Hello, readers new and old – hope you are all well.
Or much better than I have been lately anyway – it really hasn’t been a great time for me, with legs giving way much more, becoming weaker, even leaving me in bed for a whole day a couple of weekends ago. Whenever I attempted to stand, my legs would just collapse from under me…
A lot of people, would think it would be great to spend a whole day in bed, not doing anything – no chores, nothing instead spending the day watching TV, films or listening to music. However, let me tell you the reality of it – it is so boring being stuck in a bed, I would much rather be doing something much more constructive than watching endless episodes of CSI, despite it being one of my favourite shows.
On topic, I was recently reading an excellent blog post regarding a person’s experience of a condition in which she describes as having ‘many voices’ and in which the community of people with the same condition is large – each sharing their own personal experiences of living with a chronic illness.
And that got me thinking of my condition – long-standing brain stem lesion and spastic paraparesis. To search information about it, is extremely difficult – most being medical journals, to difficult to understand for those without a medical degree! And the big fact that I have not met one single other person with either diagnosis.
Many of the information that can be found regarding my condition are those usually found on websites about Multiple Sclerosis, as MS can present with brain stem lesions, and spasticity of which I suffer is a common complaint within the MS Community.
However, I do not have MS, so therefore am unable to really approach MS organisations for support and information. Near to me is an organisation for people with brain injuries called Headway, however many of the case studies that I have read suggests that the organisation provides support and help for those with acquired brain injuries – usually those sustained in adulthood as a result of an accident or trauma.
So where do I turn for help and support with my condition? I feel as if I am one person, on my own living with this condition with nowhere to turn, or for people to listen and understand just exactly what I am living with day-to-day…
Image: http://www.bbc.co.uk/wales/audiencecouncil/sites/your-voice/
sparklelin
I am sorry things have gone so badly for you lately. I was thinking you might get something out of checking out this on-line group. I participated in it for a while when I was having a lot of debilitating muscle issues that were not sorted out. The group was quite international and had an active British membership.
http://www.livingwithataxia.org/
Ataxia is the name for the grouping of neurological symptoms affecting balance and muscle coordination and control. It is caused by many different disorders, some very rare, so this is a more symptom orientated group than disorder orientated.
Linda from Winnipeg
Rachel
I was just recently given the diagnosis of hereditary spastic paraparesis. I saw a podiatrist, a regular doctor, and then finally the neurologist. I had 8 MRIs, an insane amount of blood tests, and 2 EMGs. They finally came up with the diagnosis, and I am now headed out for physical therapy. To explain to anyone the pain and the discomfort that I constantly feel is nearly impossible. I just wanted to thank you for posting this on the internet. I also have neuropathy in my feel and as a result fall on a pretty regular basis. I can’t stop myself, and have no idea what to do about it. Thank you again for sharing your blog with the world. It makes me feel better knowing that other people suffer from the same thing that I do.
rhiannlouise
HI Rachel
Thank you so much for your reply. Sorry to hear of your recent diagnosis, and hope you are doing well at the moment – know how shocking and difficult as it is getting that diagnosis and knowing that it is something which is long-term isn’t easy.
I am really glad that you have found the blog helpful and makes it easier for you to know that you are not alone. I really hope physical therapy works out for you and you can gain some positive results from it. If you would like to stay in touch, I would really be happy to, somebody to vent to and talk and who understand exactly what it’s like.
You can get in contact if you wish by clicking on the envelope icon in the ‘Let’s Connect’ section to the right of the post or you can wrote to me at my other email address: rhiann_johns@hotmail.co.uk