Encourage and support!

[Veteran250]

My friends, if I may address you as such...... we are not in this community to argue or insult each other, we are here to encourage and support each other on our respective journeys to live with Ataxia.

Some members are still able to walk and I envy them, for me, I need an electric wheelchair to get out and about to go shopping or just get out of my house which sometimes feels like a prison.

I am 75, and still as active as I can be, I have numerous medical problems besides Ataxia but I put them all to the back of my mind and get on with life....... theres no telling how long I have left, so for whatever and however members handle they’re Ataxia, please respect they’re wishes!!

Don. 😀🌞👍

[Staggy1]

Sending you a virtual hug x

[Veteran250 in reply to Staggy1]

Thank you Carole, greatfully received my lovely, why cant everyone be as friendly to a complete stranger?? 😀😘🌹 Xx

[Staggy1 in reply to Veteran250]

They must only have a little heart! You know you have good and bad days, your emails helped me when I was on a downer. I’ve been loosing strength particularly on my left arm, i was told this morning that it is unfortunately related to the Ataxia....☹️ oh well... 😃🖐🏼😘

[Veteran250 in reply to Staggy1]

Carole, with respect to your motability car, if you havent already done so, get a knob put on your steering wheel, so you can steer it one handed, and believe me, its easier! 😀👍🌞😘🌹

[Staggy1 in reply to Veteran250]

I should get the Mini week 23 (first week of June) I’ll send you some pics xx

[Veteran250 in reply to Staggy1]

So much freedom is coming your way, so enjoy it, I did....... but sadly, to soon, I am unable to drive anymore. 😕Xx

[MusicalGardener]

Thanks Don. I use a stick and a rollator/walker now, and may one day need a chair. I think mobility aids need to be seen as devices to liberate the user and offer safety in a wider range of activities, not something shameful. I appreciated your “like” in support earlier too. Xx

[Veteran250 in reply to MusicalGardener]

I went from unsteady walking to walking with stick, manual wheelchair, electric scooter and now powerchair....... powerchair is better for me than an electric scooter, when going on parade with other Military Veterans!

[ConfusedAtaxian in reply to MusicalGardener]

Love the name 🤗

[MusicalGardener in reply to ConfusedAtaxian]

Thanks! 😊 xx

[Litty]

Well said - love you loads x

[Veteran250 in reply to Litty]

I feel privaliged Litty, to get such a message from a beautiful young lady such as yourself 😀

[Litty]

You are so sweet - love you even more now xx

[Grapes12]

Such wise words, thank you.

[ddmagee1]

You are such an inspiration to me! Thanks for your post! The power of positive thinking, can be unleashed, and is a valuable tool, when one is stricken with a devastating, debilitating ailment, such as Ataxia! I concentrate on what I am able to do, not on what I've lost, due to disease progression. Many times, I turn negatives into positives, and, rather than bemoan my difficulties, I reach out to others, learn something new every day, and try to do a good deed for someone, as often as I can! Sometimes, just a little bit of understanding, support, and encouragement, can make all the difference, to someone who is suffering from an ailment, that they never wanted to have. Best wishes to you, and enjoy your power chair, when you can get out and about. Thanks for your service to your country, sir!

[Veteran250 in reply to ddmagee1]

DD.

I have always tried to uplift people in my posts from this morbid condition called Ataxia!

We all know there is no known cure at the moment and will ultimately end up in a wheelchair and then eventually death, but why should we dwell on the subject, I for one will not.

I am an admin member on another HealthUnlocked forum called Quit Support, for members who are trying to quit smoking...... as well as the serious side of giving encouragement, support and information, we also like to chat, joke, have a laugh, upload videos(I dont know how to do that) lol...... but I dont see that on the Ataxia forum.... it is morbid enough knowing we have Ataxia and the consiquensies, surely we could interact more with each other..... in the meantime DD, Have a nice day!

Don 😀👍🌞

[ddmagee1 in reply to Veteran250]

Thanks Don! You have the best attitude, and I appreciate your posts! Take care! Doug

[simon111]

Well said Don...I love your bright cheerful posts

I haven't ataxia,my 15 year old son has,friedrichs ataxia,...he has cardiomyopathy and scoliosis as a result of friedrichs...his life expectancy is shortened considerably

My advice to those that have ataxia and struggling...if you have children?,be thankful it's you and not them.I would swap places with my son in a heartbeat..it's unbearable watching him struggle

Mary

[Veteran250 in reply to simon111]

Thank you for your reply Mary, you are a loving mum indeed and your son I’m sure loves his mum no matter what and he would be proud of you for that comment...... my regards to you and your son, I’m 75 now but will fight this till my dying day. 😀🌞😘

[simon111 in reply to Veteran250]

Thank you Don....keep fighting you are indeed..a hero

[ConfusedAtaxian]

Don, I don’t think I have seen any unfriendly comments on here so not sure to what you refer but good for you, we are all ‘friends’. Best wishes, Linda.

[Veteran250 in reply to ConfusedAtaxian]

Sorry Linda, but the post and its responses were deleted by admin as an unhelpful posting 😀

[coat2003]

Good on you, Don. That's the spirit! I understand what you mean a 'prison".

[joboe]

Good morning Don

I got such a good vibe from reading your post

I was diagnosed with Ataxia June 2015

I was totally gobsmacked as you can imagine when I was told not having a clue what Ataxia was.

But in the last 4 years I've learned to live with it re adjust and make adaptations.

I have good days and bad days and I take each day as it comes.

I don't feel sorry for myself when I look around me I see people who are a lot worse of than me🤟🤟🤟

Patrick

[isabelalfaiate]

Dear Veteran250, I also enjoy reading your posts and find them so upliting. Keep up the good work of cheering us up. I am still trying to work at not being embarrassed to use a walking stick. I am still walking around unaided but hanging on to someone when I am outside the house. At home I can move and do everything, but I do feel the lack of freedom, not being able to just go out on my own. But I believe in counting my blessings. I am so lucky, I have friends and family who are constantly inviting me to go out, I am always ready to go.

best wishes to all the members of this group, which is so important to me

Isabel

[Veteran250 in reply to isabelalfaiate]

Isabel my lovely, dont be embarrassed about using a walking stick while out and about..... it will warn people that you have a disability and give you more time and space. 😀😘🌹 Xx

[Veteran250 in reply to Veteran250]

When I used a walking stick, I felt off balance when using it, so opted for two..... it was so much easier 👍😀

[Pigeon]

What a lovely post

No truer words spoken

[Veteran250 in reply to Pigeon]

What a lovely profile photo for a Pigeon 😀😘

[pollybanana]

Very well said , we should never be embarrassed by our disability and whatever works to give us freedom and safety should be encouraged.