Friday, January 30, 2009

A great visit and old mate!

An old friend has just left after a few days stay. It was a great boost to have him around. He has been Herrad's friend for over twenty years and I hit it off with him when she introduced us. Still a dirty rock'n'rolling biker and still one of the best.
When Herrad was a cook in a vegetarian cafe he and his then girlfriend came in. Two very young very cute Ausie punkrockers. They read the menu enthusiastically-worked out what they could afford and ordered a Greek salad between them. Herrad gave them some bullshit that she had made up plates for customers who had not shown so it would be doing her a favour if they ate a salad, a main course, extra bread, a sweet course and drank a glass or two of red wine.
Martin ended up working alongside her and they are mates for life. A typical incident of Herrad's instinct to be kind to a stranger paying off.
For a shy man like me she has been a great asset- I have to be friendly with a partner like Herrad and have enjoyed life much more as a result.

Wednesday, January 28, 2009

Getting better!

I may have been over optimistic last time but real good news today from the rehabilitation doctor and nurse. The wound has healed a full centimetre since last week! Now the doctor is back her input should help us get the wheelchair Herrad needs if she is to get her mobility back. She is talking about being stuck in bed permanently- that is such crap for her. I know just how much she loves interacting with everyone she meets on the street. She has a smile and a word for everyone. Most people are charmed by her. The world needs Herrad!

Tuesday, January 27, 2009

Over optimism

I said in a pevious post that Herrad sitting up may be happening at the end of Feb. I got this wrong. We may be able to get a prognosis on sitting up at the end of Feb. I just want it to be so. Not sharing a bed was a big enough blow but not going out together is real shit.
I want to take Herrad out to see a band in the Paradiso. We have had wonderful nights there with music from Willie Nelson to punk rock- mind you Willie is a country singer with a drop of punk rock in his blood- a great place with lovely memories for us. Herrad was disapointed because they have adapted the old place for acsess- previously disabled visitors were carried in by a couple of burly doormen- she was looking forward to that! Maybe a rocking summer night and a roll through the park home. A dream to keep us warm on a miserable January night.

Thanks to Herrad's friends

Herrad sent an email and blogged about how she is feeling now. She has had to let go of the "I'm OK" answer when you ask her "How are You?'
This is a relief for me. I have to ask her how she is all the time. Cold, warm, hungry thirsty cant scroll down the computer screen cos her hands are shit, sitting to the left thus straining the right side of her neck. I need to know 'cos it is my job to to sort it out. Unfourtunately my necessary question was getting the answer she was not givving to the casual "How are you?" from friends.
"How do you fucking think I am? I have got bloody MS and hurt all bloody over you arsehole how do I feel? I feel like shit!"
I am a stroppy git myself and had to take a deep breath and be all sweet and bring her round to discussing what I can do to help. Sometimes I would react. She would get upset and we then talked hugged and got going on the right track again. Life is easier now it is public: Herrad feels really shitty- now we can get on with the rest of life.
Herrad's friends have been great. The kind supportive comments from her fellow MS bloggers and her other friends around the world have been a huge lift for us.
We are pushing forward with some new ideas and Herrad is working on making podcasts again.
Your comments and emails have helped us get rolling again. Thanks.

Wednesday, January 21, 2009

Sorry RCA

Just before the nurse arived we discovered we had miss read the calenda and they were bang on time- we were early! I should have known 'cos Ton Peeks the specialist nurse who visits is a 100% profesional and would never leave a patient waiting without word.
Any way it went good! Getting better by the day. Talk of sitting up by the end of Feruary...Rejoice

Hasty post

I am waiting for a group of men to come to my house so I can show them my wifes bottom. What a strange world I live in now! (Doctors and nurses form the rehablitaion centre are checking the progress of the pressure wound. It is good I think and am getting impatient to have this confirmed and havving the rest of the day returned to me but they are half an hour late. It is quite stressful for Herrad -mostly in anticipation than in execution so this delay adds a disproportionate amopunt of stress to the whole procedure. She will be sore and grumpy all afternoon. I have a strategy to make it a bit a better- I have made potato scones (a Scottish delicasy that is, of course, fried). Must be watching Mat McGinn videos on youtube- not pc and sometimes his attitudes seem very dated but a hell of a talent.

Wednesday, January 14, 2009

Happy New Year -love to Steve and BR

It has beeen a nice couple of weeks. I have had a cold for ages but it held off till the last few days to become a stinker so we have had a good couple of weeks. We had a lovely time for ourselves and a few nice visitors.
The January freeze ended yesterday and now we have a lovely mild sunny spring like day.
My misrable Xmass greeting is now superceded by a determindly optimistic happy new year to the whole world.

Steve asked about seizures in his comment- Herrad has not suffered anything we have not been able to help with marijhauna. The only other neuro drug she uses is Baclofen and we seem to have kept the worst symptoms under control. She can have spasms when stressed (being moved clumsily or sudden tempature changes) but never as severe as BR seems to be hit by. MS is very personal and no two people exhibit all the same symptoms so I can not say that the weed would help everyone but I do believe it helps so much with Herrad that I doubt if she would have much quality of life without it.
I repeat that the neurologist at the OLVG (Hospital) recomended it as the best drug to use as did Proffesor Polman at the VU (free universtiy hospital).
This is no help to those who live in prohibition areas. It is ironic that law abiding Americans are banned from recieving the best availble treatment.
This carer situation is crap. I feel for anyone forced into decieding for others. Herrad and I have the correct things in place and I know her wants but at some point I will have to help put them into action. Nothing in previouis experience has prepared me for this.
I can only think of plattitudes to say: I aint got no wisdom to share.