Sorry for the few days gap. I've been in hospital at Sheffield.
Prof Pam Shaw is an expert in MND and I was there to undertake her protocol for testing MND.
What tests didn't I have? Can't imagine.
Had CT scan, MRI, Lumbar puncture, 21 different vials of blood; electo myo-cardiogram (sp?), X Rays, filled in questionnaires, talked with students, ....... It was all so professional, so kindly and I felt so safe.
Got back home this afternoon,....... will have to go back for full results in one month.
Now busy with planning for MND fundraiser on Sunday at the Platform Gallery , Todmorden...... think all is is place,,, except I've forgotten to order milk.. easily sorted will get Sunday morning..
Thanks for reading over 5000 hits as of today.
Off to bed now, need rest.
HUG ME , I'VE GOT MND
Showing posts with label Prof Pam Shaw. Show all posts
Showing posts with label Prof Pam Shaw. Show all posts
Friday, 11 May 2012
Wednesday, 11 April 2012
A BAD SLEEP
A Bad Sleep... why? Well tomorrow the assessment team come to work out possible access to my home in Tod... Don't know what will happen , but depending on what does happen I think I will know more about where I will be and how I will operate . Moving is always stressful but with MND I really think it is very very stressful! However on the plus side my friends have all chipped in and have offered to help. ... and actually I will need help, as I simply cant do much.
The feeling about the car decides me more and more that maybe a car with a hoist will be a good solution as if I have one where I can drive from a wheelchair... will I get the use?... maybe then will be the time to let taxis and friends take the strain. (Thankyou friends!!).
I had been given the number of man in Walsden who has MND ( Number given by my hairdresser) and eventually I rang him today. He has ALS and is one year on from me.We spoke whilst he was wearing his aid for breathing.. I could understand him, but it was difficult for him to hold the phone, so we didn't chat for long. He does have a partner so can use a special chair to get up his steps... but this is out for me as you do need someone to help you... bang goes independence!!!.
I also got a call from Prof Shaws secretary at Sheffield today. I am to go into hospital in Sheffield for more tests on May 9th, for two nights. Then maybe get on the new drugs trial.... fingers crossed .....and fingers crossed it works..... and fingers crossed I'm not one who get the placebo..... some people have to!
I'll end with a copy of the poster for our "a-MAY-zing" exhibition. I took it to be printed today. Parked on double yellow line, stopped by warden as I was about to set off home and was able to show blue badge... so all's well there then! Blue Badge Rocks!!!! Yey!!!
Oh NO! Just realised no proper dates!!! I'll have to go to printers pdq tomorrow!!!
HUG ME, I'VE GOT MND
The feeling about the car decides me more and more that maybe a car with a hoist will be a good solution as if I have one where I can drive from a wheelchair... will I get the use?... maybe then will be the time to let taxis and friends take the strain. (Thankyou friends!!).
I had been given the number of man in Walsden who has MND ( Number given by my hairdresser) and eventually I rang him today. He has ALS and is one year on from me.We spoke whilst he was wearing his aid for breathing.. I could understand him, but it was difficult for him to hold the phone, so we didn't chat for long. He does have a partner so can use a special chair to get up his steps... but this is out for me as you do need someone to help you... bang goes independence!!!.
I also got a call from Prof Shaws secretary at Sheffield today. I am to go into hospital in Sheffield for more tests on May 9th, for two nights. Then maybe get on the new drugs trial.... fingers crossed .....and fingers crossed it works..... and fingers crossed I'm not one who get the placebo..... some people have to!
I'll end with a copy of the poster for our "a-MAY-zing" exhibition. I took it to be printed today. Parked on double yellow line, stopped by warden as I was about to set off home and was able to show blue badge... so all's well there then! Blue Badge Rocks!!!! Yey!!!
Oh NO! Just realised no proper dates!!! I'll have to go to printers pdq tomorrow!!!
HUG ME, I'VE GOT MND
Wednesday, 21 March 2012
TODAY SHEFFIELD.
The hospital transport service collected me at 10:50. A lovely young driver named Louise. She is the same age as Chrissie , my youngest daughter. We got on really well, chatting for all the journey, which was beset by traffic hitches! Louise remained calm, and we eventually arrived at Sheffield Hallam Hospital at 1:20. Louise collected a wheelchair and took me in style to the Neuro out-patient ward.
I went in straight away to meet Prof Pam Shaw. She is an expert in MND, specializing in ALS.. What a charming, professional woman. We spent over an hour together with her doing extra checks on my eyes , mouth and all the usual ones on my limbs. I seemed to be quite strong, except when it came to legs and my poor left foot just dangled.!.. no power to even get to a right angle to my leg. It looked so sad, dangling there.
After this assessment she said that with info she already had, and with her thorough examination, she was sorry but confident that the diagnosis of MND, ALS was correct.
You may think that this would be a blow. Strangely it wasn't , I expected it but it is, in a funny way, good to know that is confirmed by a leading expert.
The next appointment I have with her is in about 3 weeks time when I will stay overnight, have a full MRI and an intensive electromyographic test.. I think this is to predict a pattern, to help with research. When the results come through, to discuss if I might participate on the research program.
For my part I don't feel it will improve my life chances, but should help those with MND who come after me. I also feel comforted that there will be a dialogue between Prof Shaw and Halifax and my GP... which may well ensure that I get best treatment. But that is in no way to put Halifax and Dr Mahmood down. He has been splendid and spot on with the care and diagnosis... but it does make me feel better to be observed and helped by two neurologists.
I was going to end on a light note by including some of the pics I have done on the iPad... but the Cloud.. the method by which you share info between computer and iPad seems to be lost. Do I find the cloud? or shall I just leave it and love the sunshine like we had tonight!!!
I'm too tired to do more tonight, have the car assessment experience tomorrow.. so plenty to keep me going!!!.
The last few days have been brilliant energy wise.. but have been helped by friends contacting me today, thinking of me, wishing me well ( I guess it was a crunch day) .. and the lovely Rebecca who brought in a tray meal, simply fit for a Queen... Thankyou Rebecca, the meal was so delicious and so so welcome.
HUG ME, I'VE GOT MND
I went in straight away to meet Prof Pam Shaw. She is an expert in MND, specializing in ALS.. What a charming, professional woman. We spent over an hour together with her doing extra checks on my eyes , mouth and all the usual ones on my limbs. I seemed to be quite strong, except when it came to legs and my poor left foot just dangled.!.. no power to even get to a right angle to my leg. It looked so sad, dangling there.
After this assessment she said that with info she already had, and with her thorough examination, she was sorry but confident that the diagnosis of MND, ALS was correct.
You may think that this would be a blow. Strangely it wasn't , I expected it but it is, in a funny way, good to know that is confirmed by a leading expert.
The next appointment I have with her is in about 3 weeks time when I will stay overnight, have a full MRI and an intensive electromyographic test.. I think this is to predict a pattern, to help with research. When the results come through, to discuss if I might participate on the research program.
For my part I don't feel it will improve my life chances, but should help those with MND who come after me. I also feel comforted that there will be a dialogue between Prof Shaw and Halifax and my GP... which may well ensure that I get best treatment. But that is in no way to put Halifax and Dr Mahmood down. He has been splendid and spot on with the care and diagnosis... but it does make me feel better to be observed and helped by two neurologists.
I was going to end on a light note by including some of the pics I have done on the iPad... but the Cloud.. the method by which you share info between computer and iPad seems to be lost. Do I find the cloud? or shall I just leave it and love the sunshine like we had tonight!!!
I'm too tired to do more tonight, have the car assessment experience tomorrow.. so plenty to keep me going!!!.
The last few days have been brilliant energy wise.. but have been helped by friends contacting me today, thinking of me, wishing me well ( I guess it was a crunch day) .. and the lovely Rebecca who brought in a tray meal, simply fit for a Queen... Thankyou Rebecca, the meal was so delicious and so so welcome.
HUG ME, I'VE GOT MND
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