Tag: Assistive technology

Posted in Archive, January 2022, September

Day to Day Management

Posted on by dystoniaandme

No day is ever the same when living with chronic illness. The routine may be vaguely the same but each day revolves around adapting to what symptoms are presenting that day and the severity of them in the moment. What may be rather bad in the morning may be insignificant in comparison to another symptom by midday

A good example of this is today. Sundays are always our family rest days. We go to church, sometimes have family to us but generally speaking we are at home together. Now I was already shattered after a bad night sleep with nerve pain in lower right leg and lower back pain. However upon getting up my neck spasm started pulling my head down towards my shoulder. It’s a particularly nasty spasm that’s hard to break. I have a percriped Aspen collar for when my neck does which I alternate with wearing a TENS unit and a heat pack.

Picture of me ready for church wearing my Aspen collar to been help support and straighten my neck

I’ve not had to wear this collar in a while. The overly nervous me did my best to disguise it with a scarf as we sent out for church. It deffinently took some getting used to wearing it out and about and learning to ignore the second glances once again. But it’s worth to help ease off the painful spasms somewhat.

Off to church. Scarf ‘hiding’ my neck support

My Botox appointment is extremely late this time round having being schedule for almost six months instead of three. Whilst I’m hoping for a cancilation to come up, I am in the mean time going to ask my general practitioner to allow me to my Trihexyphenidyl untill I’ve had my injections

Posted in Archive, November 2013

Peace of Mind

Posted on by dystoniaandme

The last several days have been very busy and very positive.  I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.

This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten  colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.

When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that  when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.

So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me.  Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.

Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.

Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.

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