After Cassie's diagnosis my wife and I were in a state of shock, but after finding this site I feel like I have made so many friends and I would like to thank you all from the bottom of my heart. You are a very special lot dealing with a difficult situation
We all are dealing with as you say 'a difficult situation'. LWA is a great help to us with this.
I share your sentiment of thanks to all on LWA for the help, inspiration and friendship offered and for listening when we (I) rant on a bit!
I especially like engaging in the topics / threads on LWA forums. Some of the threads are 'day-to-day' stuff that help us understand each other. Other threads can be really interesting and varied in scope - such as the 'Great Idea' one currently doing the rounds.
Any way, I too would just like to say "Thanks all.".
the group here is very helpful, with their attitude as well as suggestions.my wife and i pray together each evening. you will be included. i too know how you feel with a diagnosis like that. i was told a month ago that i had sca3 and the dr said there was no treatment. i still have not dealt with my feelings and thoughts, so yes i do know what you are going thru. be assured of our prayer. Ive Fallen
Thanks for the kind words and the prayers. Your sense of humour made me laugh and you just made my day
Although still new to this forum, I would like to join you in thanking all the members of this wonderful site.
We are all different in age, size, color, background, country, taste, but we all connect easily because we share the same problem that no one can understand but us.
Thank you, friends, for being here, sharing your experiences and offering your help.
Agree!!! Thank you all. I used to feel so alone. Even though I don’t write daily, I do read.
Hi ladybug I had 2 breakdowns about 5 years ago and the best thing I was told was when you feel at your worst and think you may do something just try and get through to the next day and see what happens. I know the next day can take a while in coming but it does. Keep well
Well, my son says that the Google glasses do not communicate with the brain per se but have embedded within it (the glass)a tiny computer with which the person who wears the glasses, communicates. Much like a pilot. Similarly 2 neurologist-engineers, I emailed with today, say they do not know of the technology to make brain communication happen. BUT one prof did talk to me about a process known as "deep brain stimulation" which might be useful for those of you with a tremor. Has anyone done this? If you want more info on this write to me separately.
On a private note, I wish everyone relief. Last night I went to a concert... Verdi, Vivaldi, Copland. I was too busy worrying about my bladder and the intimidating stairs to really enjoy the music. N
Hi Punk - Where I grew up, there was this D.J. who would say on his radio show, “When you feel like you’re nearing the end of your rope, tie a knot, don’t say damn; say double-whammy-wo; and remember: there ain’t nobody BAAAD like you.”
It was ages ago, but I still remember it today. It helps put things in perspective, and this quote seems to do the trick - plus, a reminder never hurts 
I share your sentiments, Punk! This is a fantastic site, full of wonderful people who understand the in's and out's of ataxia! Everyone has been so supportive! As others have expressed, it has helped to feel less "alone" in this journey! There may not be a "cure" for ataxia, but we have each other to "vent/rant" with, as well as share advice etc. We even laugh together, which is so important...,ha! Thanks to all from the bottom and top of my heart! Rose ;o)
beautifully said
Honestly, I dont see what there is to laugh about. This is a serious illness and no one seems to know how to deal with it. N
rose said:
I share your sentiments, Punk! This is a fantastic site, full of wonderful people who understand the in's and out's of ataxia! Everyone has been so supportive! As others have expressed, it has helped to feel less "alone" in this journey! There may not be a "cure" for ataxia, but we have each other to "vent/rant" with, as well as share advice etc. We even laugh together, which is so important...,ha! Thanks to all from the bottom and top of my heart! Rose ;o)
Neta, we have a saying that says “laughing is the best medicine”. There is humor in everything if you look for it. We still can joke about our illness. I have two rare diseases and yet, I still laugh and I am usually the one making the others laugh.
I agree that ataxia per se is no laughing matter, far from it, but it can lead to laughter. Not too long ago, I meant to gently pat my husband face to thank him for something, and I ended practically slapping his face as the ataxia took over my hand movement. We had a good laugh about it. Or you should see my husband and I trying to put my earrings on…really comical.Yes, I do get angry sometimes, and also cry as I am sure we all do, but as they say “it is what it is” and we have to accept what is given to us and make the best of it if we cannot change it.
So, Neta, hang in there and keep smiling…
Beautifully said Rose! I feel the same as Rose. She took my words. LOL
rose said:
I share your sentiments, Punk! This is a fantastic site, full of wonderful people who understand the in's and out's of ataxia! Everyone has been so supportive! As others have expressed, it has helped to feel less "alone" in this journey! There may not be a "cure" for ataxia, but we have each other to "vent/rant" with, as well as share advice etc. We even laugh together, which is so important...,ha! Thanks to all from the bottom and top of my heart! Rose ;o)
It really is hard to deal with something that has no cure and trying to find a cure is a big ask. Treatment in the future would be great ,just look at aids and certain cancers . With treatment you can live with these diseases, then try and find a cure. I still do have a lot of optimism but have my dark moments. Having this forum is just the best thing, with all of you
Thanks Lori! ;o) I see you have another new pic? How nice...
I am finding my closest friends have taken the trouble to find out what Sensory Ataxia means and are doing everything they can to help me, but really this site is a wonderful place to share all the doubts and fears that arise from day to day. Some people are very disinclined in my life to get involved. One "friend" has completely dropped me - I am too much of a problem to go out with. But that's life and the best people - my husband and close friends all support me and make me feel "normal". It hurts dreadfully when people are dismissive or even aggressive, but the thing to do is just to ignore them and remember that this site exists to share experiences with similar people. May God bless all of you out there struggling like me. By the way how do we go about getting a card that explains to authorities what we have wrong with us. I am carrying a doctor's letter around with me in case the police stop me as I stagger into my car!
Hello lisa I know the west of Scotland branch have cards that say I am not drunk I have ataxia. So maybe get in touch with ataxia uk
Dear Lisa, TRUE friends look past your disability and want to help in any way they can. Ataxia doesn't define who you are as a person. You're so right, the best people in our life are the ones that make us feel "normal". I also have a wonderful husband, family and friends that are supportive and understanding. Also, I live in the US and carry a card from the National Ataxia Foundation ((NAF). It reads on the front, Ataxia is a progressive neurological disease that impairs balance, coordination and speech. Due to balance issues and slurred speech caused by ataxia, a person with ataxia may appear drunk-like. If you would like more information, and/or would like to make tax-deductible donation, please contact: National Ataxia Foundation (763)■■■■■■■■ Web: www.ataxia.org E-mail: ■■■■■■■■■■■■■■ On the back it says: Name:, Type of Ataxia:, Physician's Name & Phone #:, Emergency Contact:, You (or someone on your behalf) fills this information in. You can contact NAF through their site, and request that they send a card to you. Up until receiving their card, I carried a business card from my speech therapist. She had written pertinent details regarding my ataxia on back. Of course, depending on where you live, the protocol may be different. Just trying to be helpful...,;o)
This site has been a great source of comfort, information, and yes, a few laughs. Thanks for sharing Punk!
Stay strong everyone!