A bit confussed as to where everyone is. I have signed in to maybe chat or read something someone may have added. I see many members but I see no one using this sight for communicating.
Just so you know. All is well for me and yes I still have ataxia and yes it follows me everywhere. Do I mind? Sure do.........but hey. IT'S NOT THE END OF THE WORLD. All I noticed is I'VE CHANGED HOW I LIVE AND I CAN SAY THAT FOR SURE NOW PEOPLE HAVE TO JUST BE PATIENT AND WAIT. I no longerwill rush to do things. As I have said before. iT is what it is.
Anyway I guess if no one is here.........what I have to say is unimportant. I had a great day with a friend that came visiting. She spent 2 hrs chating and sitting outside enjoying the sun.
Hmmm.........will close and find myself something to do I guess.
Vickie,
Many of the folks on this site are in the UK, so they’re on a different time zone or two from you and I. I’ve learned to do my checking here early in the day.
I’m so glad you had a great day! It’s good to keep those friendships in good shape!
Take care Vickie!
I laughed - I was going to write something similar: "Has everyone gone on holiday or something?" :-)
Yes, it's been a little quiet lately, compared to recent weeks, though some seem to be replying to older posts. Mind you, with all the sunny weather in the UK, others are busy sunbathing too?
Glad to hear you're enjoying the weather too. I have - it's helped cheer me up a bit, as I've been a bit down lately - so near, yet so far from getting an actual diagnosis - I'm pretty certain what it is now, but waiting for tests to prove it's this and not the other few possibles left, and so finally get a formal diagnosis. Onto Neuro No.10 (Doctor No. 30 or so and counting)..... But yes, you're right, it is what it is, and we just have to make the most of it! :-)
Hi Vickie, my excuse is that my computer burnt out and having bought a new one, I have been completely absorbed in the changeover. Yes I do things very slowly too!!
It's nice to get new things but oh how frustrating learning how to use them.. nothing seems to be the same.. I don't enjoy replacing old things like I used to.
Being able to sign in with facebook is a boon.
I have appointment with neurologist next month - haven't seen her for almost 3 years - I'm determined to say no to any more testing but I may well give in when it comes to it.
Hi Vickie. Like Julie said some people are from the UK and there time zone is different. I email a friend in the UK. And when I get up theirs an email. My excuse is I have a family with kids and they need my help. Some people work. This site is booming early in the morning and sometimes at night. Everyone here cares. Were all friends even when we say dumb things.LOL (like me) Or were sitting outside enjoying summer! We do care!
I am a new member as well, and I was ready to give this sight the hair flip! I restyled get any one to answer and it seems that rarely is anybody on line . But , you can read my posts… Hi and welcome
Hi Vickie - I’ve personally been working on some of my goals, but for those who have kids, it’s a busy time with kids getting out of school, summer vacas, graduations, etc.
I would think that there will be more activity soon.
Hi Vickie, my excuse is that my computer burnt out and having bought a new one, I have been completely absorbed in the changeover. Yes I do things very slowly too!!
It's nice to get new things but oh how frustrating learning how to use them.. nothing seems to be the same.. I don't enjoy replacing old things like I used to.
Being able to sign in with facebook is a boon.
I have appointment with neurologist next month - haven't seen her for almost 3 years - I'm determined to say no to any more testing but I may well give in when it comes to it.
Hi Vickie, I live in the US, and check this site, as well as my emails, at various times of the day/evening. It depends on what's going on in my day. I laughed when I read your post as your post saying you still had ataxia and it followed you everywhere...,ha! I agree with you 100%, as it certainly does with me also! I too move slowly and I don't/can't rush to do anything anymore! What you say is VERY important, as well as relevant to ataxia! Glad you had such a good visit with your friend, sitting outside in the sunshine and chatting! Sounds as though the weather was lovely! I'm always up for a chat..., ;o)
Hey there are people out there. Thank you for mentioning the difference in time zones. I totally forgot about that. Apreciate the reminder. Glad to see some reply's. I felt very alone when no one replied.
I had a question to ask if someone could give me some what of an answer. I have had many ask what the span of life is for those with Ataxia. My answer is when the good Lord is ready for me. Is there such a span? How does one know?
My doctor says you do not die from having my kind of ataxia. Now my father had ataxia. And he fell because of the ataxia. And punctured a lung. Then he died. So ataxia did kill him. But in a different way. My answer would be. The same as yours. When the good Lord is ready for me.
I kept thinking I'd had my chips then on holiday for a week in Devon I did some serious thinking.
I think you have the right attitude Vickie.We never know when our time is up.Just because we have Ataxia it doesn't mean the end.We may be useful ton someone;you never know.Meanwhile we have to finish the race.
I kept thinking I'd had my chips then on holiday for a week in Devon I did some serious thinking.
I think you have the right attitude Vickie.We never know when our time is up.Just because we have Ataxia it doesn't mean the end.We may be useful ton someone;you never know.Meanwhile we have to finish the race.
I'm no expert, but from what I've read, ones "prognosis" depends on the type and degree of ataxia they have. Of course, so little is known about different ataxia's, it's not written in stone! It also can depend on the progression of ataxia and/or whether the type is known (I was diagnosed with Sporadic/Idiopathic Cerebellar Ataxia 10 years ago. It was late-onset, at 49 years. I'm 59 now. My neurologist has no idea why I have it, as no one in my family, as far back as we know, has/had ataxia. Plus, genetic tests for the know recessive types of ataxia were negative. It's progressing, albeit slowly). I feel as though the future is so uncertain anyway, I'm not going to waste valuable time lamenting about it! It's out of my hands. Yes, I will continue to exercise for strength and balance, and eat healthy, but, I agree, God will make the final decision! ;o)
I’m no expert, but from what I’ve read, ones “prognosis” depends on the type and degree of ataxia they have. Of course, so little is known about different ataxia’s, it’s not written in stone! It also can depend on the progression of ataxia and/or whether the type is known (I was diagnosed with Sporadic/Idiopathic Cerebellar Ataxia 10 years ago. It was late-onset, at 49 years. I’m 59 now. My neurologist has no idea why I have it, as no one in my family, as far back as we know, has/had ataxia. Plus, genetic tests for the know recessive types of ataxia were negative. It’s progressing, albeit slowly). I feel as though the future is so uncertain anyway, I’m not going to waste valuable time lamenting about it! It’s out of my hands. Yes, I will continue to exercise for strength and balance, and eat healthy, but, I agree, God will make the final decision! ;o)
I have EA2 also. Told my doctor that I joined a support group and he asked if anyone else has EA2. Mentioned to him that everyone on the site is dealing with some type of ataxia and it is very helpful and informative.
What do you do for your EA2? I have to remind myself to take things slow and stop trying to do so much and stop rushing.
Folky said:
hi Vickie,i have episodic ataxia type 2,and I generally walk slow and don't rush for anything,even when im attack free.i wont even rush to get the bus,if im late,i'll just wait for the next one...as I keep saying to my wife,when she rushes for something...people who do things quickly will end up giving themselves a heart attack......slow is better.......
I'd love to schedule a chat with you. I'm in USA so maybe we can find a time in the am on Friday's that will work for everyone. You could start a group doing it here regularly! Great I'm game to do that with you so we can have a weekly chat here! I think that will be fun! Message me here too anytime you want ok?!
What is your time zone?
Well I googled it and I think it's 8 hours difference from London to here. London is later than here.
6pm there when it's 10am here. What's good for you to chat? I can do Thursday or Friday mornings here from the USA PST say 9 ish? will that work?
Jeannie..................I live in the US myself I think when it is 8:00am here (Central Time) It is 9:00am your Standard time. This next Friday I will Try to remember to be on here to chat with you. If that works for you or anyone else. Remind me with a message on thurs night please and I will reply bace to you.