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Ataxia Support Network

I'm not doing so good


#62

Ohh a truer line could not be said, they may make out they are all knowledgeable and it’s only the decent one’s who will admit when they don’t know, but they are few and far between. Some believe they deserve a halo, they don’t, they are human just like you and I, not Gods. If you (like I) believe they are incorrect in their diagnosis or your concerns are not addressed, find a new Dr.

Merl from the Moderator Support Team


#63

If I could add my two cents here.

I have a very good friend who is a Neurologist. It’s just a “coincidence” and has nothing to do with my Ataxia. We get together often and he saw that I was having a problem with something a couple of weeks ago. To make a long story short, he gave me some advice about something that I just didn’t accept [he meant well but he thought he knew best because he’s a doctor]. Can you say God? Anyway, his advice sucked [please excuse my choice of words] because he knows only what he knows. My 50 years of dealing with this illness gives me the best way of coping. I am due the right.


#64

And again Chas I totally agree. They often make out they know all, the fact is NOBODY knows all. But they are very quick to make out that they do. I have in fact questioned a neuro… …ohh boy, did that get a reaction and not a very nice one neither. Here we often speak of dr’s having such attitudes but having worked with many highly qualified people it seems it is not only dr’s who have such attitudes. Other individuals who have university qualifications are also very quick to hold their degrees up as being "The be all and end all’ of knowledge. They are not. A scholastic knowledge does have some regard BUT it is not where knowledge ends. As patients we have a very ‘hands on’ knowledge that no education, no study and no schooling can ever give. I believe that each and every health course needs to have a compulsory subject regarding human interaction that is administered by patients. Something along the lines of “You think you know it all, come have a look at this” and show them some of the realities of our world. It won’t happen and that I know, but it most definitely needs to.

Merl from the Moderator Support Team


#65

What you say is very correct. A truly smart person [not just booksmart] knows that they do NOT know everything and therefore listen with their ears and not their mouths. :smiley:


#66

Hey everyone, great conversation, but somehow we’ve lost track of @Dolo23. (That @ tag should send her an email that I’ve mentioned her.)

How are you doing now, Dolo? What’s happening in Coral Springs?

Seenie


#68

A lot of the same. I am feeling a little down. I’m trying to function but its hard.


#69

We were ‘enjoying’ a heat wave here in the UK :slightly_smiling_face:Symptoms were lying low :slightly_smiling_face: Then out of the blue a horrible flare up :woman_facepalming: Considering I’m not Episodic this happens on a regular basis. And, I’ve just had a second cancellation of an upcoming appointment. When I eventually get there, I plan to give someone a good grilling :face_with_raised_eyebrow: xB


#70

Sorry to hear that you’re still feeling down. You’ve been feeling this way for a while now, haven’t you? When you’ve been dragging around feeling awful for a while, it’s worth considering an appointment with the doctor to discuss how you’re feeling. Is that a possibility for you?

Looking at the brighter side, you say that you’re trying to function. That is awesome. Those of us with chronic conditions that make our lives difficult do have to try our best to function. Good for you for trying.

Here’s something that @Linda4 mentioned a while ago:

I read this thread again and took note of your comments about being constantly sad, and being tired of all this. It sounded like you may be suicidal.

Linda4 mentioned going to an ER or finding a hotline if you’re feeling so badly that your thoughts drift to suicide. (We do get concerned about people here.) You probably didn’t realize that there’s a link to a hotline right on the home page of this community! On the Home Page, look to the top right and you will see a “Help” tab. That’s where the hotline information is waiting for you. When you need it, it’s there.
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You say you’re feeling “a little down”. And like I said, we get concerned. Will you promise us that if you start feeling “a lot down” that you’ll go see a doc, go to the emergency room, or call the hotline? All of us feel a little down sometimes, but there’s no need to have to live with “the black dog” (that’s what a famous guy once called his depression) forever.

Will you promise us that you’ll reach out to someone who can help?

Seenie from Moderator Support


#71

Depression is a normal response to chronic illness. I was depressed but did not think about it much. On the advice of my neurologist from Johns Hopkins, I saw a mental health professional. He prescribed Prozac for my condition. I think I started ignoring my depression rather then cultivating it, but Prozac made me very tired and fatigued, so upon informing my psychiatrist, I stopped taking Prozac. My experience tells me that we have to be open minded to get HELP for our depression, which is a part of our chronic illness.


#72

Absolutely!! when I was having a lumbar puncture done the doctor i will call doctor lou… stated to me that “Western Medicine” will not help me!! He was so right!! since my symptoms started in 2016 I even had one neurologist say to me “oh honey you don’t need that cane” I wanted to hit him with the cane!! lol but he was right I didn’t need the cane … I needed a walker a month later because the cane know longer worked… idiot… so i’m off to Peru… all this talk about the U.S.A. and I actually have to leave my own country to look for alternative treatments… because insurance here will not approve anything again “healthy” I’ve been offered everything from prozac to pain killers Ugh… all I want is a diagnosis and a massage… what a nightmare…


#73

right but “ataxia” is not a diagnosis it is a symptom… I was or should say am an R.N. once a nurse always a nurse… lol but how or why do they try to medicate us when they don’t know why or what is causing “ataxia/gait issues” the health care system is very broken… it is really sad and unfortunately getting worse… I sometimes think it is a curse to have a medical education because "they can not pull one over on me:(


#74

Yes I will when I feel a little worse. Thank you for your concern. I will look into the hotline. I have never tried that before. Do you know what it’s like?


#75

Everyone reacts differently to anti-depressants. But there are so many types out there now (all working slightly differently, but having the same goal in mind) that if you do a little experimentation – with your doc of course – chances are that you will find something that helps. For me, it was a combination of two A/Ds. Having a chronic condition is hard enough without battling depression, especially when the depression is probably the result of the condition. Kind of circular!
Seenie from ModSupport


#76

Thanks for saying that you’ll go for help. (That helps us not worry quite as much.) I think you’re feeling plenty bad enough to see a doctor about it sooner than later. It’s easier to fix something before it is completely broken and the wheels come off!

I haven’t tried the line myself, but I know people who have (though not recently) and they never regretted that call. The people on the other end of the phone are highly trained to help people who are feeling miserable. Why don’t you call and see how it works? Tell them what you told us about feeling so down, and why you feel that way. They will be easy to talk to: their job is to listen. And who knows, they might help make you feel better, or give you some good ideas.

If you do call, please let us know what the service was like. If you do, others on this board will be grateful for the information: we all like supporting each other or we wouldn’t be here. The ModSupport people on here (Azurelle, Merl and me) would be interesting in hearing about experiences that we could share with others who are feeling really bad. You aren’t alone: Ben’s Friends has about forty communities, and we meet lots of people who are struggling. It would be great to be able to tell them about a member (you!) of another community’s recent experience with the hot line.

That’s a way of helping yourself, Dolo, and also helping others in a small, but important, way.

Seenie from ModSupport


#77

Depression seems to go along with ataxia. The standard advice for everyone is that if one anti-depressant does not work well, try another. Dolo 23, you have felt bad long enough. It is time to talk to your doctor now. I have been on a low dose of Celexa for the past 7 years. I started it because my sister,a doctor,decided I needed it as I was losing weight, had sleep problems, and wished I had died in the brain tumor surgery that started my ataxia problems. It has made a big difference. I no longer wish I would have died, and when I tried to go off it, my husband said I was a lot crabbier. I think I will take it forever. I never was depressed before you surgery, but the combination of cerebellar damage plus a disability got me. Anyway, I encourage others to get the help they need, too.


#78

I am already on medication I dont think I can handle more especially an anti depressant. I respond too well to things, really sensitive. I should really only take one thing at a time. For right now talking about things help.


#79

Hiya Dolo! Talking about things does help, and sometimes it can help a lot.

I looked up some more information for that hotline I told you about, on the hotline’s website. Look at this: this might really suit you.

Why not give them a call so that you will know what it’s like? Then, if you’re ever desperate (we hope not, but …) you’ll be less reluctant to call.

What do you think?

Seenie


#80

Talking it out really is good therapy. I haven’t contacted Samaritans or an organisation such as the above, but I did once join a Women’s Self Help Group. We only knew each other’s first names. I was desperate at the time, getting no-where with my doctor, and consequently my family didn’t make allowances or show sympathy. Whatever the actual reason for bottling things up, talking about it is like operating a release valve :slightly_smiling_face: xB


#81

I have a friend of mine [yes, he’s a friend not an acquaintance] who has tried to give me the same “advice” more than once. I’ve explained to him more than once why I can’t do that but he recently said it again like it’s the first time he heard it. :anguished: OMG! One ear and out the other!


#82

I agree, not everyone wants to bare their soul to a complete stranger, although it can actually be easier than talking to someone you know, there’s no judgement involved, more an exchange of views. But, some people are intensely private and the thought of discussing anything personal with a stranger must be like drawing teeth…

You would think a friend would pay attention :roll_eyes: xB