I’ve said this before but it is the thing that bothers me the most about Ataxia. It stinks having Ataxia in the first place but the thing I hate the most is having any healthy professionals and other folks giving me advice about physical problems because they know and understand. BS!!!
I won’t go into detail but I ran across this yesterday. How in the world can anyone understand when they can only know what they know? Sorry to vent.
This morning I talked to my uncle on the non-ataxic side of my family. He had not heard me speak when my ataxia was bad before and it obviously shocked him. He asked me if the weather had anything to do with it. Then he asked what I could take or do to get better.
I’ve explained it all before, and he clearly was not paying attention.
He’ll forget again the next time I’m having a good day and he’ll think I’m normal, not putting any effort into what I’m doing.
Hey Chas and Marjorie,
I completely agree with you both but also have to say there is a common theme with many/most fluctuating conditions. The attitude of “Well, you could yesterday, so why can’t you today??” I believe the lack of understanding of fluctuating conditions is massive and I have often said “It would have been easier if I’d lost a limb”, I wouldn’t have to explain, people could see the issue and therefore not have to ask. I’m fed up with people telling me I look awful when I know I look like s#@t, but they need to have a look from this side. What I have to manage is 100x worse than what they can see. Then tomorrow I can look OK, outwardly, and people forget, until the next time. I’m tempted to get me a t-shirt with “Yes, I do look like s#@t” so people stop telling me the obvious. lol But I simply smile and say “Yea, I’m not real well” and just leave it at that.
Merl from the Moderator Support Team
Even after been challenged by my present condition since the early 1990s, I can still wake in the morning and actually expect to be able to function normally. It’s just never going to happen
The urge and expectation are still there (unless I’m having a downturn in symptoms), sygnifying an underlying flicker of hope
But the constant ‘to and fro’ with symptoms can be baffling even for the person experiencing them. Some days I can look OK (apart from wobbling) think and speak as though I know what I’m doing, and basically pass myself off as being reasonably normal. But am I really doing myself any favours Most of us react to what we see, myself included I don’t have any outward sign of ‘disability’ other than the wobble, but that doesn’t mean that there’s not a constant inner battle going on in order to just function. Maybe I should use my rollator constantly, it would remind people I had ‘a problem’
Medical professionals are by nature emotionally detached, they have to be in order to do their job. Few and far between are those that are blessed with ‘a good bedside manner’ No patient likes to be preached at, bluntly told what’s best for their own good, or worse again, treated callously. I’ve often wondered how someone can make it to the top of their profession, and yet still be capable of having a demoralising effect on a patient xB
Well said folks!!! Sometimes when I encounter these unknowing people, I either just look at them with a shake of my head or just ignore them completely. I almost wish that I had a sign around my neck saying that I have a neurological condition so please bear with me while I try to cope with life. They just don’t realize how lucky they are and just take health for granted.
Beryl: I love what you said about doctors that can be so callous. They also should be required to take a course in having empathy to their patients while they are in medical school instead of a course in how to screw people and make more money!
It’s hard. You do want to encourage people to try a little harder to understand, but they really can’t. I let things go a lot because I get to feeling like I’m being a jerk expecting empathy when it’s impossible.
I even have an academic explanation for why we can’t get them to understand, because I ran across it in grad school when I was studying something else. If a phenomenon is rare, there is no ready-made script for people to describe it to others because it’s so rare. For example, I’m not Black, but I have known so many Black people and it’s so embedded in my American culture that if a Black friend describes something to me that I never experienced, I can still empathize. Because there is a vocabulary and set of circumstances that I already understand. We don’t have that with ataxia. It’s even difficult for us to talk to each other about it, because one person may interpret nystagmus completely differently than the next, even if the experience is about the same.
I think ‘interpretation’ is exactly the right word. Prior to my first bout of neurosurgery I thought I knew what a headache was, like what I’d now call ‘a niggle in the temple’, then they operated, HOLY HELL. My whole interpretation of a headache, of pain was rewritten. The medicos like to use a pain scale of 1 to 10, 10 being the worst pain ever. When they asked me to rate my pain out of 10 I said ‘15’. A nurse said to me “Ohh it can’t be THAT bad” I told her to lay on the floor and I’d boot her in the head, then she could tell me how it feels. She was offended by my comment. But then I was offended by hers too.
Trying to explain a personal experience is very individual, we maybe able to empathise, but to truly understand and comprehend can be very difficult as each individuals measure is different. In my experience expecting a comparable level of empathy is impossible because others may not have ever lived it, so how can they compare it to anything similar. I’ve found this to be very true of the medical fraternity, they like to make comparisons, comparisons that simply do not compare.
Merl from Moderator Support Team
One thing I have learned to NOT allow to bother me it telling people straight out what current issue I have.
I have medication induced ataxia as a very mild side effect to a migraine med – chronic, neurologically complicated migraines is my main disease state. Sometimes I look perfectly normal and alert but I can’t think to save my life. My mind will, literally, go blank mid-sentence sometimes. Instead of covering the lapse like I used to do I’ve learned to fill the gap in my thinking with the statement “I have a migraine, I can’t think right now…”
There was a time in my life when I would have never announced my internal pain/issues. I no longer let it bother me. I tell whomever I’m with exactly what’s going on and, if needed, why. I have found this makes my life easier, my stress less, and it often starts an interesting conversation with the other person.
I have a neurological condition and that’s just the way it is. I have found that when I don’t “pull punches” about what’s going on with me people seem to respect me and my issues more. They may not truly understand but my candor seems to force them to respect what I’m saying.
I think what bothers me most is expectation and fear of the unknown. When I wake up in the morning for a few moments, everything is or feels 'normal ’ No pain or stiffness or wobbling. Then reality sets in and I have a kind of dread wash over me. I know it will subside as the day progesses and I get on with the day. Some are better than others but I wonder where it is heading . People don’t understand and none of us do unless we walk in anothers shoes.
What bothers me the most is people assuming I’m drunk, and me trying to explain for the thousandth time what ataxia is. I’ve had cops shake me down when trying to walk w/o my cane when I bikeride to the store (I just bought a collapsable cane that I now bring), and stumble off my bike. Last week, I had a guy try and give me $5, as he thought I was a bum. It was 10 in the morning in front of a Rite-Aid. Gets so old that I hate going in public.
People that need my condition explained every time we meet gets tiresome for sure.
There is one person in particular that I need to go over my condition each occasion we meet (as if he has forgotten). Regardless what I say he always questions about me being sick. For one thing I’m not sick as if I have the flu or something, although hopeful, I will not get better and so on.
I have an incurable neurological condition.
Having to explain over and over again about my condition bothers me most.
But then again most ataxias are difficult to understand in all their complexities.
I think you have to explain your condition to others in terms that they can understand. Ask them if they are right handed or left handed. Then ask them what would happen if they permanently broke that arm. Ask them how would they cope. Of course this is just a thought. But you get the point.
Also, not a good idea to think “what if”. Take each day one at a time.
The thing that really bothers me is that my husband and ‘friends’ think I should be so stressed and upset about something else (a real estate deal gone bad). If they could only walk a day in my shoes they would realize that the real estate problem is so, so insignificant compared to my health challenges.
My computer is crashing; I need to replace the hard drive. So I’m writing this with my fingers crossed.
I’ve been giving this some thought. As if having Ataxia wasn’t enough, having others not understand might be worse. I can see how depression might enter someone’s life and keep them isolated from wanting to be with others. This actually is a bad idea since it’s necessary to partake what you can in life. Be with others as best as you can. Being alone all the time just leads to dwelling on your problems and that leads to depression. Just my thoughts.
Dear, today first time in public I had faced problem. After standing in line for about ten minutes, I had to go to another room of dispensary to meet doctor, Suddenly, one of my leg trumbled and some how I did not fell on the floor. By God’s hands I managed to stand half way. One day before I had taken Nicergoline tablet. Do someone has knowledge about this tablet. Please guide me.
It may be simply a coincidence that this has happened, and nothing to to with the actual medication. It is disconcerting when a leg gives way, but standing for a while in a queue may have had something to do with it.
Nicergolene is prescribed for a number of other conditions, apart from certain symptoms associated with Cerebellar Ataxia.
Was this prescribed by your Doctor Or, did you buy it over the counter yourself without consulting a Doctor Like all medications it does have known side effects, one of them is dizziness, could this have been the problem Are you taking other medications, there could be an interaction
For peace of mind, the best advice is to speak to your Doctor xB
Nicergolene was prescribed by one medicine doctor and next time I was given appointment by hospital with another doctor who disconnected this medicine. After that only once or twice I have taken this tablet. Now I am taking Calcium, B12, Vit E, D3, Pitavastatin for Lipid and multi vit tablet daily. I was diagnosed Calebellar Ataxis by Neurology doctors of Hospital and now regularly visiting Medicine Department for medication.
Is medicine department is OK for regular treatment or I should go to Neurology department again for further investigations or different medicaton. Do you recommend any more medicine for me. I was diagnosed SCA-1.
On 07/05/18 02:14 PM, Beryl_Park ■■■■ wrote: Pitavastatin
The first doctor should have told you why he was prescribing Nicergolene, and which symptom it would help.
If the second doctor discontinued Nicergolene, there must have been a reason for this. Did the second doctor prescribe Pitavastin? I advise you to go back to the second doctor, and ask him to confirm why he discontinued Nicergolene. You may have been advised NOT to take BOTH Nicergolene and Pitavastin. One or the other. Also, tell the doctor about all the medications you have taken, including vitamins.
It is always best to go to Neurology for advice on medication relating SCA1 xB
I don’t know! Maybe it’s age or the illness - I’m 72 - but I’m finding that I get more tired now after any physical exertion plus I’m finding that my recovering is longer.