A lot of people cope quite well with their ataxia. However it can cause mental and psychological problems to others. They may experience anger, anxiety, fear, frustration, helplessness, isolation and uncertainty. All those feelings can eventually lead to depression.
Have you suffered from depression because of your ataxia? What help did you have? What medication were you on?
I have said before that for me the depression and the loneliness is worse this time of year I guess because the days are shorter we have thanksgiving and Christmas.i don’t take medication anymore because it just makes me sleep and makes me more depressed when I wake up!
The best medication would be someone to share things with.
Most of us will be able to relate to Deo's very apt description. On top of this, the time of
year really doesn't help, with not much sunshine (here in the UK) and short day light hours.
A lot of us, me included, spend hours alone every day. I'm always glad when my husband
comes home from work, although he should actually be thinking of retiring, he's always
tired.
Most of the time I manage quite well, I'm happy in my own company and can keep
occupied in various ways, that is, for as long as concentration permits!
Life was difficult to handle until I started on an anti depressant. I only take 50mg
of Sertraline daily but it has literally turned my life around. Of course, the fact that
I've managed to come to terms with ataxia is probably significant. Coming to terms
with it doesn't mean I've given up, I live with it and tolerate it, that's all. In the main.
I'm at peace with myself, I no longer force myself to attempt things I know will
only frustrate me and cause a sense of loss. I only focus on what makes me happy. xB
I, too, have suffered from depression and anxiety (according to my shrink) although I never actually felt depressed like staring at the ceiling for hours in a state of catatonia. My mom used to have that kind of depression and even with drugs, the only thing that pulled her out of it was my dad, telling her that she was being a drama queen.
I take 200 grams of Setraline per day (here its called Lustrall) as well as one tablet of Clonex (that clonopin) before bed. Frankly, I dont see that the Lustrall has done anything for me and I am addicted to the Clonex. If I forget to take it, I feel miserable, like at sea with no life vest and surrounded by a million sharks!!.
When I feel tired, about 2:30 pm in the afternoon, I avoid taking a nap because I feel worse when I wake up. Unlike Beryl, I am totallly not accepting of my situation.(Not good) I am constantly trying new things and pushing myself. I find that nothing helps. I go to a shrink who fills the air with bullshit from my subconscious. Who cares? He told me to get a cane pronto but the neurologist advised me to stay off devices for as long as I can. Conflicting advice!!!The only thing that helps are activities that make me feel "normal" such as trips to the hairdresser, coffee shop and movies and my daughter's home. I am still trying to gauge what is the difference between sadness and depression. In health all, N
I have said before that for me the depression and the loneliness is worse this time of year I guess because the days are shorter we have thanksgiving and Christmas.i don't take medication anymore because it just makes me sleep and makes me more depressed when I wake up!
The best medication would be someone to share things with.
I don't feel I suffer from depression. But my feelings and emotions are off. People get upset with me in the choices I make. I guess I do have all of the above. But I'm not depressed. I do know that having ataxia makes me sad.
Yes, but how do you know when its depression or sadness?
Lori said:
I don't feel I suffer from depression. But my feelings and emotions are off. People get upset with me in the choices I make. I guess I do have all of the above. But I'm not depressed. I do know that having ataxia makes me sad.
Well I function in everyday life. I go out all the time. And have a good time. I do get happy. I'm funny. And have a wonderful family. Last night I was sad. Because my son and boyfriend bowled. I use to be a real good bowler. But not no more. We still had a good time. So that's why I don't think I'm depressed.
Depressed? I'm not depressed. If I was depressed, where was the “black cloud”, the pain, the inability to get out of bed that I had heard about? Degrees of depression never occurred to me. Life just seemed like a lot of work, visions of swimming through gelatin, my worldview was kind of flat. Surely I could mind–over–matter that.
For a time after my diagnosis, I tried every non-pharmacological treatment for depression I could think of. It didn’t help. I had resisted resorting to prescribed antidepressants because I thought my depression was specifically due to the onset of my Spinocerebellar Ataxia and recent retirement, and consequently, not responsive to pharmacologic treatment. I still slept well (neither too much or too little), hadn't gained or lost weight, maintained a healthy appetite and didn't feel like biting anyone's head off–too often. But, focusing on people who were worse off and how fortunate I was not to be: in pain, terminal, single, financially strapped, friendless, childless, etc....didn't seem to matter.
I also had a bias against antidepressants. I believe they are overused in this culture on people who aren't happy 24-7, rather than being reserved for people experiencing a genuine depression. I think I also had a fear of dependency and that was part of my aversion too. "Oh for Gawd sake," a friend chided, "it's not as if you're on heroin!"
I had breakfast with another friend who was prescribed antidepressants after her heart attack and it helped get her life back in balance (not my kind of balance). She thought I was showing signs of depression and should consider treatment. I had been thinking about it for awhile and her input was another outside perspective. In retrospect, combining antidepressants with counseling might have been more efficient, but my "can do" attitude, usually an asset, became a (uh) handicap. Maybe just one regimen would help me snap out of it. So I told Earl (who had been waiting to hear it from me) that I thought I needed some kind of intervention, thanked my friends, and called my neurologist.
Usually responsive, I didn't hear back from her. Did I really email her or just think I did? I spend so much time in my head, that's a common occurrence. Just as I was about to call, in came her email response. My correspondence had been sent to her spam folder. As she said, "The very last thing I wanted to tell you was that you were being dumped into my junk mail–that seemed like just too apt a metaphor for life for someone struggling with depression.....but I know that your sense of humor remains intact, even if it has been strained lately." So, I looked around for my missing sense of humor, started a course of a selective serotonin re-uptake inhibitor (SSRI) antidepressants and waited.
“Outing” my depression and treatment plan rather than to deny it to family and friends helped. Even though they may have wanted to, no one said, "Well, duh!" Just as situational depression can be subtle and the onset gradual, so is the treatment effect. I had been warned that response can take time and that an SSRI isn’t an amphetamine. But, I wanted to be better instantly and eagerly watched for any sign of improvement. I was like a pot of water on the stove. Jeez, I wasn’t used to being emotional and it was so ...depressing! Before the Ataxia, I didn't like being "handled". Now, people thought I was fragile and treated me accordingly. I probably was, but that really pissed me off.
So, am I better after a treatment course of SSRIs? After a while, life seemed less like work, more like a manageable effort. I aimed for a balance of my cheerful and cranky sides. I didn't have visions of swimming in gelatin anymore. A mobility scooter helped me enlarge a world that was progressively getting smaller. Those were my major benchmarks, so I began the tapering process off antidepressants rather than just abruptly stopping treatment. But, my Ataxia will always be evident and progressive, so it's not likely that I will ever need to plan a celebration party. The occasional private "Pity Party" is more likely (previous post). My good days are more frequent than my bad days. Yeah, I'd say better–not great, but better.
The lesson: Even situational depression is not a "snap out of it" thing.
I see. I guess you are not. Bowling also makes me sad but it's probably good for your hand muscles and general sense of balance. Never thought of it. N
Lori said:
Well I function in everyday life. I go out all the time. And have a good time. I do get happy. I'm funny. And have a wonderful family. Last night I was sad. Because my son and boyfriend bowled. I use to be a real good bowler. But not no more. We still had a good time. So that's why I don't think I'm depressed.
I get anxious about all sorts of things. A lot of the time, I don't know what I'm anxious about. Familiar at all?
scrffycat9 said:
I get anxious about all sorts of things. A lot of the time, I don't know what I'm anxious about. Familiar at all?
Neta, Last week my son bowled with his boy scout troop. On the lanes next to theirs. There were blind people bowling next to them. That I could not really understand. But who am I to say. But anyways. Poles were set up on the alleys. They walked down the alley holding on. I wanted to join them. Im going to call the plase and see if that was there poles. Or the peoples.
Yes. I get anxious too. My main neuro told me a while ago that this is all a function of the ataxia. N
scrffycat9 said:
scrffycat9 said:I get anxious about all sorts of things. A lot of the time, I don't know what I'm anxious about. Familiar at all?
I struggled with depression badly for years before my Ataxia was diagnosed.Now I am wondering if it was a pre cursor.
I took Citalopram and am still on it.It certainly has helped.Laately the doc has upped it to 40mg as I kept bursting into tears because of the frustrations of Ataxia.There are quite a few on this site who have had depression.
I think in my case it is a chemical thing but my sympathies go out to anyone suffering this.I think sometimmes it gets mixed up with the moral.Either way it is a little known problem and little understoodand it is quite common.It does go away and you can look back on it.
I've told my story before, so sorry to those who've already read it...,ha! I've been on an anti-depressant for 19 years. I take 200 mg (therapeutic dose) of Zoloft (generic Sertraline) daily. Originally, I was born with an cardiac arrythmia that really started giving me trouble in my 30's, after the birth of my second (and last) child. My internist put me on the drug Inderal which has a side effect of depression. I fell into a deep depression, eventually had cardiac surgery, which repaired my arrythmia, was feeling better, and then found out my husband had terminal cancer. Therefore, I stayed on the anti-depressant. Eventually he died and I went from working part-time to full-time and raising our children who were 12 and 14 when he died. My children are grown now and ten years ago (at 49) I was diagnosed with ataxia. I've stayed on the anti-depressant and believe it has helped me. It's not a happy pill, it just balances the chemicals in my brain and helps me deal better. MY best to you.... ;o)
I started this discussion in order to find out how you are psychologically coping with your ataxia. I am pleased to find out that many people believe that living a good life is an entirely reasonable aspiration even with ataxia. However, for some, ataxia can cause mental and psychological anguish that comes with unanswered questions, stares of curious people, the fear of choking, and the progression of the disease. I believe many people already know me on this site. I am writing a brief story for those who have not read about me before. I am a social scientist, nutritionist and therapist. I was a Nutritionist in the food supplement business and also a therapist for Anxiety UK. When my ataxia symptoms started it was complete devastation. I started losing my balance, my coordination was bad and I was choking on my food. I struggled to keep my speech but it was in vain. My speech was all I needed in order to keep working as a therapist. My accommodaton was linked to my job. So when I lost my job I lost my accommodation as well. I used my experience as a therapist to keep my mind stable. Unfortunately there are so many unanswered questions like negative genetic tests, colour blindness, night blindness and so on that brought anxiety, fear, frustration, helplessness, uncertainty and isolation in my life. All those brought on what the doctors are calling 'depression' in my life. Being alone in this fight, with no family around me is making things worst. I have now been prescribed with 40mg of Citalopram which I am still reluctant to take because I still believe I can cope. This is how devastating life can be for someone suffering from ataxia.
So sorry you are having such difficulty, Deo! My ataxia affects my gait/balance, dexterity (writing/printing/fine motor skills), speech (slurred) and swallowing (sometimes coughing/choking). Even though ataxia is extremely frustrating and challenging, I refuse to let it define who I am as a person. Although my ataxia has progressed, I'll never give up or give in...,guess I'm stubborn that way...,ha! I was diagnosed 10 years ago when I was 49 (59 now), and I have no idea why I have this. No one in my family, as far back as we know had/has ataxia, except me. I consider myself to be "special"...,ha! I try to have a positive attitude, as I can't control having ataxia, I can control my attitude. Don't get me wrong, I do occasionally have mini-pity parties, but they're short-lived, as I concentrate on what I can still do, rather then what I can't! I hope you come to terms with your ataxia, Deo, and find the peace you so deserve..., ;o)
Three years after getting this, a horrible bout of depression . I spent 3-4 days
in tears . I have never experienced any thing like it .My husband was concerned
and wanted me to see family Dr. ,I told our family Dr. that I needed serious help .
More than he is able to give .
He revered me to a physiatrist , I saw her for several months. She was very
good. and put me on a anti-depressant . . She gave me a routine that I followed
with her .It was all that I learned during her treatment . I am able to keep it at bay
when it rears it's ugly head . Good Luck !
MaryElena