was appalled at how many were going through terrible times with no help available to them . I wrote a blog about how meds have helped me, but I guess I am one of the lucky ones as for many my meds are useless to them. Four months after joining Living with Ataxia, I was asked if I wanted to become a moderator. So now I feel even more helpful in that position as I help new members come on board and I learn more about the troubles of those with ataxia. So many of these members get little or no help from doctors that say that there is nothing they can do and send them out the door. This website is their only link to finding some answers to questions their Dr couldn’t even help them with. This the only place they can talk freely about their problems dealing with their ataxia, and hopefully get some good information as well. Thank you for making sure it’s available to us.
I haven't been on this site long (about a week). I was diagnosed in July of this year with Ataxia, but still don't know exactly which form. I will hopefully, know in January. It is a comfort to know I'm not going mad, as I recognise so many of my symptoms from those who have also shared. I was referred to a Neurologist by my GP, as my balance is so terrible. I have chronic ecsema in my ears & thought this was the cause of my unbalance. I passed out in the shower in 2013, giving myself a spiral fracture of the ankle. This made my imbalance worse, but as it was a break, thought nothing of it. The Neurologist found a small mass in my cerebellum, so have had a CT scan & MRI, as well as blood tests. Now we wait. I've also been diagnosed with depression & panic attacks for years. It has been difficult, as people tell me to pull myself together or they have that too & just get on with it. I fall alot now & my family now have a better understanding of what is going on... and what is still likely to come. I've lost friends & the man I adore, due to this & have gone from being someone who loved to dance, walk, draw to a person who can barely keep myself steady to stand. I try to exercise but get so tired & sore.
I pray for something to happen & for us all to receive a miracle soon.
Thanks for your time in reading this. Hope your day is a good one! :)
Hope & pray all you want but until someone of importance gets this horrible sickness,the rest of us are screwed! I've been to every kind of dr. there is and here I sit with another sleepless night and another day of hell! My wife is the one that has to suffer because of me.They say suicide is a cowards way out,sometimes I wish I was a coward. Ron
Aahhh..you again Ozzy. ALWAYS a delight to 'read' you:):) HUGE hug!
Ozzy said:
I've had cerebellar ataxia,( Idiopathic,Late on-set ) for 9 yrs~ I'm now 62'..Any-one of the known causes could have happend to me so I don't bother any more except to avoid them at all costs,ie: Toxins,Alcohol and esp Opioid Pain Killers..
Weight control is a must and daily exercises which I do wearing Ear Phones so that my co-ordination is in a rhythmic pattern!
..I don't pray or believe in ANYTHING!..A cure will be found by dedicated scientists that explore Neural Path-Ways and also the production of 'Purkinje Cells' from Bone Marrow..
..Great hope,faith and imagination! I've got plenty of it...take care ya'll..Ozzy
I am please to do this now as I think a lot of you think I am ignoring this but this is not correct. My contribution is very little because my English is not the first language for me. My mother tongue is Arabic. I hope you can understand my difficulty to share with you is the English.
My store with SCA have been started 4 years ago. I had my PhD in ( Biochemistry - Molecular genetics) from Southampton university in UK 2011 then I went to teach in university in Suadi Arabia and after 2 years only in Saudi Arabia I got the most difficulty from SCA and I could not contenuie teaching in the university. I am having a big difficulty in speech and waking. I had to get back to my orginal country _ Egypt_ to have a rest in the remaining part of my life. Untill now I am resting at my home in Egypt to waiting for my end>>>>>>>>>>>>>>>>>>>>>>.
Ben's Friends is very important to me. I get to hear from people who also have Ataxia, get their advice, etc. I got Ataxia in 2005 after having brain surgery for a rare neurological disorder called an AVM in my cerebellum. One of my deficits is another rare neurological disorder - ATAXIA! Aren't I lucky?? Like Ozzie I'm in my early 60's, I treat it with weight control, great nutrition and lot's of exercise. Low hanging fruit but hey! Whatever works- and this helps!
Ahmed- Your English is great! Sometimes I get depressed because I can't do all the things that I love, so I hear you. Especially when you're smart. After my "pity party" I focus on all the new things I do now. Rest is important but stay busy! Use that mind!!
Ahmed said:
I am please to do this now as I think a lot of you think I am ignoring this but this is not correct. My contribution is very little because my English is not the first language for me. My mother tongue is Arabic. I hope you can understand my difficulty to share with you is the English.
My store with SCA have been started 4 years ago. I had my PhD in ( Biochemistry - Molecular genetics) from Southampton university in UK 2011 then I went to teach in university in Suadi Arabia and after 2 years only in Saudi Arabia I got the most difficulty from SCA and I could not contenuie teaching in the university. I am having a big difficulty in speech and waking. I had to get back to my orginal country _ Egypt_ to have a rest in the remaining part of my life. Untill now I am resting at my home in Egypt to waiting for my end>>>>>>>>>>>>>>>>>>>>>>.
DON't even mention the s-word Ron. Erase it from your vocabulary. Life is a gift, whichever way it is TEACHING us to live it. And life/death are not to be separated i.e. BOTH a gift. Not something to be taken. Remember the 8th commandment: thou shalt not steal. It's THE commandment which stands for all actually. And, yes..ataxia is hard on spouses and others around us. BUT that is THEIR learning part. Look at life as a classroom: nice lessons there, boring ones, great teaches, horrible teaches. A class you HAVE to complete, no playing hooky! Don't want our souls/spirits in limbo do we now. Our body is just the house we live in, it is not WHO we are. Take care my friend, You can hide for a while but you will find yourself in the long run, I promise,
mibadge said:
Hope & pray all you want but until someone of importance gets this horrible sickness,the rest of us are screwed! I've been to every kind of dr. there is and here I sit with another sleepless night and another day of hell! My wife is the one that has to suffer because of me.They say suicide is a cowards way out,sometimes I wish I was a coward. Ron
I am 68 and I been reading living with Ataxia (Ben's friends for several years) and some times I fill that no body is doing anything for Ataxia Ben's friends helping me understand some off my symptoms, because the Doctors that I went and see they do not know to much about Ataxia, trey told me that there is no medicine to cure Ataxia, I was very active working and doing everything around the house, gong to the gym and today I do not do to much, only cook thing that are not hard to do with my husband help, he is 75 with parkinson but very strong and medicine that help him a lot. I am desperate to sit and rest all day
My faith wouldn't let me take my life,so don't concern your self regarding that.I'm having a really bad day (we all have them) but it sometimes helps to get mad and tell others that have the same problems.Thankyou for being there. Ron
I used to do most of the cooking because I enjoyed it and it was my way of giving back to my wife.Now she does all the cooking and everying else.I don't know what I'd do without her.There are all kinds of angles out there.
GOOD:):) My permission then to have a MAJOR rant! Hugs:)
mibadge said:
My faith wouldn't let me take my life,so don't concern your self regarding that.I'm having a really bad day (we all have them) but it sometimes helps to get mad and tell others that have the same problems.Thankyou for being there. Ron
GOOD:):) My permission then to have a MAJOR rant! Hugs:)
mibadge said:
My faith wouldn't let me take my life,so don't concern your self regarding that.I'm having a really bad day (we all have them) but it sometimes helps to get mad and tell others that have the same problems.Thankyou for being there. Ron
I live in Grand Rapids,Michigan USA and we have a re-hab hospital named Mary Free Bed for in and out patiens,google them sometime.I was an out patien 3 years ago and to this day I still use some the things I learned there.Because of them,I can still walk short distances on good days.Check out their site some time. Ron
my mother was dx with MS four years after having me in 1957. no one questioned her dx. in the 70's or 80s my cousin was dx with friedrichs ataxia along with 2 of his 3 children. they were dx with fr. ataxia. he died at 40, his kids died in their late 20s. then in the 80s my brother was dx with cerebellar degeneration. his oldest daughter was dx. with spinal cerebellar ataxia about 10 yrs. in 2001 i was dx with spinal cerebellar ataxia 2. wouldn't it seem that it was sca-2 all along. the symptoms are similar. hopefully science will improve and cure this monster.
As long as science has known about ataxia,you'd think they'd know more about it;maybe there isn't anybody that's famous enough that has it or it's not common enough.Someday......................maybe!!!!!!!!!!!!!!!!!!!
