Do you know what Ataxia is?

Chloe_Alumni

Yesterday, 26th September, was Ataxia International Awareness Day.

A recent poll showed that only 10% of the UK population have heard of ataxia, and Ataxia UK want to change this.

Symptoms

The NHS list the following symptoms for Ataxia, with it being able to affect any aspect of the body:

• balance and walking
• speaking
• swallowing
• tasks that require a high degree of control, such as writing and eating
• vision 

What cause Ataxia?

Ataxia usually results from damage to a part of the brain that controls movement and coordination, but it can also be caused by damage to other parts of the nervous system.

This damage can be part of an underlying condition such as Multiple Sclerosis or Cerebral Palsy. It can be caused by a head injury or lack of oxygen to the brain.

Hereditary ataxia is caused by a faulty gene passed on by family members, who may or may not be affected.

Ataxia UK

Ataxia: What's That? booklet provides a much more in-depth look at the condition.

Through increased awareness, better understanding of the condition filters down through GP's and therapists, to the average person on the street. If people are aware of a condition, this means more money is likely to be invested into finding a cure. Equally better understanding will mean less instances of misunderstanding for the lives of those affected by the condition.

Ataxia is a rare group of neurological conditions that affect (amongst other things) balance, coordination, and speech. There are many different types of ataxia that can affect people in different ways.

The condition doesn't discriminate. It can affect anyone, of any age. Studies suggest there are around 10,000 people living in the UK with a form of ataxia. Some forms of ataxia are treatable, but in most cases there is still no cure.

Did you know about Ataxia? How important do you feel these awareness days are? Let us know in the comments below!

chiarieds

Yes, I knew about it having seen several children & some adults with ataxia. I think the awareness days are a very good idea. Anything that helps us all learn more about problems others face is important for our better understanding of these different disorders.

Chloe_Alumni

Hi @chiarieds, 

Thank you for sharing this with us! I agree, awareness days can be a great learning opportunity!

thespiceman

Hello @Chloe_Scope   Thank you for sharing.  I have learnt something new.

Always useful to keep in mind. Just in case a community member needs some guidance, help or information.

These are useful these awareness days because not many people know about so many of these conditions, disabilities or illness.

Thanks for bringing to the communities attention.

Take care.

@thespiceman

Swordfish

I've had Cerrabela Ataxia for over 25 years unfortunately caused by alcohol misuse, waiting for Tribunal, thanks for bringing Ataxia to the attention, balance and walking are my main problems 

Chloe_Alumni

Hi @thespiceman, I am glad you have learnt something new today! It's great to be able to support other users.

Thank you for sharing this with us @Swordfish and you are more than welcome.

pollyanna1052

Yes, a friend has it. He is often mistaken for being drunk...It`s an awful problem.

Ami2301

I have Sensory Ataxia and my symptoms began in April 2017. Awareness days is crucial in changing perceptions!

RiyadBrown

Overall, it can be noted that Ataxia rehabilitation is very important in the treatment of Ataxia. It improves locomotion. It aims to improve balance, which is the most vital to improving gait (walking). Patients suffering from Cerebellar Ataxia can use ataxia rehabilitation as a treatment for a prolonged time to achieve greater results. However, besides the severity of the ataxia, factors like Age and other degenerative neurological diseases present could influence how well this treatment works. It remains of paramount importance that patients suffering from Cerebellar ataxia work towards remaining in good health by engaging in physical and mental exercise programs such as the Ataxia rehabilitation, and in addition, they should sleep well, eat well, and avoid injury from falling.Examples include blood testing for Friedreich's ataxia or any of the testable spinocerebellar ataxias (SCAs). A specific diagnosis is useful to provide prognostic information for the patient and family.

dolfrog

I have a PubMed Ataxia research paper collection, I have not updated it over the last couple of years, but the information could be useful to some.
The link is https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/41302282/public/ 

chiarieds

Hi @dolfrog PubMed is indeed a very valuable resource, & a person could just visit the site to get up to date information on ataxia, or any other condition, should they wish. However, if a person doesn't have medical understanding, they might just feel overwhelmed by it all, finding much of it incomprehensible, or not know what might be relevant to them, if anything.

I understand you have researched your condition extensively due to the lack of understanding with our UK Drs., & I applaud you for this. I too have done the same to help our family in the mid 1980's, & intermittently since 1999, hoping to also help others. Even 'tho I have some medical understanding, this was, and continued for a long time to be an uphill struggle.....& still can be! As far as our family's problems go, I feel USA Drs are at least a decade ahead of ours.

It took me a long time to realise, altho' I had taken much medical information on-board, I wasn't successfully relating this to those with my disorder, & what i thought I'd learnt, needed to be put into words that others would understand.

So, IMHO, I feel it may be unwise to offer a medical database, where the vast majority of those on this forum are most likely not medically qualified.

Please don't take this personally, as there's an example above where some info on ataxia has been copied from the internet, methinks without medical understanding as the last paragraph doesn't read well.....something has been missed out.

Please continue raising awareness of your disorder. However, as medical opinions are not supposed to be offered, as we're not medically qualified, I also feel that medical databases may not the best resource to quote on this forum.

dolfrog

Hi chiarieds 

PubMed is not a USA only data base, It has international research as part of its data base including UK research. The USA also has many incompetent and corrupt medical professionals and professionals bodies only interested in marketing their limited services being able to continue their career funding, and ignoring the real issues. 

The problem in the UK is ignorant and incompetent medical professionals who are not adequately trained to be up to date even with UK based research. 

Unfortunately some of us are more informed regarding our complex disabilities than the professionally negligent medical professionals who work in the UK who only want to hide their ignorance, massage their egos, and maintain their income provide low quality services.

So we have to learn about our disabilities and educate the incompetent UK medical professionals.. 

chiarieds

With the greatest respect @dolfrog I didn't say PubMed was USA-based; it's a collection of abstracts (summaries if you will, of full medical papers, not necessarily research) from around the world; some having more relevance than others.

I'm not disagreeing with you in that probably many of us here know more about our disorders than our UK Drs., particularly if such a disorder is poorly understood. I've found consultants incredibly well-versed in their own field of expertise, but unable to look beyond that to understand what else might be going on.....not seeing the whole person sadly.

Whilst I've had several negative dealings with consultants, due to our family history, I wouldn't presume to generalize that our UK Drs. are negligent, incompetent, etc., so there we part our ways.

I'm sorry if I didn't come across clearly. I just felt that PubMed was a resource best not mentioned here. As I've said it's a collection of abstracts; some about clinical findings, not all about research. To better understand an abstract, the full paper should be read, rather than just this summary. This would be beyond the scope of most people not medically qualified. And how would anyone know which paper(s) 'might' be relevant to themselves or their family?

dolfrog

chiarieds 
You obviously do not use PubMed that much, as they have the Free full paper access PubMed Central where they provide he full research papers especially a year after the initial publication.
They also have a very good search index system, lwhihc lists related research again which they can also provide the full access.
Or you could copy the research paper title and authors and say ask for a free copy of the paper at say ResearchGate. 
The days of abstract only access is becoming less of an issue as many publishers are now providing more open access to explain issues. 

chiarieds

Actually I have often used/searched on PubMed, & sometimes the full paper is freely available online, or 6 months later. I am also fully aware of the other resources you mention, & have sometimes bought the full medical paper(s) when I needed them.

I was asked to write a chapter in the latest book on my disorder concerning a neurological problem that I had thought co-existed (with an introduction by the world specialist on this neurological disorder) some years ago, as no UK Dr understood it then.....providing a glossary & references. So I do know how to research, thank you.

My point was that such a resource may be poorly understood by most folks here, so better not to mention it perhaps.

Perhaps we must agree to disagree. I'll not comment further anyway.

Chloe_Alumni

Hi @dolfrog and @chiarieds, thank you for both sharing your experiences. I appreciate that people will have different opinions so thank you for sharing these respectfully.