I am sitting at the computer waiting for Jill’s massage to be completed. She has been having a massage each Friday and almost goes to sleep after it. Jill’s physio has been coming 3 times a week and on Friday it is a double session with the second half a massage. The things she has Jill doing I didn’t think would be possible. Using the gutter frame and with either Bec or me walking as support and the wheel chair coming behind – Jill has walked 10-12 metres down the passage and then back again. Some days it is great and others not so. Lots of side way stepping, walking forward and then back – using the gutter frame for support. Using the chairs we brought back from China to do leg strengthening exercises as well. We also do a range of leg and upper body exercises in the morning after the shower. The whole morning disappears very quickly.
Our TCP ( transitional care package ) runs out on the 5th Dec . They are trying to organise another package and we are suppose to be on the top of the list. When the package runs out we then have to hire the wheel chair and the Sara steady until he package becomes available or the equipment funding through SWEP becomes available.
We had our first outing in our Jeep since May as Jill was unable to bend her leg and the wheel chair made it difficult. We had a trial on the Sunday – Jill wanted a soft serve cone from Maccas . On Monday we had an appointment at the doctors and all went great. These are all in preparation for our next goal – Christmas with Riley and the arrival of our new Grand ? about Jan 2nd.
We have organised an appointment with a neurologist in Melbourne that a few of MSA patients have seen. The appointment is on Jan 7th . She is Dr Kelly Bertram at Neurology Network St Kilda Rd. Jill is never keen on seeing doctors etc but it is quite some time since we have seen a neurologist and our GP thinks it would be benificial.
Since we went to China in 2009 Jill has suffered from a symptom called Nocturnal Stridor which is caused by a narrowing of the airways, when we came back from China Jill had a sleep study done and from then she has had a CPAP positive air machine.This certainly made a lot of difference, not only for Jill but I was able to get some sleep. Since she was in hospital from May 2012 the stridor has become much worse – I blamed the use of the CPAP machine but after coming home I can appreciate how bad it has become. I have mentioned it to our doctor and specialist both suggested getting the CPAP checked – but because it is the latest I had not worried . I have spent the last 3-4 nights changing Jill’s position, increasing the elevation of her head etc but the stridor has even increased. The effect on Jill is being very tired during the day and going to sleep at the table but once asleep the stridor starts again. She also has developed a very sore throat and her voice has become very horse and she is using it much less. I intend to see the CPAP guru on Monday and see if there is any change they can do to the air pressure. I have spent this morning looking at the internet and there have been some studies done where there is some improvement in stridor when the positive air pressure is increased.
On a positive note about 3-4 weeks ago I ordered some MSA bracelets from Kym Crow in USA . Kym’s mum Connie Lopez was diagnosed with MSA-C in 2010. When Kym came home to care for her mum in May 2012 she found her mum had ordered all these beads. So she taught herself ( and not being very crafty) and it has grown from there . She has sent her bracelets all around the world and has been donating bracelets for fundraisers in hope it will spread more awareness.
On a much sadder note Kym’s mum lost her battle with MSA in November and has joined the MSA Angles. Kym our thoughts and prayers are with you and your family.
HELP BRING AWARENESS, ONE BRACELET AT A TIME
MSA Awareness: http://www.msaawareness.org
If you would like to order bracelets :
http://msaawarenessbracelets.weebly.com/index.html
This blog has gone over a couple of days so I had better finish.
See you soon on the net.