double whammy

[pazzamadre]

Is there any research or help for ataxia sufferers who have mental problem as well.

[wobblybee]

Hi franrocco🙂

Many of us have depression as a symptom, is that what you mean? 🙂xB

[pazzamadre in reply to wobblybee]

Hi Wobblybee. Yes my daughter has depression, but also panic atacks and anxiety all before being diagnosed 6 years ago with celebral ataxia, and now dementia, she does not agree to having ataxia most of the time.

[wobblybee in reply to pazzamadre]

It's not that uncommon for people to be in denial. Has she actually been diagnosed with dementia, in addition to Cerebellar Ataxia?

As well as physical symptoms, ataxia can effect our perception in a lot of ways, I speak from experience, there was a time when I really thought I was losing my mind. As it happens, I wasn't but I did get very low.

There's a very helpful fact sheet, log onto ataxia.org and click on the fact sheet box. Scroll down and click on 'Cognition and Emotion'.

😊xB

[pazzamadre]

Thanks Wobblybee, she has been diagnosed, I'll take your advise and look at the Web site.👍😐x

[Hidden]

Hi franrocco. I have Cerebellar Atrophy and Ataxia with a Neuropsychological condition called 'Cerebellar Cognitive Affective Syndrome'. I'm quite sure wobblybee is directing you to the web page on ataxia.org with information on this condition. The condition affects thought processes and emotions. A good few years back I suffered from extreme depression. I eventually got to see a clinical Psychologist and after a few visits I underwent sessions of cognitive therapy which helped me immensely. Good luck. I hope the info helps?

[pazzamadre in reply to Hidden]

Thanks Iain25. Food for thought, I'll look into that. My daughters memory is now below 50% of normal.

Best wishes F.

[jneilw51]

Hi, Franrocco. If there is one thing that I have learned about Ataxia (Much of which was from this site), it is that it can interact with, or even cause, other physical problems. Now that doctors tend to be extreme specialists in one field, Neurologists would expect to be consulted about issues with Ataxia, while Psychiatrists would be the experts in dealing with psychological and emotional issues. Where both types of issues are suspected, it seems to me the the most logical course of action would be to have a diagnosis from both a Neurologist and a Psychiatrist. I would try to find doctors who would agree to consult in trying to develop an accurate diagnosis, and treatment plan, for your daughter. If they can not give you a satisfactory answer to your questions, I would ask them if they could refer you to another doctor for a second opinion. I mention this option of getting another opinion because my doctors have not been very willing to consult with other doctors outside of their own specialty. They may not do any more for you, but I think that it would be worth a try. Althogh my doctors don't agree with me, doctors are not always right, and it just makes sense to me that a Psychologist should know which symptoms appear to be more likely Psychologically-based, while the Neurologist should have a good idea of which symptoms are more likely related to the Ataxia. If they discuss their ideas with each-other, I would expect that they should be able to develop a pretty-good picture of what probably is happening in your daughter's case. In any event, I sincerely wish you, and your daughter, the best of success in finding some answers, and some help.

[pazzamadre]

Hi Jneilw51. Thanks for your comments, you're very perceptive, and guessed the problem.

[scruffycat]

Thankyou for the most informative discussion I've read in a long time. And, it's good to know there's sense out there.

[february]

Dear Pazzamadre, I take an antidepressant daily which helps balance chemicals in my brain, as if one has a chronic illness they can suffer from depression. I was diagnosed with my ataxia twelve years ago (unknown cause, symptoms 24/7, progressive), but had very minor symptoms starting about eight years before diagnosis. I originally started taking my antidepressant for another problem years before my symptoms of ataxia. Although my neurologist denies this, I feel there could be some connection between depression and ataxia (just MY opinion). Other's advice is excellent and hopefully will be helpful to your daughter...,my best...,;o)

[silkwood]

I've got both but no cognitive problems.A double whammy as you say.Difficult to

separate the two as the brain is involved.

[pazzamadre]

Hi february. Thank you for your reply. My daughter has a similar history to you, and has also taken antidepressants for quite a few years, even before being diagnosed with ataxia. I had to badger her surgery for years before finally she was referred to a neurologist. People in general think she's drunk, even her GP at first thought she was drunk with her slurred speach, battered appearance and shakey hands.

I'm very weary from the years banging my head against a brick wall with medical professionals, I'm thankful that at least now I do have the support of the Adult Mental Health Services, who are trying to understand her condition and have put some services in place i.e. a carer/cleaner.

Best wishes to you february ☺

Thank you everybody for your helpful replies

[PGee]

 I could suggest stop watching the news and reading the newspapers (that makes me feel better already), don't watch EastEnders and Coronation Street (so depressing!!!!) but if possible socialise more or exercise if possible.  Then what is left, is the Ataxia.... then, one takes the anti-depressants! 

Glean all the funny parts out of Readers Digest (oh out of print) at the Doctors surgery when waiting for appointments after waiting for many days, weeks, months... Umm, what was I going to say next?  Stop taking the anti depressants and start eating carrots for the memory?... no, sorry, that should be for the eyesight.  Keep a diary!  Share jokes! Laugh!  We don't do that enough!!  (which friend can I share the latest with??)

Some of the best help that I have learnt over time, that it is good to share things (whatever) with others and that we are not alone....  In some weird way, it is a comfort to know that there are others going through similar things.  It is hard to share and sometimes depression makes up retreat to our deep and dark 'holes'.  Sometimes folk won't understand us... and that hurts.  Take some risks and try! (to share)

I think what suits me, might not suit you and or your family member - and being able to decide a possible path, will allow one to feel a sense of empowerment and control - which, may not be possible in all areas...   Now I need the remote control so I can watch Countryfile and Gardeners World... where's Nigel???? 

I hope that you get more replies to your questions about research.  I am useless on that!!

[pazzamadre in reply to PGee]

Thanks PGee.  My daughter, has paranoia, anxiety, denial, vulnerability.  I've managed to get her carers 3 times a day, a cleaner and the her Social worker from Adult Mental Health Services, visits a couple of times a week, so for the moment she can stay in her home.  All of these workers are lovely people doing a great job, but none have understood the problems that Ataxia causes.  An OT even said 'do I think someone is hitting her', ridiculous!  I've had explain many times her slurred speech is NOT because she drunk. There is no support forthcoming from Neurology Newcastle, and they are supposed to be leaders in the UK on Ataxia.   My GP has advised me to join a social group for carers, for my own sanity.

Sorry PGee you can tell from my rambling I'm a very  pazzamadre (mad mother).   Hoe you are OK  

[PGee in reply to pazzamadre]

No you don't sound like a pazzamadre to me, just a worried caring mother.

[pazzamadre in reply to PGee]

Thanks PGEE.  Look after yourself