Few good days

Hey all,

I wanted to share I have had a few good days recently lots of strength and less wobble. I wonder if it's because I have been busy caring for my cousin who has unfortunately been diagnosed with advanced prostrate cancer. I look at it spiritually and think maybe God has given me strength to be able to help another in greater need than myself, being off work has allowed me to take him to hospital for tests but at the same time spend a little quality time chatting not just cleaning and paperwork. I feel good anyway even if it only lasts a few days. πŸ’ƒπŸ’ͺπŸΎπŸ™πŸ½

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  • Hi Vion!

    I don't know if their is any medical evidence to back this up, but I feel the same.

    I have come to the same conclusion, but in reverse.

    On periods when I'm not very active (say for 2-3 days), I have the impression that my ataxia progresses faster.

    So I keep active when possible.

    It doesn't reverse any affects, but slows down any worsening.

    Keep active, and keep smiling.

    Iain :)

  • *there

  • Yes I also cancelled my Acupuncture this week as I felt very lethargic after each session and wanted to test a theory as maybe it was that making me worse, resting certainly makes me more sluggish. Anyway I have a spring in my step for now and hope it continues at least until Saturday as my son turns 21 and would love to be able to have a bit of a boogie with him and the friends I have invited to his party. Tad ambitious I guess but I aim to try.πŸ’ƒπŸ’ƒπŸŽ‰πŸ™πŸ½πŸ˜„

  • Let me know how your acupuncture goes Vion. Acupuncture is something I have been considering - if it can slow down the symptoms. But if it seems to make things worse, or has no overall benefit, then I'll probably give it a miss.

    Enjoy the party!

    Iain :)

  • Will do 😊

  • Hi Vion,

    I am really glad that you are having a good patch. I, too, find that my symptoms are better when I have other things to focus on or, like you, when I have somebody else to think about. I think it important to remember that we are not just people with ataxia but also individuals who have family, friends, commitments and interests. My mantra comes from Shakespeare's King Lear: 'Expose thyself to feel what wretches feel.' You have done this with your cousin, who will have really appreciated your support.

    Next time you feel down, you will be able to look back on this good time, knowing that there will be more positives to come.

  • Hi Vion

    Thanks for sharing your good news.

    The only way to counteract the symptoms we have is by being positive and looking outside ourselves for things to do and people to help.

    The elephant in the room with ataxia is the emotional & psychological effect it has. This is the same for anyone who faces loss. From loss of a loved one to loss of a dream, or loss of easy and graceful movement.

    I have an in-law who is suffering from loss syndrome after having breast cancer. She is not coping with life and is so unhappy she finds it hard to be nice to anyone. Everywhere she looks other people are so much better off than she is, and she can't stand their luck or good fortune.

    I went through a pity poor me phase and it's perfectly normal. The important thing is to notice when this is passing and grab hold of life and be thankful for what we have rather than grieving for what we've lost or may never have.

    All sorts of therapies can help, none of them replaces our own determination to make the best of life. As Iain says being active is the best medicine. Resting is tempting but only leads to inactivity and the cycle of getting worse.

    Keep going and enjoy what dancing you can manage. Practice first and see if side to side movements are easier or harder than front to back. Dancing of any sort and the laughter and sharing that goes with it are great boosts to our system and wonderful exercise. If the music is loud sing along as well.

    Have fun

    Nigel

  • Thanks, I did for a small moment think I was getting better and Ataxia was as the Dr said just stress, but yesterday I was worse again and realised I could not do much before I was physically shattered, so yes tomorrow I will dance a little and sing too and when I am sad I simply do what I do best help another through troubled times and mine don't seem so bad. πŸ’ͺ🏾πŸ’ͺπŸΎπŸ˜€

  • Hi Vion

    When recovering from surgery or illness the patient will find it hard to go straight back to their usual pattern of life and activity. Some days will be good, others will feel like a backward move. Older people find a day out usually needs to be followed by a quiet day at home.

    So too with ataxia. Particularly after diagnosis, when it seems we have all experienced a sudden worsening of symptoms.

    In recovery we need to do as much as we can, and then if we are tired the next day do less, but still do something.

    A common thread on here is about feeling embarrassed in public, and this is a real concern. The way round this is to do as much as possible at home and get stronger before venturing out. Then find the right aid to help you.

    Nigel

  • Very wise words Nigel (as always!)

    Iain :)

  • Very nicely put Nigel, a hobby is a great distraction.

    I love gardening but I do have to take more care now , a few weeks ago I wobbled and sat on my rake handle, snapping it completely.

    My coccyx has just recovered but the rake won't.

    Andy

  • Hi Andy

    Not just a hobby but a good sense of humour too. If we can laugh in the face of diversity it takes away its power to upset us. RIP rake!

    Nigel

  • I think you are all great for this. I sound like Nigel's aunt--full of self pity. I have to say there are no "good" days for me. If anything I feel wobblier and mouth-stuffed as ever. Of course. I avoid canes and anything that might make me seem disabled, telling myself its some small defect that I have. Strangely. when I sit (in silence), I feel normal like in old times . But when I move, it's another story. I guess you can say I feel better when I exercise alot!!!

  • Hi Neta

    Now you have admitted to yourself that you are 'wallowing' a bit, there are lots of things you can do, even while sitting quietly. I have put a link on my website to armchair exercises, as used by the nhs. You can do eye exercises, hand exercises, tongue twisters, facial gurning, us a mirror and have a good laugh!

    With the right action I think we could relegate late onset ataxia to a minor annoyance.

    Whatever little thing you can do, do it more often and more times.

    Nigel

  • Thanks for your response. this is my second attempt at writing to you so if you got the first response.... The problem is with my computer not this site. As I said in my previous email-- neither my husband nor his healthful aging mother (my mother in law) are at all sympathetic to my plight and think ataxia is just an insignificant nothing.

    For example, this weekend, my mother-in-law treated us ( PLUS MY HUSBAND'S MARRIED SON W WIFE AND TWO SMALL KIDS.)

    to a lovely weekend in a hotel. Food was served buffet style-- meaning negotiating through crowds frequently whilst holding one's plate and visiting at various food bars. Initially, my husband got me several helpings-- a fact which drove his mom nuts-- not sure why. At one point, my mother-in-law screamed "get up! Just get up." As though, raising her voice and willing it to happen, could help.

    Another time she said, "You know if you don't move, you will get a fat bottom." Well, wasnt I there? It meant leaving my room, taking the elevator down and walking across the dining room. Obviously I did move but this was hardly noticed. {My own parents are alive but too old (in their 90's)and frail to do anything.} At later meals, I made a point of getting my own food but I concentrated mightily not to fall. I was happy that I did not choke at all during mealtime...something which happen sometimes.

    However, I repeatedly "fell out" of the elevator, grabbing onto startled fellow passengers, and at the pool, (which I managed to reach twice or thrice with no assistance), my husband, worryingly, took my cane in the water, goofing around with it until I pointed out that it was/is not water-proof. He also called me "nutty" as a way to explain the presence of the cane to his curious granddaughter, age 5, also in the pool. At the pool, two older women one British-- very polite and discreet---, the other Russian, assisted me or asked if I wanted assistance. I said, no thanks. I am super-conscious of seeming "normal".

    Do others have such problems? Three months as Iain says?! This i going on for ages!!

  • It's entirely natural neta. It lasted about 3 months for me. My life was terrible, it held no prospects, and all my future plans for all the great things I would do and see, lay in tatters.

    But it does pass. And suddenly you become aware of just exactly what you will still be able to do in the future. The good times that you will have. And the positive impact that you will have on other people's lives.

    For me it all rested on one thing. Acceptance.

    Once I had accepted that my future would be different to how I had planned it, then I could start enjoying life again.

    A different future. Not a negative future.

    Iain :)

  • Thanks for your response. Acceptance is very hard for me. Please see my reply to Nigel. It is also meant for you. N

  • Dear Vion, Kudos to you for this! In helping your cousin you helped yourself...,definitely a win-win situation! Yes, I find the more I move, the better off I am, seems to be a common theme with ataxia! And helping others takes your mind off yourself, always a good thing! My best to you...,;o)

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