You know Frank........life is strange. Who ever would think about loss of balance. I never did. Puts you into a strange situation for sure. I was diagnosed with Ataxia Oct 2010 and my walking has become very unsteady as if I am totally drunk. My head does this swirling that makes me fall back a lot. If you are experiencing this try to use the wheel walker. Has 4 wheels with breaks. The handles make it nice to walk because you are in control of your motion. I love my walker it gives me that comfortable feeling that I won't fall while walking. It also has a seat to use when on longer walks. Under the seat it has a storage for my purse, ect. Hang in there Frank as you will finally come to realize that it is what it is and life will be a bit of a change. You'll start to accept this and go on enjoying yourself again. Actually I have found that I try to not think about it so much. I feel as if others worry about my condition more than I do. In all Frank life will go on and the Ataxia is what it is and will never go away. Enjoy your life Frank, don't let Ataxia take all control. What you put in your thoughts can be positive if you let them. Use poitive thinking. Good Luck Frank. Take Care.
Peter Franks said:
Its been a rough couple days I admit. But here is the weird thing that I am suspect many of you will understand.
The waxing and waning of life itself
The way things always work themselves out
Ebb Flow
We always felt that a certain balance in our life was more harmonious and conducive to a life of well being... Most people would agree but for us our whole life, we thought we had a certain understanding of the universe. Balance
(I doubt this relates to all of you just a hunch)
As a child I liked to balance stuff, on my nose, toys and such. I liked shapes and the common thread of certain ones. Some sort of connection to what I don't know.
I thought I understood balance until I lost it physically. This word now has an entirely new meaning yet the same. But now I see it an incredibly different light.
Everything about my life from now on is about balance. (it really has been for all of us our whole life but now we don't take it for granted) Balancing my body, my emotions, my energy, my communication and mostly I have to balance my perspective. I take full responsibility for the perspective I choose. Some battles are tougher than others and I won't beat myself up if I lose a few here and there. I am an expression of this universe in the form of a conscious man.
Now, I am learning not to fight what is, not deny what is. I will never win the battle against uncertainty this has quickly become obvious. So what is left?
To just BE with what is.
That is now the challenge at hand. To just be.
I have thought that not knowing was important. Oops silly me, who am I to deserve a better clue on my fate than a physically healthy person? The universe owes me nothing.
Thanks for reading and hearing me unload. I'll be damned if I do not turn this into a gift, If not for me then someone else. I got work to do, get out of my way cause I walk drunk. LOL
I immediately took a love for you and this site. Ataxia was so new to me and weird this place jumped in my life. Still with no diagnosis I want to explain the fear. My symptoms are 3 pronged.
Fatigue
Pain
Ataxia
Those were listed in order of how they diminish my quality of life. Just now I had a feeling of guilt by saying that. Like I just lessened your condition by putting Ataxia 3. But I know or feel that would not bother you. Here comes the customary Catholic guilty joke.
Anyway I am saying this because the love you have sharted here with me is awesome. I am grateful. And the other 2 have me concerned of MSA. I see my Neuro on Friday.
I immediately took a love for you and this site. Ataxia was so new to me and weird this place jumped in my life. Still with no diagnosis I want to explain the fear. My symptoms are 3 pronged.
Fatigue
Pain
Ataxia
Those were listed in order of how they diminish my quality of life. Just now I had a feeling of guilt by saying that. Like I just lessened your condition by putting Ataxia 3. But I know or feel that would not bother you. Here comes the customary Catholic guilty joke.
Anyway I am saying this because the love you have sharted here with me is awesome. I am grateful. And the other 2 have me concerned of MSA. I see my Neuro on Friday.
Frank................Never feel you cannot express what is bothering you. There are many good listeners. Anymore I just sit back and listen to see if I spot something good about this mess we're in. Like maybe a CURE!!! I have been told by many doctors that I have to learn to accept as there is no cure. That is why I just usually just read what people are saying. What seems to work for one may not work for others.
Right now I am waiting for nicer weather. I want to get out to ride my 3 wheeler. I can't drive but I can still ride this bike. I go around town looking for good garage sale items and I enjoy stopping into the cafe for coffee to chat. Busy, Busy is the game now. LOL Do you like to fish Frank? Can you ride a bike? Do you enjoy people? You see Frank we have to change our way of life. I can no longer work as I worked at the school with a special needs teen. She and I became buddies and I was thrilled trying to teach her to use a touch screen computer so she could communicate with others. My balance became to noticable and my doctor said it was time to resign. Darn I hate that word..........I wanted to stay and be sure she knew all she needed before I resigned. Plans were shot down and here I sit twiddling my fingers. That's not all bad though because guess what??? I can still twiddle fingers with no problem. LOL LOL
How much restriction are you feeling so far? I can still laugh, talk, smell, cook (Have you ever seen a cook who sways like they are drunk)? Very interesting. I still go walking with four wheel walker. Of course someone has to be with me. My chaperone. I clean very careful. Having problems with vaccum and mopping as it does get me dizzy. So guess what?? I go slower. LOL See, it just means we need to make adjustments in our lives. And one big thing about having to have help with doors or steps. I have decided it would be nice to be able to hand them A piece of candy in thanking them for their kindness. I think that would make my day just making them smile.
Well Frank I am sending you well wishes on your Neuro appointment. Maybe they have an answer for you. Hoping so! I have made the choice to go see mne once a year and talk to let them know what has changed. My thoughts to this mess is why go to a doctor if it can't get fixed. I already know for sure what's wrong so why be reminded by doctors anymore. I can still get into the car as long as someone else is behind the wheel to get me there. I am living and breathing for the time being by God and I will face what ever happens when it happens.....
Hey Frank ...have a great week and enjoy today and take time to think about what you will accomplish tomorrow.
Thanks for letting me ramble on. I realize some may not like how I look at this but it's my thoughts to feel how I want.
One thing I can still do is to speak what is on my mind and I hope everyone else can do the same. For those who cannot express their thoughts or use their words look into a computer called the Dyna Vox. They have a touch screen and it also has a voice to it if someone can program this computer for you. My student could not talk so I programed hers so that she had a voice and could say what she wanted to someone. They are awsome machines
Have to go for not. Hang in there!!! Vickie Welsh said:
Peter Franks said:
If this isn't the place to vent well too bad.
I immediately took a love for you and this site. Ataxia was so new to me and weird this place jumped in my life. Still with no diagnosis I want to explain the fear. My symptoms are 3 pronged.
Fatigue
Pain
Ataxia
Those were listed in order of how they diminish my quality of life. Just now I had a feeling of guilt by saying that. Like I just lessened your condition by putting Ataxia 3. But I know or feel that would not bother you. Here comes the customary Catholic guilty joke.
Anyway I am saying this because the love you have sharted here with me is awesome. I am grateful. And the other 2 have me concerned of MSA. I see my Neuro on Friday.
Well said Vickie.Talk about determination.You have made such an attempt at overcoming the obstacles.I do the same now but I didn't always.
I had to go to the doctor years before with General Anxiety .I was treated and that was before I had Ataxia.
Noow I get frustrated with my Ataxia but have developed strategies to stop being scared.I shake now ffor a different reason..
Have you been following the cooking theme Vickie.I do the same as you in the kitchen but what a mess after.I try to pick things up with the rollator everywhere I go but I keep dropping things.i feel much better that I have tried but don't like surveying the scene.I have to start earlier and earlier but I think it is our personality that comes through though.
Maria.......... You sound like a strong willed person yourself. Good for you. I do myself make mess after mess. I like to put things away as soon as I am no longer needing it. Then I don't have to explain my other messes to someone else. And yes I have noticed I have the droppsies more so now. I know I had to get more glasses as I have broken many already. I have to hang onto the counter a lot as there are times my head takes a dive making me feel as if I may fall. I call it my dangerous cooking times. I kid with people that I live in danger all the time now. LOL You use a rollator to pick things up? What exactly is that? Hey Maria I have a question if you don't mind me asking. Are you in a wheelchair? Or is that not something you are ready for? Myself I am not in that need of one just yet. Thankful for that.
Another question Maria........are you still able to ride a bike? I have a 3 wheeler that I absolutely love. Big basket between back two wheels. Keeps me so busy in spring, summer and fall. I try to get my house done then I take off to have coffee, visit and check out garage sales. Mostly on Fridays. If your in a small town this works well for getting out side and get excercise. Now if only we lived in the same town. We could enjoy a visit or bike ride.
Well Marie I thank you for replying back to me. That was so nice of you. Any time you need to vent I will be more than happy to listen and talk with you. Spring is on it's way. Looking forward to getting out and enjoy that sun.
check back again with me, lets visit. Take Care Now.
Marie Turner said:
Well said Vickie.Talk about determination.You have made such an attempt at overcoming the obstacles.I do the same now but I didn't always.
I had to go to the doctor years before with General Anxiety .I was treated and that was before I had Ataxia.
Noow I get frustrated with my Ataxia but have developed strategies to stop being scared.I shake now ffor a different reason..
Have you been following the cooking theme Vickie.I do the same as you in the kitchen but what a mess after.I try to pick things up with the rollator everywhere I go but I keep dropping things.i feel much better that I have tried but don't like surveying the scene.I have to start earlier and earlier but I think it is our personality that comes through though.
Not in a wheelchair yet but have gone to an indoorwalker now as the Neurophysiottherapist saw I was lurching around the furniture,launching myself and guessing.
I am now considering my safety more than my strength.I ride an outdoor mobity scooter now for the same reason you like your bike.I tried to ride an ordinary bike a few years ago.It was a disaster.We have got several hills near us and although the dog gets plenty of exercise I have been spoilt.I would love to use an adapted bike but I am worried I might get squashed by a fast motorist.I used to do a lot of walking until about a year ago.I was also a teacher in a classroom and never sat down then.
I was skinny with nerves and stress then.
Now I have developed new routines.I feel guilty sitting down.I will have to change and adapt.I also was very sociable but now I have to listen more.
I am a strong willed person but I have become calmer as I have got older.Keep in touch Vickie;it looks as if we have quite a bit in common.
Thank you Rose very much, I have a sense of humor about it and that helps for me. Many comedians are so funy because of their pain. Anyway thank you again, I've always been good at perspective, this one is new...not knowing why or when it is going to slow down. My rate of progression is kind of fast.
rose said:
Hi Peter, I was diagnosed with ataxia 10 years ago and have gone through all the stages of grief, from denial to finally, acceptance. Acceptance has been rather refreshing! I'll never give up or give in though. Ataxia is frustrating and challenging! I will keep exercising for strength and balance and try to eat as healthy as possible, as that helps my ataxia more than anything. I spent too much time lamenting about what I could no longer do. Now I embrace what I can still do! I'm a positive person also, and realize although I can't control having ataxia, I can control my attitude. Remember, you are not alone in your journey! I hope you find comfort in that..., ;o)