I am happy to say that my story was shared on the Rare Diseases website and that Radiation Induced Lumbar Plexopathy is now listed amongst their rare diseases. This is a step in the right direction to have acknowlegment and understanding of RILP .. we need to understand the symptoms so that diagnosis cam be … More Rare diseases
Just a little catch up with a few pictures of what I have been doing.
One thing I love is flowers, so a day spent at the botanical gardens is the best . These are pictures from the Winter flower exhibition in the Calyx greenhouse…just beautiful
My daughter is very good at finding things that make my life a little easier. One of the difficult things is to carry hot drinks and wheel my wheelchair, its a very easy way to get burnt. This little thermos with a tea strainer inside is a great way to overcome this hurdle. I can … More Learning to adapt
The drama that occured three months ago, after I left hospital, felt more like one step forward and ten steps back!! Leaving hospital I then started outpatients physio twice a week. One on one for two hours each session. It was really good and I continued with my strength, stretches and wheelchair skills. Coming to … More One step forward and two steps back!!
I am sorry to say it has been a very long time since I wrote a post, 2016 has been a very up and down year with our family, from great events to very sad times. In all this I lost the urge to write even though I had created posts in my head I … More I am still here!!
http://www.macmillan.org.uk/documents/campaigns/cancer-then-now-report-final-online.pdf This is a link to a report from MacMillan about the side effects of cancer treatment …. Cancer then and Now… There are so many side effects of cancer treatment that affect people’s quality if life however often they go unmentioned.. This report brings some acknowledgement to these side effects that many of us live … More Report from MacMillan re the effects of Cancer treatments
Yesterday I got to ride a hand cycle, great fun and I hope I will be able to do it again. Have also done some yoga and played bowls. Have been getting the chance to try out some adaptive sports … So far enjoyed the hand cycle the best..
First I have to say it has been a while since I posted very much. It was not till a lady emailed me to check that I was ok that I realised i had been quite quiet. This wheelchair life is a bit of a roller coaster and although I set off at the beginning … More What has been Happening??
This is a poster created to find others who may have Radiation Induced Lumbar Plexopathy … Have you had Pelvic Radiation? Are you having difficulty walking? Do you have Peripheral Neuropathy? Do you have Pelvic Radiation Disease Symptoms? You may have RILP …