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Ataxia Support Network

Good day, bad day


#1

Normally, I have good days. A good day for me is that my constant Ataxia is what it is and has not exacerbated. Yesterday [Monday], I experienced a bad day where my balance was more terrible than normal. It really scared me! Today [Tuesday] is a good day but I would like to experience a GREAT day. Sound familiar to any of you?


Standing up after bending down and legs getting weaker
#2

Of course. Would you believe, that most of the nights I fall asleep going to my “happy place”. I close my eyes and think that I am receiving a drug that is gradually changing my ataxia and getting back to “normal”. Do you think, I should tell everyone that I am on a new drug or keep it a secret?


#3

Only if it works would be my reply!


#4

I’d love to experience a great day :slightly_smiling_face: But, I’ll settle for an ok day :wink: My balance is becoming increasingly worse, in fact I’m not very steady on my feet and find myself doing the ‘two step move’ more often now.
However, this morning I went out to feed the birds and ended up spending an hour snipping in the garden :slightly_smiling_face: I’m safe as long as I stand still. If I bend, tip my head back, stand on a twig or fir cone, anything could happen :joy:
Despite the drawbacks, I managed to semi decimate an area of shrubbery ( it was very satisfying, more so than housework :wink:), fill a wheelbarrow twice and stagger to the compost area :+1: :blush: xB


#5

Good for you. I like working in the yard when the weather is good. Johns Hopkins gave me daily exercises to do,Daily Exercise.pdf (1.5 MB)
helps a lot.


#6

:slightly_smiling_face: Thankyou for posting. I can see where appropriate exercises are ticked, but I don’t think I would ever progress to standing on a foam pillow :wink: xB


#7

I wake every morning thinking “I was just having a bad dream” were I couldn’t walk right or make conversation properly etc. Then I stumble to the kitchen for my morning cup of joe, disappointed, realizing I wasn’t dreaming. I sit sipping my coffee looking all around at the tasks I’m going to accomplish for the day. (I hope it’s going to be good day). By the days end I sit broken hearted thinking of all the things I wanted to do but couldn’t. I lost steam! I often feel guilty for not doing more, but I know deep down I just can’t. And I shouldn’t feel guilt, but it’s not my nature to just sit around and do nothing. It’s really difficult going from 100 miles per hour to 2 miles per hour, if you know what I mean? In fact as I sit here typing, I would prefer to be doing house work, or working period. If only I could muster the energy! If only I wake tomorrow and I’m all better.
I always say to others who wine about having to work or do something they don’t like doing, “just imagine you can’t”. Some folks seem to take for granted being “able”. I remember when I was working thinking “I can’t wait until I retire, when I don’t have to go to work anymore” I had plans for my retirement. Now I would give anything to be working again. Carry-out my plans.
I hate to be a downer, and I’m normally not, but today is one of those “bad days”
Maybe tomorrow will be a good day?


#8

I do have bad days too. At those times I use a walking stick (not a cane). A walking stick just steadies you when I need it. A cane you lean on.


#9

:hushed: Interesting to have that difference pointed out. My bad days involve my rollator, and sometimes that doesn’t quite cut the mustard :smirk: xB


#10

Absolutely, I too have good days and bad days.

If the ground is slippery it’s usually worse. I suspect it is partly, but not wholly, a matter of confidence. If I get off to a good start I usually have a good day, if not, I usually don’t. I just slow down on bad days, although I find it difficult to do so, and move within my perceived limits of ability.

In my case swings from good to bad are moderate and not extreme but still annoying.


#11

I think everybody has good and bad days. Hopefully more good than bad. For myself, it is walking around the house. On a bad day, my legs can shake so bad that the kitchen is as far as I get, and even with my walker, this can be a challenge. At least I can get my morning coffee! :grinning:


#12

I know when it is a bad or good day simply by the looking at the weather. If it’s cloudy or worse raining, it will be a very bad day. I can tell what the weather will be before I get up in the morning!


#13

Yes, good days and bad days! What I like to know is what determines a good or bad day! That would mean we could influence maybe what our day will be like. For me it’s not any bad weather. I had bad days in extreme heat in California, but was OK in the Texas heat. I seem to get worse after lifting things and trying to carry things around, but not always. My balance and ability of standing on one leg are usually equal each morning (=moderate, like 6 seconds). What happens then??? Some days it’s impossible to keep a straight up posture and I can only lean against things…


#14

Low pressure definitely worsens my day, and like you Henry, I seem to be able to detect ‘one of those days’ before I even get up in the morning :smirk: xB


#15

Having bad days can be determined many ways. Is it a bad day like everyone else has? or a bad day brought on by a neurological condition? I don’t know. But to me, any event, occurrence, activity, or incident, that causes the balance of my daily functions to upset or deviate, may be considered a contribution to a bad day.
If we place the symptoms of our conditions beside what is considered to be normal, and compare them, then I would say every day must be a bad day. But I know this is not the outlook to have regardless of how bad it must be. We must count our blessings, and realize there are those less fortunate.
One can usually say today is worse than yesterday because: walking is more difficult, I can’t seem to find my balance, my coordination seems to be off, my speech is poor today, I find I’m repeating myself a lot, I don’t have any energy, etc. We tend to compare everything to " the way it used to be ".
I seem to be more in tune with having trouble annunciating or being off balance, I notice it takes more effort and folks around me may not see.
Either way, I think that good days or bad days are measured by how much effort is required to achieve the appearance of normality.


#16

I catch extended family (from the non-ataxic side) making comments like they don’t think there’s anything wrong with me, because they only see me on good days.

But things have been so bad this past month that I’m going to ask my dr tomorrow about getting a rollator. It’s been too much laying on the couch while the house goes to h*ll around me.


#17

Hutchy PLEASE realize you are a good soul and deserve to be your own best friend more.
Make sure you are listening deep down. You don’t deserve to go through this, deal with it all AND be hard on yourself ever. Period.
I have read your words probably for years which sounds creepy and think of how if I saw you in a crowded place afraid or worried you would certainly be there to lean on.
Please make sure you do this for yourself, you are more than worth it xo


#18

Hutchy
As you sit and type you’d rather do housework.

Me Me Me!

I love to tidy. I love be up with the birds. I love to think of what they are all doing with their day fluttering around. I love a to do list, I can’t write them anymore. Well I could but it would look like a baby wrote it.

Long story short, I feel the same and it doesn’t stop.

I am currently on NO medication. I suffer. I’d love to relax. It’s just complicated and side affects or weaning off is just TOO much stress on my body and mind so I’ve decided until I get a better diagnosis I’m going to try to remain “how I am”.

BUT the one thingi have considered bc of this feeling you mention HUTCHY is an ADHD medication such as adderal low dose of course.
It could aid with our motivation and in turn for me getting things done really mentally makes me feel better and a lot less of thatg you mention.

It’s not for everyone but HUTCHY why not ask the dr to try a low dose. It’s not like jittery caffeine. I wouldn’t let my body go through that. Low dose low amount as an aid.

Just my thoughts xo


#19

If this was you being “down” then you win an award.
Just sounds honest, and I needed it.

It’s such a poignant LIMBO that we live in.

Somewhere between our old selves and “not stage 4 cancer or terminal tumor, etc”

Not dead but living in such a shakey state of unwell.

I find for me young children give me the most healing thoughts but many adults are without knowing it aiding me in losing faith and hope in others. But then the guilt of sharing my inner turmoil - not fair on them.

So that’s why I am here with all of you xo


#20

Beryl

I’m 40 in a few months, I want a rollator!

Too embarrassed to say I need/want it. My poor husband. My kids, do I want my young one seeing mom roll.
When I left hospital with my walker we called it a shopping cart. He was 2, he’s 6 now.

I use a WALKING STICK.

But I’m having a hard time with larger parking lots. I try to park by the shopping cart stalls so I can just grab one so my young one doesn’t have this image of me with a “cane”

I hate it. I hate hiding it but I don’t want to accept the change for them. I want to run with my son :disappointed_relieved: