i went to see my general practitioner yesterday and she described me as being chronically sick
I'm sorry that she was so callused! My vote is to find another one that gets it! :0)
I understand 'chronic' to mean long term, so yes, until a cure is found, we have a chronic condition. Perhaps 'sick' is a poor choice of words?
Hey guess what? Newsflash: You may well be. I'm not sure she was being callous, just truthful. Bottom line: there is no cure for this "marvelous" illness. Just keep yourself limber and in shape. Not sure any foods or vitamins work for real. Ditto acupuncture which I do because Ilike the person who administers it.
I do take this thing called IVIg because in my case, they think the CA was/is autoimmune induced and the literature points to some peoplewith autoimmune issues responding to this drug. Not so sure I am one of those people....Ithink the relevant scientists-doctors-neurologists etc all over the world are "into" "Brain" research, because it sounds sexy, half of us will get Alzheimer's some day, (all we need!) and there's money in it but, in the end, little is known, sadly.
I have no idea what they are doing all day in those labs besides earning alot of $$$. I think a professional should look into it because money is being wasted.
Hello Jason,
I am not sure whether you posted because you were offended by the terms used by your doctor or if you wanted to know the meaning of “chronically sick”.
We need to learn to call a cat a cat and a dog a dog as my mother would say.
Chronic means long term, as Joan mentioned, so, we do have a chronic condition, disorder, disease, illness, sickness…whatever you want to call it.
We need to accept whatever is thrown at us and face it with courage. This means among other things, accepting reality and let go of fear of words. Knowing exactly what the problem is will give us more power to fight that problem.
Of course, it is difficult to hear the truth, but hiding our head in the sand does not help us at all, but gives us a false sense of security.
I would rather hear the truth with all its implications, this way, I can be prepared. It does not mean giving up, because knowledge is power and makes us stronger.
Of course, this is me and not everyone reacts the same way.
Keep your head up and best wishes.
Here is a prime example of the proverbial can of worms. Have you been diagnosed with ataxia? If so, this is an issue far beyond any GPs comprehension. Were you seeing your doc about something other then ataxia? No matter what relationship you have with a GP, or other doc, neurologist, etc., when it comes to ataxia - game over. Other than an ataxia research neurologist, or a movement disorder specialist, you are wasting time, money, and effort. The vast majority has no clue, or are just guessing...SERIOUSLY!
Ataxia is NOT a sickness, it is a condition. Many refer to it as a disease...I DON'T. It may be a matter of terminology to many, but it is a glass half empty-half full kind of thing, and it may be the difference between living semi-normally or doomed, depressed, and defeated. Also many people need to take ataxia out of the equation, as life isn't all about ataxia. An ataxian can be healthy or chronically ill dependent on many factors.
I agree with you entirely Jonas, and my shrink said similar things today. Look at it this way (he said to me): It's not like we made a bargain with the universe-- all or nothing. Perfect health or death. It doesn't work that way (itseems). I often wonder, who is walking aroundlike me? Answer: No one I can tell. But the fact is, people are walking around with appointments for radiation therapy, heart meds, high blood pressure pills... the list goes on and on. Just recently, a good friend told me she was afflicted with incurable very distressing diseases, two of them..
Jonas Cepkauskas said:
Here is a prime example of the proverbial can of worms. Have you been diagnosed with ataxia? If so, this is an issue far beyond any GPs comprehension. Were you seeing your doc about something other then ataxia? No matter what relationship you have with a GP, or other doc, neurologist, etc., when it comes to ataxia - game over. Other than an ataxia research neurologist, or a movement disorder specialist, you are wasting time, money, and effort. The vast majority has no clue, or are just guessing...SERIOUSLY!
Ataxia is NOT a sickness, it is a condition. Many refer to it as a disease...I DON'T. It may be a matter of terminology to many, but it is a glass half empty-half full kind of thing, and it may be the difference between living semi-normally or doomed, depressed, and defeated. Also many people need to take ataxia out of the equation, as life isn't all about ataxia. An ataxian can be healthy or chronically ill dependent on many factors.
yes i have been told i have cerrebela ataxia and i was under an ataxia specialist sheffield dr hajavasalou
Jonas Cepkauskas said:
Here is a prime example of the proverbial can of worms. Have you been diagnosed with ataxia? If so, this is an issue far beyond any GPs comprehension. Were you seeing your doc about something other then ataxia? No matter what relationship you have with a GP, or other doc, neurologist, etc., when it comes to ataxia - game over. Other than an ataxia research neurologist, or a movement disorder specialist, you are wasting time, money, and effort. The vast majority has no clue, or are just guessing...SERIOUSLY!
Ataxia is NOT a sickness, it is a condition. Many refer to it as a disease...I DON'T. It may be a matter of terminology to many, but it is a glass half empty-half full kind of thing, and it may be the difference between living semi-normally or doomed, depressed, and defeated. Also many people need to take ataxia out of the equation, as life isn't all about ataxia. An ataxian can be healthy or chronically ill dependent on many factors.
i have all paper work plus papers relating to a overdose of chemo administered by mistake
Jonas Cepkauskas said:
Here is a prime example of the proverbial can of worms. Have you been diagnosed with ataxia? If so, this is an issue far beyond any GPs comprehension. Were you seeing your doc about something other then ataxia? No matter what relationship you have with a GP, or other doc, neurologist, etc., when it comes to ataxia - game over. Other than an ataxia research neurologist, or a movement disorder specialist, you are wasting time, money, and effort. The vast majority has no clue, or are just guessing...SERIOUSLY!
Ataxia is NOT a sickness, it is a condition. Many refer to it as a disease...I DON'T. It may be a matter of terminology to many, but it is a glass half empty-half full kind of thing, and it may be the difference between living semi-normally or doomed, depressed, and defeated. Also many people need to take ataxia out of the equation, as life isn't all about ataxia. An ataxian can be healthy or chronically ill dependent on many factors.
Who on earth gave you a mistaken dose of chemo?!
jason conrad jones said:
i have all paper work plus papers relating to a overdose of chemo administered by mistake
Jonas Cepkauskas said:Here is a prime example of the proverbial can of worms. Have you been diagnosed with ataxia? If so, this is an issue far beyond any GPs comprehension. Were you seeing your doc about something other then ataxia? No matter what relationship you have with a GP, or other doc, neurologist, etc., when it comes to ataxia - game over. Other than an ataxia research neurologist, or a movement disorder specialist, you are wasting time, money, and effort. The vast majority has no clue, or are just guessing...SERIOUSLY!
Ataxia is NOT a sickness, it is a condition. Many refer to it as a disease...I DON'T. It may be a matter of terminology to many, but it is a glass half empty-half full kind of thing, and it may be the difference between living semi-normally or doomed, depressed, and defeated. Also many people need to take ataxia out of the equation, as life isn't all about ataxia. An ataxian can be healthy or chronically ill dependent on many factors.
Oh my goodness, we are playing with words here and running around in circles.
If ataxia is not an illness, a disease or anything else, why are we here on a forum on rare diseases? Why are we dizzy, suffering from movement disorders and more?
Let’s be real here, we are not well… call it what you want,but don’t give up.
What forums or what medical people refer to it as is different than what I do. It is strictly a mental thing. The medical community is based on numbers, odds, and statistics. They are beaten all of the time. Unexplained recoveries and remissions. People living years beyond what a doctor's 'odds' gave them. Many ataxians doing much better than they should, some declining more rapidly. Why? ATTITUDE!! Attitude is everything! It is how you look at things. I choose 'condition' or 'disorder' over 'disease'. To me, it's a lot less dooming and less negative. It works for me, and probably works for many others. I guess I don't understand the running around in circles thing.
I respect your opinion Jonas, but it is not strictly a mental thing. When an MRI shows a lesion on a brain, the fact is there. It is abnormal.
Whether you call degeneration of the brain a disease, an illness or another word, it is there.
A good doctor usually does not like to tell how long we will live or whether we will ever get better or not, but if you insist on knowing, he will give his opinion based, as you said, on statistics. They have to have a point of reference. However, he will probably add that everyone is different. Yes, there will be unexplained recoveries and remissions. Attitude has, without any doubt some role to playi in it, but also things like your general state of health, your life style etc…
Also we are all wired differently, we are born fighters or of shy nature, anxious or bold, with fragile or strong health, optimistic or pessimistic, and some of those traits cannot be changed, no matter how hard we try.
The speed at which a “condition” progresses or not does not depend just on attitude. For instance, some ataxias are more virulent than others. Same with cancers…Sometimes, we can stop the progression, sometimes we can’t and all we can do is try.
I am glad you are a fighter. I am sorry if I offended you. I wish you well 
Cicina...I never get offended....I put info out there for people to take or leave as they see fit. Sometimes I need to clarify, but what works for me doesn't always work for others. I just try to put a different spin on things...no harm no foul ;-)
Thank you Jonas. I do appreciate your comments. Glad I did not do any harm Take care. I like people who say what they think, even if I do not agree.
This my third attempt to answer. Either my computer is bad or this site. Basically Iam in the midst of this identical discussion now with my drs. and husband, Are my responses to ataxia more emtional than physical? They agree that I have "a little something" but I have made it infinitely worse with my poor attitude and obvious trauma at learning this. Not sure because I feel the dizziness and the speech disorders, and these are REAL sensations, but I am going with this "lighter" approach. What the hell.
Hi Cicina!
I would like to second everything you've said.xB
An MRI proved I had Cerebellar Atrophy, shrinkage that will be degenerative
and progressive. If only it was a mental thing and could be overcome by attitude.
I've overcome a lot of things with positive attitude including depression but
Cerebellar Atrophy is totally different, for instance once an apple has started to
shrivel there's no going back. Yes in some cases it seems the condition may be
halted, held in obeyance, a lot seems to depend on the particular type.
If only they could figure out how to reinstate the Cerebellum.
Because of my particular experience, this is how I feel.
Cicina said:
I respect your opinion Jonas, but it is not strictly a mental thing. When an MRI shows a lesion on a brain, the fact is there. It is abnormal.
Whether you call degeneration of the brain a disease, an illness or another word, it is there.
A good doctor usually does not like to tell how long we will live or whether we will ever get better or not, but if you insist on knowing, he will give his opinion based, as you said, on statistics. They have to have a point of reference. However, he will probably add that everyone is different. Yes, there will be unexplained recoveries and remissions. Attitude has, without any doubt some role to playi in it, but also things like your general state of health, your life style etc....
Also we are all wired differently, we are born fighters or of shy nature, anxious or bold, with fragile or strong health, optimistic or pessimistic, and some of those traits cannot be changed, no matter how hard we try.
The speed at which a "condition" progresses or not does not depend just on attitude. For instance, some ataxias are more virulent than others. Same with cancers...Sometimes, we can stop the progression, sometimes we can't and all we can do is try.
I am glad you are a fighter. I am sorry if I offended you. I wish you well :-)
Thank you Beryl. You know the French, they have to say what they think, but I am always afraid to stir
up some controversy here.
I think that eventually, through stem cell research, they might be able to help people with Ataxia. With so many types of Ataxias a cure might be difficult as one kind of cure might not fit all. Control Is probably more realistic.
Meanwhile, we need to keep our chin up and keep laughing. Not always easy, but it does help us and our families and friends.
Take care and stay well.