Hi Again Punk, I totally agree with you saying, "when I think it is a close relative, maybe they just don't want It to be happening to their loved one". I've had the same experiences with relatives that I'm close to. Sometimes, I just want/need to "vent" a bit, and they have a difficult time listening. They go into a "denial" mode, as they don't want to believe anything could be wrong with me. Therefore, I'm glad there's this site, as we all understand what's it like to deal with the frustrations and challenges of ataxia! Been there, done/doing that...,ha! Thank you for your well-wishes Punk! ;o)
Hi punk
I think its really important to keep fit and healthy especally at a young age, as this will give you a good fountation for later on. I,ve had sc ataxia from when i was a teenage, in a way i know what was coming, so i wanted to be prepared for what was coming in later life, i started cycling and then competing,which i was still doing up to when iwas 35, i done ju-jitsu for 10yrs reaching brown belt and doing everything around theese sports to keep at my peak,theese sports gave more than just fitness, they gave me goals strength, determination and most of all an atitude of never give up and always fight on. I'm 42 know still work PT and though i still cant ride two wheels,i'm still out on my reco trike. I believe my early fitness gave me a good foundation for where i am know
Hi Jason, I really admire your "drive" to keep yourself fit and healthy. It has really paid off for you! Best wishes..., ;o)
Hope you keep well Jason. Unfortunatlly not every young person is as motivated towards exercise like you are. I wish Cassie could be but she,s not, so i am still trying to find the right balance for her. I dont want to annoy her but at the same time she needs that bit of coaxing. She doesnt complain and has even stepped up her exercise. Her boyfriend got her a pup{ wee Buster} and this will encourage her to walk. Also it gives her something to focus on. Every morning i give her a kiss and she kisses the dog ha ha
Punk
I was just really lucky that i found a sport i loved and could do quite well. I think thats the hardest thing i find with ataxia is to find a balance, especally as the goal posts keep chanceing
Punk said:
Hope you keep well Jason. Unfortunatlly not every young person is as motivated towards exercise like you are. I wish Cassie could be but she,s not, so i am still trying to find the right balance for her. I dont want to annoy her but at the same time she needs that bit of coaxing. She doesnt complain and has even stepped up her exercise. Her boyfriend got her a pup{ wee Buster} and this will encourage her to walk. Also it gives her something to focus on. Every morning i give her a kiss and she kisses the dog ha ha
Punk
You keep going Jason and thanks alot for your input.
Punk
jason spencer said:
I was just really lucky that i found a sport i loved and could do quite well. I think thats the hardest thing i find with ataxia is to find a balance, especally as the goal posts keep chanceing
Punk said:Hope you keep well Jason. Unfortunatlly not every young person is as motivated towards exercise like you are. I wish Cassie could be but she,s not, so i am still trying to find the right balance for her. I dont want to annoy her but at the same time she needs that bit of coaxing. She doesnt complain and has even stepped up her exercise. Her boyfriend got her a pup{ wee Buster} and this will encourage her to walk. Also it gives her something to focus on. Every morning i give her a kiss and she kisses the dog ha ha
Punk
Hey Puck, My youngest adult daughter got a puppy 3 weeks ago. The puppy is somewhere between entertainment, tripping hazard and exercise for both of us. Hope you and Cassie enjoy your dog too.
It can be a hard transition when your kids become adults but it is especially hard when the kid has some extra challenges. I am the Mom of 3 twenty something year olds who live with special health and learning challenges -- the youngest was 17 when I had a stroke leading to my ataxia and other issues..
Ultimately I think we have to keep track that our job is not to get our kids to do any particular action, our job is to teach our kids to be responsible adults who make wise choices both now and in the future. It is up to us to support them in becoming as independent as possible. I know that keeping up the exercise could make a big difference in the future (and I am sure Cassie does too-- she is an adult) and if you want it to be sustained the trick is finding a way for the desire for the activity to come from within Cassie.
After that I think the support tends to be things like making the mechanics of it all easy as possible like helping with transportation, gym memberships for Christmas, guest passes for the boyfriend, healthy energy food easily available in your home and most of all you can set an example by being moderately active yourself.
Hi Linda, Your advice was wonderful! I have grown children myself and ataxia (unknown cause), I definitely agree to what you had to say, especially the last paragraph. Being a good roll model, as well as support system is so important! I just wanted you to know...;o)
Yea linda
The pup is a real handful but loads of fun and very loving. You sound as though you have had it realy hard too but you sound strong. I gave up smoking when my son got cancer 8 years ago and i gave up drinking 5 years ago, I only have a couple of drinks when i go see a punk band. I do 50km on the exercise bike a week and i walk plenty. We as a family have always talked about staying fit and my son goes hill walking in the highlands most weekends. My wife and i climbed the hidden valley in Glen Coe not so long ago and it was stunning. Here is a wee pick of Buster
Punk
Linda Cooper said:
Hey Puck, My youngest adult daughter got a puppy 3 weeks ago. The puppy is somewhere between entertainment, tripping hazard and exercise for both of us. Hope you and Cassie enjoy your dog too.
It can be a hard transition when your kids become adults but it is especially hard when the kid has some extra challenges. I am the Mom of 3 twenty something year olds who live with special health and learning challenges -- the youngest was 17 when I had a stroke leading to my ataxia and other issues..
Ultimately I think we have to keep track that our job is not to get our kids to do any particular action, our job is to teach our kids to be responsible adults who make wise choices both now and in the future. It is up to us to support them in becoming as independent as possible. I know that keeping up the exercise could make a big difference in the future (and I am sure Cassie does too-- she is an adult) and if you want it to be sustained the trick is finding a way for the desire for the activity to come from within Cassie.
After that I think the support tends to be things like making the mechanics of it all easy as possible like helping with transportation, gym memberships for Christmas, guest passes for the boyfriend, healthy energy food easily available in your home and most of all you can set an example by being moderately active yourself.
I think the more the better, I have SCA2 also and I am very active. I work out about 3-4 hours per day I either ride my recumbent bike or use the bike at the gym for 10 miles, a half hour of heavy cardio, a 3 mile jog or 3 mile walk on the treadmill, and hour and a half of weight training, a half-hour of stretching, and 30 min. using an Xbox Kinnect. I do all this on a rotational basis. I also volunteer a couple hours a day, and I'm active in the local Boy Scout troop.
Hi Jack i read about you before and was very impressed. I am tired just reading about what you do.
Did your symptoms start in 2007? Cassie still works part time and works out 1 hour a day.
Punk
Thank-you Rose.
I really appreciate your comment. Not easy parenting an adult is it? smile.
Linda
rose said:
Hi Linda, Your advice was wonderful! I have grown children myself and ataxia (unknown cause), I definitely agree to what you had to say, especially the last paragraph. Being a good roll model, as well as support system is so important! I just wanted you to know...;o)
Punk
Good to hear you have such an active and healthy lifestyle.
I was pretty active before I got sick but hardly what you would call fit. I am very slowed down now but my life includes regular walks near our house with family members. occasional attempts at easy hiking trails where I love to do photography. I participate in a weekly adapted swiming program and an adapted tai chi program every week as well. I am a Girl Guide leader with teenagers and I do what I can but sometimes I am more the organizer than the "doer' with the girls. I have even gone canoeing but my lopsided post stroke strength has me paddling in circles.
I am looking forward to lots of activity walking our puppy once he gets older and better on leash and when our sidewalks are not so icy.
Linda
Punk said:
Yea linda
The pup is a real handful but loads of fun and very loving. You sound as though you have had it realy hard too but you sound strong. I gave up smoking when my son got cancer 8 years ago and i gave up drinking 5 years ago, I only have a couple of drinks when i go see a punk band. I do 50km on the exercise bike a week and i walk plenty. We as a family have always talked about staying fit and my son goes hill walking in the highlands most weekends. My wife and i climbed the hidden valley in Glen Coe not so long ago and it was stunning. Here is a wee pick of BusterPunk
Linda Cooper said:Hey Puck, My youngest adult daughter got a puppy 3 weeks ago. The puppy is somewhere between entertainment, tripping hazard and exercise for both of us. Hope you and Cassie enjoy your dog too.
It can be a hard transition when your kids become adults but it is especially hard when the kid has some extra challenges. I am the Mom of 3 twenty something year olds who live with special health and learning challenges -- the youngest was 17 when I had a stroke leading to my ataxia and other issues..
Ultimately I think we have to keep track that our job is not to get our kids to do any particular action, our job is to teach our kids to be responsible adults who make wise choices both now and in the future. It is up to us to support them in becoming as independent as possible. I know that keeping up the exercise could make a big difference in the future (and I am sure Cassie does too-- she is an adult) and if you want it to be sustained the trick is finding a way for the desire for the activity to come from within Cassie.
After that I think the support tends to be things like making the mechanics of it all easy as possible like helping with transportation, gym memberships for Christmas, guest passes for the boyfriend, healthy energy food easily available in your home and most of all you can set an example by being moderately active yourself.
Yea Linda its freezing here too. I think thats why so many Scots went there so they could feel at home and be miserable at the same time ha ha. Me? i would have went to Barbados. You sound as though you have a very interesting life and the ataxia certainly does not define you.The photography sounds interesting too. You have good people around you and thats important. Hope you keep well Linda
Punk
Linda Cooper said:
417-ROTTEN6b3fjtz.jpg (55.2 KB)Punk
Good to hear you have such an active and healthy lifestyle.
I was pretty active before I got sick but hardly what you would call fit. I am very slowed down now but my life includes regular walks near our house with family members. occasional attempts at easy hiking trails where I love to do photography. I participate in a weekly adapted swiming program and an adapted tai chi program every week as well. I am a Girl Guide leader with teenagers and I do what I can but sometimes I am more the organizer than the "doer' with the girls. I have even gone canoeing but my lopsided post stroke strength has me paddling in circles.
I am looking forward to lots of activity walking our puppy once he gets older and better on leash and when our sidewalks are not so icy.
Linda
Punk said:Yea linda
The pup is a real handful but loads of fun and very loving. You sound as though you have had it realy hard too but you sound strong. I gave up smoking when my son got cancer 8 years ago and i gave up drinking 5 years ago, I only have a couple of drinks when i go see a punk band. I do 50km on the exercise bike a week and i walk plenty. We as a family have always talked about staying fit and my son goes hill walking in the highlands most weekends. My wife and i climbed the hidden valley in Glen Coe not so long ago and it was stunning. Here is a wee pick of BusterPunk
Linda Cooper said:Hey Puck, My youngest adult daughter got a puppy 3 weeks ago. The puppy is somewhere between entertainment, tripping hazard and exercise for both of us. Hope you and Cassie enjoy your dog too.
It can be a hard transition when your kids become adults but it is especially hard when the kid has some extra challenges. I am the Mom of 3 twenty something year olds who live with special health and learning challenges -- the youngest was 17 when I had a stroke leading to my ataxia and other issues..
Ultimately I think we have to keep track that our job is not to get our kids to do any particular action, our job is to teach our kids to be responsible adults who make wise choices both now and in the future. It is up to us to support them in becoming as independent as possible. I know that keeping up the exercise could make a big difference in the future (and I am sure Cassie does too-- she is an adult) and if you want it to be sustained the trick is finding a way for the desire for the activity to come from within Cassie.
After that I think the support tends to be things like making the mechanics of it all easy as possible like helping with transportation, gym memberships for Christmas, guest passes for the boyfriend, healthy energy food easily available in your home and most of all you can set an example by being moderately active yourself.
