That was a 'fair whack' to read! I'm not complaining though - I'm sure if you look at my posts you will see how much I tend to drone on. :)
Most of your 'Fact's are very well put and, indeed, common sense. Though I do not particularly disagree with anything you wrote, I feel I must respond to each fact;
COMMON SENSE FACT #1....Many need to stop blaming ataxia for all of their woes, and take some responsibility. Lack of any kind of movement or even moderate exercise is hurting you tremendously. Just like the person who sits on the couch eating ice cream and Twinkies will never lose an ounce, an ataxian who doesn't move will never make anything happen.
I could not agree more. However we must also recognize that there is a variance in the degrees by which each of us is affected. We must exercise, it is true, but we must not over do it.
COMMON SENSE FACT # 2...Every little ailment or ideosyncrasy you experience is not a common symptom of ataxia. Don't look for trouble where there isn't any.
This is very true. We must be careful here though and remember that what may seem insignificant to us may give a medical professional (when we report it) a better idea of what our ataxia is and how it affects us.
COMMON SENSE FACT #3...It's not always a balance issue. Many times an ataxian trips because they don't lift their feet off the ground high enough. The body moves, but the foot has it's own agenda.
If I had a penny for every time I tried to explain this to ANYONE, I'd have £3.62 (a silly amount made up to make a point)! But then what you write at the end is the crux of the matter for some! My balance is affected all day every day but it kind of has it's ups and downs (groan). The main issue is when I go to walk in a straight line and my head sends the messages to my legs / feet but they respond with 'Ya what? Go bother someone else.' Many of us have to adjust the way we walk or do other things because of our ataxia(s). Anyone not prepared to make adjustment will likely have a much harder time of it unnecessarily.
COMMON SENSE FACT # 4...Weather has absolutely NOTHING to do with you catching a cold or getting the flu. They are viruses transmittted from person to person. You can stand outside naked in freezing temp with wet hair, and all you will get is laughed at.
I had to 'LOL' at this! (In a good way).
One of my favorite stories relates to me (some years ago) standing in below zero temperature in the patio area of my sisters house one fine but chilly boxing day afternoon. The house was in Germany and next to my weedy frame stood two rather large German guys that I was talking with. The two guys had winter clothing on and I was in shorts and t-shirt. They went in the house complaining of the cold - I followed ten minutes later to gasps of surprise when I said it was nice out! I guess living in the North of England has helped me cope with the cold.
Any way you are right about the spread of colds and sniffles.
But (and there it is)! It seems that many ataxians do feel a lot worse in bad weather and we must all be aware that bad weather can make us feel worse and act accordingly. Sadly I have Fibromyalgia as well as my ataxia problems - nuff said!
COMMON SENSE FACT # 5 -There are THOUSANDS of conditions/diseases that have no cure, and that you never heard of. YOU never heard of ATAXIA before it hit you between the eyes. YES, most drs. know nothing about it. There is no benefit in complaining. DO SOMETHING ABOUT IT!!!!
Mostly true! I had read of cases of ataxia in a magazine some time before I was told that I am most definately affected by the same (it is to my great shame that I dismissed the condition back then as just another little known of illness). Sometimes complaining is a way to do something about it. We must learn how to make a complaint into more of an information exercise and give that information to the correct people though. People who may well be able to help us. I agree though that blaming or complaining about a medical professional is likely to be of no help - we should work with said professionals to help ourselves.
COMMON SENSE FACT #6 - Exercise is ANY type of movement...You don't need equipment, or a gym membership. Walk, swim, bike, stretch, yoga, play with dog, mow the lawn, shovel snow, sit and just flex muscles, wiggle toes, laugh out loud...ANYTHING you can do beats doing nothing. Hold on to furniture, lean on a wall, crawl around on the floor...Use your noggin.
Agreed. Though I must say that going to the local (financially subsidized) gym was a great help for me and I am sad that it is not now open at a convenient time for me. Sadly, I cannot keep my balance on a bike and I miss my long bike rides too. I currently have an exercise bike, exercise step and a couple of things to help exercise my arms. I also do neck, back and leg exercises that were suggested by my physio some time ago and they help.
Another great help for some is using a games console! I'm sure our friendly resident (so to say) expert on this Kati will back me up on this. ;)
COMMON SENSE FACT #7....Ataxia has caused your body/muscles to not work like they used to or nearly as much. Your feet,, legs, back, shoulders, etc. all hurt because of this. USE THEM, MOVE THEM, EXERCISE and STRETCH!!!
Pretty much what my doc said with an added twist in a jovial manner of 'Use 'em or lose 'em'! Though, as I said earlier my problems are complicated by Fibromyalgia. :(
COMMON SENSE FACT # 8...Medical school does NOT have ataxia in their cirriculum ...it is HIGHLY specialized. Dissing on a nurse or primary care Dr. or ANY medical person for not knowing is like taking a high end Bugatti with an intermittent problem in the computer that controls braking and acceleration to your local Midas or Pep Boys, and being mad they know nothing about it.
True ... but! The human body can be fairly, in a way, analogized to a high end car. That is why we try to get help from high end medical professionals. A low end garage may not be prepared to make inquiries into how to fix a high end car - it's just not good business to take on a job that may cost a lot more to do (especially if the job goes wrong) than any return given. A 'low end' medical professional may not have the skills or expertise to help an ataxian but should surely be able to refer that person on to some other that can help.
It is, of course, wrong to 'diss' a doctor or such though for not knowing what ataxia is. We can always teach them though!!
COMMON SENSE FACT #9....Supplements and vitamins can make your body FUNCTION better. They are not a medication that can make you FEEL better. Exercise, with some supplements and a healthy diet however WILL make you feel better!
Again true. We should all be aware of this and remember that although some supplements or vitamins may be safe to use, it is usually best to consult our Dr before setting out on a course of 'treatment' (I use that word lightly).
COMMON SENSE FACT #10....Results require action. Do what you will with information given...put it into practice, or be like the smoker that says they need to quit while firing up another coffin nail and hacking up a lung. Doing nothing gets you nothing.
Generally absolutely correct (if that makes sense). Just that we have to remember not to over react on results given. Just because it is raining, it does not mean that the sky is falling!
I have to write here now that Your OP Jonas is brilliant. We all need to get different opinions on these matters and we all, from time to time, need a bit of a 'shake up'. Thanks!