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Ataxia Support Network

Nothing else that can be done


#21

Lumex RJ4718B Set n’ Go Wide Height Adjustable Rollator

Jim


#22

Another rollator to consider is the Swedish made Volaris.

I have used one for the last few years (the large heavy duty one) and it covers most terrain without difficulty while allowing me to walk inside the unit. I need it for guidance, not support, and the design allows me to maintain normal gait and posture.

It appears to be much sturdier than the Lumex however the price is considerably higher.


#23

I fully agree. The physician’s role is to provide information, the patients role is to decide what to do with it. It does take some work because physicians will often use rule of thumb guidelines to treatment that they have learned in medical school which may be outdated and are based on population studies which are not particularly relevant to individuals. Unfortunately patients are dealing with asymmetrical information and the internet is filled with misleading advice. One reliable site is the Cochrane collaborative, there are others, for unbiased reviews of treatment options.

I too was reluctant to see a neurologist once I was informed of my diagnosis but did so for two reasons: the hope that they could me abreast of new research and the hope that they could learn something from my case that might benefit others. They generally don’t see that many cases of Ataxia in their practices and this may help to spike their interest in this illness.


#24

Hi Beryl…I live in the US, and healthcare has been, and still is, hotly argued and debated inn this country. As you know, we don’t have universal health, which essentially translates into " you can get the best care money can buy". However, I am able to see any doctor or specialist I want to without any long waits. I’m extremely fortunate that my employer has an excellent health plan. My contributio is somewhat high, but my employer’s contribution is even higher. I don’t have a gate keeper- meaning that I don’t have to get a referral from my primary care physician to see another physician. But not all health insurance plans are equal. My significant other has a plan with a gate keeper. I do believe that health care is a right of all human beings and not a privilege; but the thought of the possibility of having to wait 6 months to a year to see a specialist is scary. Some people don’t have the luxury of waiting.


#25

:slightly_smiling_face: You are so lucky to have easy access to medical professionals. My local Ataxia Centre closed it’s doors in the Summer, because the only resident Specialist Neurologist moved on elsewhere to do research :neutral_face:
AtaxiaUK recommend that every person diagnosed with ataxia should be reviewed at least yearly by their Neurologist. But, in my area many appointments have been cancelled due to the above closure, it could be an extremely long wait to see any Neurologist in future, and that person may not have a special interest in Ataxia :neutral_face: Patients could ask to be referred to another regional Ataxia Centre, but for many people the cost and inconvenience of travel etc may well put this out of reach.
Earlier this year, I ‘pushed the boat out’ and travelled a few hundred miles in order to get a 2nd opinion… I didn’t learn anything new, but I was given an appointment for a review next year :slightly_smiling_face: xB