One of the nuisance things of a blog is the spam – unwanted rubbish that some people think they should put on the Webb – this blog gets its fair share and every now and then I clean it all out. This morning while doing this task I spent some time reading all the great comments from family , friends , MSA carers and patients and I had forgotten how many comments of encouragement Jill & I received . When I started the blog it was just prior to begining our journey to China in June 2006 for Jill’s initial stem cell treatment. I originally started it to keep family and friends up to date with things while we were in China. Obviously it became more than that – allowing me to express my thoughts and Jill’s progression through MSA as well. Jill was not always happy with what I said about her as she felt it was her problem and should be kept private. I found that because MSA was such a rare disease we didn’t have much information we could access and nobody to talk to about it. Doctors, Therapists, Neurologists didn’t know much or anything about it . I can always remember the neurologist telling us to go home and research MSA information on the net as he had no written information for us. That was in 2004 and at that time there was almost nothing on the internet and quite often I would type in Multiple Systems Atrophy and our blog would come up very early in the search. As time has passed this has changed with the social media sites such at Facebook having lots of like minded sites associated with MSA as well as thousands of internet entries.
The area of diagnosis and research are still in the early stages – we were originally told that Jill “PROBABLY had MSA” because the only true diagnosis that would give a positive was after death and a brain autopsy had been done. This is still the case some 10 years later. Jill over the corse of the disease had nearly all the symptoms of MSA. Most functions relating to the autonomic system were affected in varying degrees. I am certain knowing Jill’s ability to tolerate pain and her shear strength she put up with much more than anyone will ever know. She was always more worried about me and what effect it was haven on me than her self. Her strength always kept me going.
As you will have seen in the previous blog money raised by the MSA community has been allocated to 5 different research groups. Further MSA research will be able to be undertaken as money is raised.
I actually got up this morning and thought I had better write in the blog – Slightly sidetracked but research is going to give us the answer and finally somewhere in the future a CURE.
I am writing this as I am waiting for a contractor to arrive and give me a quote on new awnings to replace those which are now torn and faded . Over the past 4-5 weeks I had decided that there were a few things that needed to be done to the outside of our home. I had the facia and eves painted and one comment was how long since this was done before . I cannot remember but over the past 15 years the house outside has been negelected. The painter has almost completed his task just waiting on some building repairs before he can finish – the roof tiles have had all the moss etc cleaned of them and the all the capping has been repointed. Because my back has been playing up again I have a gardner in to clean up the yard and finally the house will be back to new – Jill would have loved to see it. Awning quoted and ordered about 4 weeks .
See you soon on the net
Don’t forget March is MSA Month
