Hello everyone I have not posted anything in a while, so just a wee update. I reckon Cassie has had sca2 for about 3 to 4 years and was diagnosed when she was 21. Her way of dealing with this is to have as little information as possible about sca and just enjoying her life. She knows its serious but how serious I don't know. People may think in this day and age with the internet that how can someone not know how serious her condition is, But I admire her for it. I guess she doesn't want to know so we just leave it. Cassie is very happy at the moment and maybe there will come a time when she decides she wants to investigate more, that's up to her. I think her happiness is more important at this moment than being 22 and worried all the time.
She was at the Southern General in Glasgow on Monday and was told that there doesn't seem to be any difference in the last year, so she's not to go back for another year. Her balance is off but doesn't really show any other signs, and was told her strength is good. She will be 23 in June and is still working and going holidays with her pals. I love her so much.
Your daughter has found the best way for herself to deal with her ataxia. For some people, ignorance is bliss, and the less they know the better off they are. Others need to know as much as possible ( I am one of those), but I must admit it is not always a good idea as sometimes you discover things you would rather think about…
The main thing is that your daughter is enjoying life, has a great attitude and very supportive parents.
Dear Punk, Good to see you back on this site! Glad to hear your daughter Cassie is doing so well! She sounds as though she's enjoying her life and has a positive attitude! I can tell you are a very loving, caring parent and I'm certain your support makes all the difference! ;o)
Thanks everyone. Cassie's boyfriend of 7 years dumped her after going to see about a mortgage and viewing houses. After viewing one house he just told her in the car. So it was hard trying to pick her back up again, but wee got there. This was November, and she's doing great. She is going out on her 1st date tonight with someone new. You are all Brilliant and its good to come on and let off steam.
I am truly glad to hear "good" news re Cassie. I am in NYC at the moment where its cold. A cure would be nice. Cassie is too young to be hampered by all of this, but she has the right attitude. Last night we saw a documentary film on Tanquil ("Tanny") Le Clerc, the great NYCB ballerina who was stricken with polio at 27 and never walked or danced again. She was initially angry, stunned and depressed when she was diagnosed but eventually shemadepeace with her cruel fate.
Of course Balanchine, the so called ballet genius( but moral ant) who was formerley smitten with her, (she was wife #4) could not remain more than 2 years by her side. He tried to get her to walk. He didn't and he and Tanny divorced. Despite the age gap, he then pursued another great ballerina named Suzanne Farrell but to no avail. Suzannne eventually married someone else. Tanny, it seems had love affairs,post-illness and became a dance teacher and lived till 80--way past B. I learned alot from the film, which was shown at Lincoln Center in NYC. Try to see it if it comes your way. Men or women can be moral giants or ants. It's often hard to predict who will be the righteous soul of the group. But he's somewhere. N
There is a lot to be said for the sweet lass . Age makes a difference too. No buckling under for this gem.. .......................Hugs, .....Granny Elena
Hello Steve, Cassie doesn't get cramps yet and as I say the only visible sign is that she is a bit unsteady when turning but she is fine walking and she has a slight tremor. Everything else seems fine including speech. There is no family history of sca2 so the doctors think it may be a rogue gene or something. If it is I am hoping it has a lengthy course. Another thing with me is that I do think they will come up with treatment in maybe 5 to 10 years. Maybe its blind hope, I don't no. Ann and I give to ataxia UK every month and we even have a small change jar. We give monthly to cancer research because of my son Gary, that's all we can do.
Thanks Mary Elena the sweet lass sounds very scots and I love seeing it in print. Also love the words lassie and the word aye for yes.
Great to here from you Neta, I have taken a note of the documentary and I will be sure to watch it. I watch a lot of docs of different kinds. I tend to judge people by their morals and not their status. There are a lot of giants out there including politician's and multi nationals who have no morals, hence I am a member of change org and avaaz, just to try and kick back a bit. Always great to hear your wise words. On a different theme Neta you may be interested in a book I read years ago called Dawn of the promised land [The creation of Israel] by Ben Wicks. Brilliant book
Thanks for the remarks. I will try ad pick up the book. I am glad Cassie's mood is good. Yes, moral giants can be anywhere, in the most unexpected areas. I once had a maid from the Phillipines who told me that she put her niece and nephew through nursing school and bought her mom a house!! In my family no one helps anyone. Rule no. one. What is avazz?
Punk said:
Hello Steve, Cassie doesn't get cramps yet and as I say the only visible sign is that she is a bit unsteady when turning but she is fine walking and she has a slight tremor. Everything else seems fine including speech. There is no family history of sca2 so the doctors think it may be a rogue gene or something. If it is I am hoping it has a lengthy course. Another thing with me is that I do think they will come up with treatment in maybe 5 to 10 years. Maybe its blind hope, I don't no. Ann and I give to ataxia UK every month and we even have a small change jar. We give monthly to cancer research because of my son Gary, that's all we can do.
Thanks Mary Elena the sweet lass sounds very scots and I love seeing it in print. Also love the words lassie and the word aye for yes.
Great to here from you Neta, I have taken a note of the documentary and I will be sure to watch it. I watch a lot of docs of different kinds. I tend to judge people by their morals and not their status. There are a lot of giants out there including politician's and multi nationals who have no morals, hence I am a member of change org and avaaz, just to try and kick back a bit. Always great to hear your wise words. On a different theme Neta you may be interested in a book I read years ago called Dawn of the promised land [The creation of Israel] by Ben Wicks. Brilliant book
Avaaz is similar to change org only its world wide. A lot of it is signing petitions to get governments to change their laws. like the case of an Afghanistan girl who was raped at 16 and the law states if the guy marries her he gets off with it. Sadly in this case the girl killed herself, very sad. Anyone can start a petition and become active if they like
Many countries have crazy laws, which brings me back to being a giant in society but having no morals or lacking empathy. This site is great because everyone can empathize with each other and sometimes that's all it takes.
Hi Punk!
I googled Change org and Avaaz. There are so many injustices.
Anyway, thanks for mentioning it, I signed a petition, and sent
someone a ‘heart’ and a message. xB