Yes I do think everything that we do either hurts us (doesn't get us any further in life) or advances us into our future. Garbage in garbage out I think. That includes what I eat, listen to, watch, practice etc. Yes I believe we reap what we soe, meaning WE GET OUT OF WHAT WE PUT INTO THINGS. I know if I put garbage thoughts into my head by say watching the news's then it depresses me or it can subtly change my outlook and steel my joy and motivation to do anything to help myself. Not that I think my ataxia will be gone by doing everything that I do but I'm stopping it where it is now at least and know what I've got to deal with. If it reverses I'll be thrilled also. But actually life isn't bad. Thank you for this reminder. It helps me too plug along this new journey. Even through it's been since 2006 it still feels new! :0)
My husband kids me that I'm a HSP Highly sensitive person now! That's ok. I can now choose to feel better.
Storm said:
Hi Jeanie....thanks for the link to the doctor with ataxia....read with interest....will apply. Where there is life there is hope...if one wants something worthwhile one has to work at it. We are physical...emotional and spiritual.....that is a lot at our disposal don't you think Jeanie....Storm. Jeannie Ball said:
Hi Cynthia, I was diagnosed having ataxia in 2006. I freaked out for a while also. That's normal thing that I think we all do at first. I mourned my life and how I knew it to always be, so because of the unknown that's bothered me. Plus the fact that no one seemed to understand about it. Not even most of the Dr's.
So I found that I really had a choice to make. Weather I let the ataxia ruin my life or just realize it was a new chapter. I chose to gather as much information to help myself as I could possibly get on the internet, through books, meeting and talking with other's that also had ataxia at meetings to add more information. Also on social media like LWA, + AAN.
I got some good tips on how to manage things and saw somethings (to be honest with you) that made me think there has to be a way around this.
The information I focused on was how I could make my ataxia better. I just couldn't accept hearing from the Dr's that I couldn't do anything about it. In my heart I knew they were wrong. They don't know everything. I mean they are just human also I used to be a hair stylist and I did lot's of Dr's hair so being a hairstylist is like being a bartender, you get to hear allot. Trust me some things you don't want to hear! hahahaha
So I went gluten free at fist then all flours and refined sugars. Then additives etc. Anything I could possibly do to have some control of how I was able to manage this ataxia. So far I've been getting better and better. My cerebellum stoped degenerating with being conscience of the foods that I eat. I use my foods as meds. Most people think because food is easy to get and we do all the time that it can't be a med. Well they are wrong.
Like I keep telling my Nero when he tells me my MRI shows no more degeneration. I keep telling him that it stopped.He told me that a person can't stop the degeneration once it starts. I told him there is always a first time for everything! :0)
Being able to control this ataxia even a little bit like with foods, exercise, mediation etc. (physically, mentally and spiritually) is something that helps me since I have to have this ataxia. Now I really believe I got this ataxia for a reason. And I'm actually choose. I have a mission to do.
Why not since I have to have this right? I never was one before to look for the positive but getting a diagnosis like ataxia can change your life. It changed mine for the better. I sure appreciate little things so much more now. Now I have a gage! :0)
Please message me anytime if you'd like to chat. And please remember that we all get down from time to time. It's how long we want to stay there with it that matter's. It's our right to have choices! :0) :0)
I know that your right about exercising too helps get us out of any funk we find our self in. Myself, I find that Yoga stretches with a chair or out. Working on being just a bit better than I was yesterday. I was told yesterday in class from my instructor that the tightness we can get in the back of our legs effect our back and gives us more pain there. It makes since to stretch the legs out one at a time, but not stretch too far.50% of the time it helps over time. I know that I start to cramp up if I don't. I never knew that it actually could help as much as it does, I tend to forget sometimes or give it as much credit because it's not jumping around etc. She said she read this article that If you stretch a little each day your muscles will lengthen more and more each day. A little soreness the day after just means that I've gotten more oxygen in the muscle and it's repairing itself and I can push it a little more that day. Eventually it will be longer. It helps me with ache also on a daily basis.
displaymom said:
It's easy to wallow in your sadness , but think positively and surround yourself with positive people that helps me... Laugh and try and get some exercise ,... Good luck
I sent you a request and you should receive it in you email that you signed up with.
Jeannie
Cynthia said:
Thank you! Your words really helped me Id love to have you as a friend and being able to help you as well, I feel different now knowing that Im not alone on this... thank you!
Jeannie Ball said:
Hi Cynthia, I was diagnosed having ataxia in 2006. I freaked out for a while also. That's normal thing that I think we all do at first. I mourned my life and how I knew it to always be, so because of the unknown that's bothered me. Plus the fact that no one seemed to understand about it. Not even most of the Dr's.
So I found that I really had a choice to make. Weather I let the ataxia ruin my life or just realize it was a new chapter. I chose to gather as much information to help myself as I could possibly get on the internet, through books, meeting and talking with other's that also had ataxia at meetings to add more information. Also on social media like LWA, + AAN.
I got some good tips on how to manage things and saw somethings (to be honest with you) that made me think there has to be a way around this.
The information I focused on was how I could make my ataxia better. I just couldn't accept hearing from the Dr's that I couldn't do anything about it. In my heart I knew they were wrong. They don't know everything. I mean they are just human also I used to be a hair stylist and I did lot's of Dr's hair so being a hairstylist is like being a bartender, you get to hear allot. Trust me some things you don't want to hear! hahahaha
So I went gluten free at fist then all flours and refined sugars. Then additives etc. Anything I could possibly do to have some control of how I was able to manage this ataxia. So far I've been getting better and better. My cerebellum stoped degenerating with being conscience of the foods that I eat. I use my foods as meds. Most people think because food is easy to get and we do all the time that it can't be a med. Well they are wrong.
Like I keep telling my Nero when he tells me my MRI shows no more degeneration. I keep telling him that it stopped.He told me that a person can't stop the degeneration once it starts. I told him there is always a first time for everything! :0)
Being able to control this ataxia even a little bit like with foods, exercise, mediation etc. (physically, mentally and spiritually) is something that helps me since I have to have this ataxia. Now I really believe I got this ataxia for a reason. And I'm actually choose. I have a mission to do.
Why not since I have to have this right? I never was one before to look for the positive but getting a diagnosis like ataxia can change your life. It changed mine for the better. I sure appreciate little things so much more now. Now I have a gage! :0)
Please message me anytime if you'd like to chat. And please remember that we all get down from time to time. It's how long we want to stay there with it that matter's. It's our right to have choices! :0) :0)
My world is good days and bad days. Of course there's the anxiety too, plus the wheelchair, weak mussels..... Every day is your life, and it's made temporarily better or worse by other people.
Dear Cynthia, A huge welcome to you. This is a wonderful site for support and understanding! Ataxia is frustrating and challenging. Allow yourself to be vulnerable, as you're only human! I was diagnosed with ataxia 10 years ago, when I was 49, although I had small symptoms starting in my early 40's. I found it's a process to "accept" this, as it affects many aspects of your life (physically and mentally). Other's have given great advice! The only things I will add is concentrate on what you can still do, rather than what you can't. Try (although it's difficult) to have a positive attitude, as you can't control having ataxia, you CAN control your attitude about it. Keep as active (exercise for strength and balance is very important, every day) as possible, although rest when tired. As others have mentioned, think about talking with a professional, as I did, and they really helped me cope better. Eat as healthy as possible (Jeannie suggested using food as meds, I agree) and try to continue to do the things you enjoy, even though you have to do them in a different way. Try to live one day at a time, as none of us know what the future (or tomorrow) holds! It takes me extra effort to take a shower, get dressed and meet my friends for lunch. But, I just allow extra time for my slowness and continue to do it, as I enjoy it so much. I use a cane to prevent falls. I realize everyone's ataxia is different, with different types and degrees. Continue to do what you can, safely! I'll never give up or give in, as this is the hand I've been dealt with (and I'm stubborn that way...,ha!). My best to you..., ;o)
I’ve heard similar things from others - not necessarily a shrink, and I don’t get it. If in order to raise self-esteem to self-actualization, how is this not a great thing?
neta said:
Cynythia,
Remember a few simple points: Whatever you don't feel like doing, do, instead, like making supper or taking a walk.
Shrinks can be useful although mine is either a genius or a charlatan because he is delving into the past whic I dont think is relevant now. (He disagrees.). As a medical dr. he can and does issue meds to me which are helpful.
Do rest; why not? It's good for your body and your soul and will give you courage to face another day
Reward yourself periodically (often) by going to the beauty parlor or getting a manicure or going out for lunch or tea (even if u go alone.) or getting massages.
Read five newspaper articles aloud each day
I agree; it's depressing havng this but eventually you will forget/file your life before the CA , and this will make it easier.
Neurologists, it seems to me, will never argue with the hard facts of blood work or MRI's For instance, they, it seems, will never recommend change in diet or, say, accupuncture (which I have performed on me nonrtheless) unless a blood test says you are gluten sensitive. But based on the many comments here. you may be helped by a gluten-free diet. Try it for 1 month. I am; even tho my blood tests said I was not gluten sensitive. (A double edged sword because gluten is impt to people who are not senitive to it.)
Don't lose hope. You may (hopefully) live to see a cure. You are not alone--this is truly a curse. I am also in a bad mood most of the time, and very jealous of those who eat like pigs, never exercise, and even smoke! Good luck to you.
My shrink says not to visit this site too much (or ever), or to be in contact with any virtual people. You may "develop' what they have, (I don't necessarily agree.)N
This is one of many things that I’m working on: being consciously aware of the 90% of things that are going well and/or that I can do vs. the 10% of things that are horrible and/or that I can no longer do. I’m going for that whole perception shift, and this is one prong of it.
You sound like a very smart woman to even reach out for support. Good for you! This group is full of wonderfully supportive people. All of us go through this fear, hopelessness and frustration.
While I can't guarantee that your days ahead will be filled with sunshine and butterflies, I do know that having the support here will be crucial for you. Vent, rant, scream all you want....we can take it. :-)
I do these stretches every day before I get out of bed. They help me walk. I add a whole body stretch afterwards (my hands stretched over head and my feet stretching and pointing away also. Feels good. You can do variations of these too. Check them out http://www.veria.com/video/how-to-do-morning-stretches-in-bed/
Not sure what you mean. By 'this" you mean this website??
Glitter on Butterflies said:
I've heard similar things from others - not necessarily a shrink, and I don't get it. If in order to raise self-esteem to self-actualization, how is this not a great thing?
neta said:
Cynythia,
Remember a few simple points: Whatever you don't feel like doing, do, instead, like making supper or taking a walk.
Shrinks can be useful although mine is either a genius or a charlatan because he is delving into the past whic I dont think is relevant now. (He disagrees.). As a medical dr. he can and does issue meds to me which are helpful.
Do rest; why not? It's good for your body and your soul and will give you courage to face another day
Reward yourself periodically (often) by going to the beauty parlor or getting a manicure or going out for lunch or tea (even if u go alone.) or getting massages.
Read five newspaper articles aloud each day
I agree; it's depressing havng this but eventually you will forget/file your life before the CA , and this will make it easier.
Neurologists, it seems to me, will never argue with the hard facts of blood work or MRI's For instance, they, it seems, will never recommend change in diet or, say, accupuncture (which I have performed on me nonrtheless) unless a blood test says you are gluten sensitive. But based on the many comments here. you may be helped by a gluten-free diet. Try it for 1 month. I am; even tho my blood tests said I was not gluten sensitive. (A double edged sword because gluten is impt to people who are not senitive to it.)
Don't lose hope. You may (hopefully) live to see a cure. You are not alone--this is truly a curse. I am also in a bad mood most of the time, and very jealous of those who eat like pigs, never exercise, and even smoke! Good luck to you.
My shrink says not to visit this site too much (or ever), or to be in contact with any virtual people. You may "develop' what they have, (I don't necessarily agree.)N
It seems to me that shrinks are against this kind of site because you get better advice here and its free. shrinks and some docs carry a certain amount of arrogance. Unless you experience something like ataxia, despair etc you don't really understand it. You can read about it all you like in a book but can never fully understand it, also I think they lack empathy which is important to people on this site. Big hugs Cynthia
(I meant to send this to "Punk" and made a copy for him. But it is also relevant to you.)Everyone is coming from their own place. I guess shrinks only know how to do what they are trained to do.Explore the past. The money thing is problematic. I will give it a bit more time and then evalulate. I hate the dizziness and the hopelessness of it all.I would do anything, follow any lead, to get help. I shouldn't complain because I am better than most but still I am not what I was. But the shrink says that at this point I am (mentally) enlarging the problem. Regarding doctors, one neurologist suggested(when I said I felt better seated) "So sit!" "For the next twenty years?" I asked. She shrugged and back tracked a bit. "Do tai chi," she said. I think neuros are very science oriented. Medications, blood tests, MRI's--- those are the currencies of thir profession. I get the impression that the neuros think I am a bore and they have nothing to tell me. The shrink thinks I am spooked. In this way, feel in between two worlds.
Everyone is coming from their own place. I guess shrinks only know how to do what they are trained to do.Explore the past. The money thing is problematic. I will give it a bit more time and then evalulate. I hate the dizziness and the hopelessness of it all.I would do anything, follow any lead, to get help. I shouldn't complain because I am better than most but still I am not what I was. But the shrink says that at this point I am (mentally) enlarging the problem. Regarding doctors, one neurologist suggested(when I said I felt better seated) "So sit!" "For the next twenty years?" I asked. She shrugged and back tracked a bit. "Do tai chi," she said. I think neuros are very science oriented. Medications, blood tests, MRI's--- those are the currencies of thir profession. I get the impression that the neuros think I am a bore and they have nothing to tell me. The shrink thinks I am spooked. In this way, feel in between two worlds
Punk said:
It seems to me that shrinks are against this kind of site because you get better advice here and its free. shrinks and some docs carry a certain amount of arrogance. Unless you experience something like ataxia, despair etc you don't really understand it. You can read about it all you like in a book but can never fully understand it, also I think they lack empathy which is important to people on this site. Big hugs Cynthia
Great points Neta, I think they may struggle to come up with answers for things they have little experience of. I think they do care but in their teachings ataxia has no treatment so its difficult to give advice. That's when this forum comes in, and people share their experiences with things that help their ataxia, however subtle. It empowers people and gives hope. To say this is like a porn site is a crazy statement. I can assure everyone that I am fully clothed every time I come on here
I am sure you and everyone on this site, is clad. lol. I told him that I thought he was out of line with the porn thing. To be accurate, he didn't say this was a porn site but like one in the sense that we never see the other party.. You make very valid points. I think he is just trying to protect me from "acquiring" more symptoms. I guess the Internet is both rich and lethal. One has to be careful. Theoretically, even though he does not know much about ataxia, he should know about treating an illness which lacks a cure. He claims that he does.
Punk said:
Great points Neta, I think they may struggle to come up with answers for things they have little experience of. I think they do care but in their teachings ataxia has no treatment so its difficult to give advice. That's when this forum comes in, and people share their experiences with things that help their ataxia, however subtle. It empowers people and gives hope. To say this is like a porn site is a crazy statement. I can assure everyone that I am fully clothed every time I come on here
You are right "Punk" I just went down to a nearby fruit shop to buy my daughter, to whom I am going for the weekend, her favorite dates and fresh cut pineapple. I also bought her 1/2 a log of apple cake and 1/2 a log of chocolate cake.I decided to go gluten so I won't enjoy the cakes. Not fair. There are so many fat, smoking and unappealing people in the street who can eat it all!!!!I I am being picked up at 4 which is less than two hours from now!!! Yikes I better get ready. N