Thursday, 28 June 2012
SHEFFIELD VISIT
I have already written a short note on Facebook re my visit to see Prof Shaw yesterday.
Sorry blog readers, today you are second!
Basically I did all the usual pulls,stretches,breathing into tubes,blood taking,weight!, and talked with the prof. She had all the results of the extensive tests from my stay in May. ..and it's sort of positive news.basically the muscle strength in my legs has deteriorated. But I know that, that's why I use the wheelchair more and more ,otherwize I would simply just fall. BUT there has been little weakening of the rest of my muscles, ie from the weakness already in my shoulders and arms. She also said that Riluzole seems to work best(prolongs life) ,when weakness is limited to one main area,in my case legs. She also said that I should think of having had MND, at least from May last year as that was when I started limping.
So I guess I am now over one year in!
She did say that I must not be deceived, there is no cure, and there will be inevitable further deterioration.
A salutary thought.
Having finished the tests for me I was able to give blood for DNA research, and complete another info sheet re family history of MND.... None.
I am in a lifestyle study having completed the activity study questionnaire.
There is so much being done by Prof Shaw and the doctors into researching MND...thus I have decided to have shared care between Sheffield and Halifax. In no way will I put dr Mahmoud down, Halifax, he is wonderful and it is he who suggested prof shaw... So there is no conflict.
The v difficult bit of the day, was waiting for transport, which didn't arrive till gone six. I got home at eight.... So have done little today! Can you blame me?
Tomorrow is a green day, the day I get my green car! Hope the paperwork is now complete! I'll believe it when I actually drive it! I was told I would get car in a week to ten days, that was mid May... You see why I'm sceptical
So
HUG ME,IVE GOT MND
Tuesday, 26 June 2012
OUTSIDE MYSELF
I had a home visit from my psychiatrist today. He completely understood why I can't see him at the medical centre until I get an appropriate wheel chair. (see para after this re wheelchair.) The design of the splendid new Centre in Todmorden is so daft, and inaccessible for people who have difficulty walking. There is a choice of ramp or steps... But the ramp is quite steep and long as it has to rise to quite a height. It therefore would take two people to push me up to the entrance. It is likely that I might be able to find two friends who would be willing to do this.... However, why should I? It's simply not right that I inconvenience people in this way.
..... Anyway, I have been feeling as though I am looking down on myself and watching all that is happening to me. It such a strange disorientating feeling, and makes me feel so unreal. I'm watching a video of myself.. and yet I'm here.... As I thought , and he confirmed, this feeling happens when people are in extreme stress , it's a coping mechanism. It doesn't make it right, or make it better, but it's good to have an explanation for this horrid, weird feeling.
He suggested that I might need some respite, and I agree. The few days I had in hospital were such a break. I felt safe, and anxieties dropped away for a while. food came without the battle in the kitchen , I could shower safely, support was there... I could easily have become institutionalized!
Anyway I have decided to talk to a GP re a referral to Overgate Hospice. Even if I just spend the odd day there,I will have a meal, enjoy company and be able to have a safe bath... it is so long since I was immersed in water. I wouldn't wish this every day, but it would be such a treat every so often.
The other advantage of the Hospice, is that I think that is where I wish to die.. I need to be secure in wherever the place is. From what I have heard people are so caring, and the atmosphere is positive, even though all people are terminally ill. The other major factor is, that, I understand that families are supported as a whole. It is important to me that my girls and their husbands are supported when I die. This could be the right place for me to spend my last days.
.....................................Wheelchair ,update... (adding to stress). Next Friday will be 6 weeks from when I was given the training for the outdoor/indoor wheelchair. I was told I would get it in 4 to 6 weeks. I thought I would ring today to see what was what. What I did find was that it actually wasn't ordered till 2 1/2 weeks after the assessment! This is to do with budgets!!! So now I have extra time to wait..... more stress..
........................................And yet more stress.. the money being released from the sale of my house, which I will have upfront to get the adaptations done on the bungalow... well the relevant people (from sheffield, don't ask!!!) sent a form to fill in... no problem. BUT I have to send in my house insurance. This is fine , but they expect it to be for 200K, the sale price, yet a rebuild price is only about 150K, so now I have to adjust insurance.... another stress... I need a secretary!!!!!
Tomorrow I go to Sheffield to see Prof Shaw, to get the results of the tests .
Watch this space..
but maybe no news tomorrow as the trip to Sheffield is exhausting, so I doubt that I will Blog tomorrow night.
HUG ME, I'VE GOT MND
..... Anyway, I have been feeling as though I am looking down on myself and watching all that is happening to me. It such a strange disorientating feeling, and makes me feel so unreal. I'm watching a video of myself.. and yet I'm here.... As I thought , and he confirmed, this feeling happens when people are in extreme stress , it's a coping mechanism. It doesn't make it right, or make it better, but it's good to have an explanation for this horrid, weird feeling.
He suggested that I might need some respite, and I agree. The few days I had in hospital were such a break. I felt safe, and anxieties dropped away for a while. food came without the battle in the kitchen , I could shower safely, support was there... I could easily have become institutionalized!
Anyway I have decided to talk to a GP re a referral to Overgate Hospice. Even if I just spend the odd day there,I will have a meal, enjoy company and be able to have a safe bath... it is so long since I was immersed in water. I wouldn't wish this every day, but it would be such a treat every so often.
The other advantage of the Hospice, is that I think that is where I wish to die.. I need to be secure in wherever the place is. From what I have heard people are so caring, and the atmosphere is positive, even though all people are terminally ill. The other major factor is, that, I understand that families are supported as a whole. It is important to me that my girls and their husbands are supported when I die. This could be the right place for me to spend my last days.
.....................................Wheelchair ,update... (adding to stress). Next Friday will be 6 weeks from when I was given the training for the outdoor/indoor wheelchair. I was told I would get it in 4 to 6 weeks. I thought I would ring today to see what was what. What I did find was that it actually wasn't ordered till 2 1/2 weeks after the assessment! This is to do with budgets!!! So now I have extra time to wait..... more stress..
........................................And yet more stress.. the money being released from the sale of my house, which I will have upfront to get the adaptations done on the bungalow... well the relevant people (from sheffield, don't ask!!!) sent a form to fill in... no problem. BUT I have to send in my house insurance. This is fine , but they expect it to be for 200K, the sale price, yet a rebuild price is only about 150K, so now I have to adjust insurance.... another stress... I need a secretary!!!!!
Tomorrow I go to Sheffield to see Prof Shaw, to get the results of the tests .
Watch this space..
but maybe no news tomorrow as the trip to Sheffield is exhausting, so I doubt that I will Blog tomorrow night.
HUG ME, I'VE GOT MND
Monday, 25 June 2012
WAITING
Life seems to be, at the moment, a series of waiting for things.. This is so, so hard. I feel as though I have such a short ,probably, time, that I simply don't want to wait for anything.
I know people can't produce things out of a hat, but times should be accurate, Then I could cope.
The time on the bungalow is now down to 7 weeks... but watch this space!
The time for the indoor/outdoor wheel chair is now 5 weeks from ordering ,,, so it should be here soon, a time of 4 to 6 weeks was given at order.
The wait for the car... WELL.. I was told originally I would have it in 7-10 days. That was so long ago, I can't even remember when it was... But then I was told to come last Monday. It was at Elland, and I saw it, sat in it, took pictures of it.... but couldn't have it! ............... I was told to come back in a few days.. I said , Ok , I'll come back in a week... to make sure that all would be well. ...........I first had a worry, when having tried to contact the supplier to pay, there was no response. I finally got in touch with them this morning, before my friend Ann arrived to take me to collect it... Apparently the paperwork hadn't been completed as the Motability Road show was on... ?!!! So a new date was given of Wednesday,,, but I'm in Sheffield hospital that day. So, finally, Ann can take me on Friday so that is when I should collect the Green Machine.
We'll see.
All these waits are just about Ok, I can cope if people keep to their promises... but they don't.
I guess I shouldn't feel I should have special treatment... BUT my life is passing.... This is so sad... I'm so demotivated,,, haven't dressed again today... just had TV on and played scrabble with strangers.
The psychiatrist is visiting me tomorrow, I will have a lot to unburden myself of...
and this Blog, too is a way of doing this... so thankyou for reading it.
HUG ME , I'VE GOT MND
I know people can't produce things out of a hat, but times should be accurate, Then I could cope.
The time on the bungalow is now down to 7 weeks... but watch this space!
The time for the indoor/outdoor wheel chair is now 5 weeks from ordering ,,, so it should be here soon, a time of 4 to 6 weeks was given at order.
The wait for the car... WELL.. I was told originally I would have it in 7-10 days. That was so long ago, I can't even remember when it was... But then I was told to come last Monday. It was at Elland, and I saw it, sat in it, took pictures of it.... but couldn't have it! ............... I was told to come back in a few days.. I said , Ok , I'll come back in a week... to make sure that all would be well. ...........I first had a worry, when having tried to contact the supplier to pay, there was no response. I finally got in touch with them this morning, before my friend Ann arrived to take me to collect it... Apparently the paperwork hadn't been completed as the Motability Road show was on... ?!!! So a new date was given of Wednesday,,, but I'm in Sheffield hospital that day. So, finally, Ann can take me on Friday so that is when I should collect the Green Machine.
We'll see.
All these waits are just about Ok, I can cope if people keep to their promises... but they don't.
I guess I shouldn't feel I should have special treatment... BUT my life is passing.... This is so sad... I'm so demotivated,,, haven't dressed again today... just had TV on and played scrabble with strangers.
The psychiatrist is visiting me tomorrow, I will have a lot to unburden myself of...
and this Blog, too is a way of doing this... so thankyou for reading it.
HUG ME , I'VE GOT MND
Saturday, 23 June 2012
BLOGGING
Sorry if that should be one G... never was a confident speller!
I know I haven't Blogged for a few days.. It's really strange that the last few days, though eventful in some ways, have been relaxing days... It seems the more you have to do, the more you do. But as you must understand, I must rest as much as possible. I think I slept 11 hours a night for the last few nights... well with the excception of last night.
What a night thast was .. wind.. rain.. floods! So, so noisy.. I don't think I slept till it started to get light, then woke every hour... not good... today I ache all over. BUT I am so thankful that my home wasn't flooded , as so many were in Tod.
I was at the Todmorden Hippodrome watching a perfomance of Two, when the flood warning siren went off. The audience were evaccuated and members arrived in force to start to try to control the flood in the building. Such a shame, the building was hit by floods before and the excess on the insurance policy is now very high.
I wish I had become more involved in this lovely little theatre whilst I was well enough to be very active.. I had always meant to, but didn't get round to it until the last few years... now I cna't get on the stage ( because of steps) even if there was a part for a woman with a zimmer!!
So I guesss the moral here, my friends, is don't put things off..... it might be too late.
My days seem so full at the moment, even though I have little more imput to do with accesss for bungalow... think this is mostly sorted now... just the work to be done!
My big decision is which sofa do I buy.. The one I want is from Sofa Direct.. a lovely Pink velour... but it's expensive.. the sale ends on Sunday... Ikea do a pink sofa but can't get swatch to compare fabric.. do I order today and just take a chance... don't know. keep thinking, the sofa workshop one is soooo lovely, but will I need the extra £500 more in the future? Who can tell. I feel so guilty about spending it when it might go towards something sensible .. like a commode!!!!!! Oh god what a thought. I thought maybe writing about the choice would clarify my mind.. but it hasn't... watch this space.
Last Thursday janice came to do more sketches of me, she is painting my portrait... so as I had make-up on I thought i might try to take some pics of myself....
HUG ME, I'VE GOT MND.
I know I haven't Blogged for a few days.. It's really strange that the last few days, though eventful in some ways, have been relaxing days... It seems the more you have to do, the more you do. But as you must understand, I must rest as much as possible. I think I slept 11 hours a night for the last few nights... well with the excception of last night.
What a night thast was .. wind.. rain.. floods! So, so noisy.. I don't think I slept till it started to get light, then woke every hour... not good... today I ache all over. BUT I am so thankful that my home wasn't flooded , as so many were in Tod.
I was at the Todmorden Hippodrome watching a perfomance of Two, when the flood warning siren went off. The audience were evaccuated and members arrived in force to start to try to control the flood in the building. Such a shame, the building was hit by floods before and the excess on the insurance policy is now very high.
I wish I had become more involved in this lovely little theatre whilst I was well enough to be very active.. I had always meant to, but didn't get round to it until the last few years... now I cna't get on the stage ( because of steps) even if there was a part for a woman with a zimmer!!
So I guesss the moral here, my friends, is don't put things off..... it might be too late.
My days seem so full at the moment, even though I have little more imput to do with accesss for bungalow... think this is mostly sorted now... just the work to be done!
My big decision is which sofa do I buy.. The one I want is from Sofa Direct.. a lovely Pink velour... but it's expensive.. the sale ends on Sunday... Ikea do a pink sofa but can't get swatch to compare fabric.. do I order today and just take a chance... don't know. keep thinking, the sofa workshop one is soooo lovely, but will I need the extra £500 more in the future? Who can tell. I feel so guilty about spending it when it might go towards something sensible .. like a commode!!!!!! Oh god what a thought. I thought maybe writing about the choice would clarify my mind.. but it hasn't... watch this space.
Last Thursday janice came to do more sketches of me, she is painting my portrait... so as I had make-up on I thought i might try to take some pics of myself....
HUG ME, I'VE GOT MND.
Wednesday, 20 June 2012
WEDNESDAY
Actually another rather normal day. The facial libations in my arms and hands have diminished somewhat.... Perhaps causes them to be more obvious... Don't know. But the less there are the better as far as I'm concerned as its a sign that the muscles are working less well.
In a weeks time I go back to see Prof Shaw at Sheffield so will be able to talk this through.
A lot of good ,happy,normal things happening in the next few days.... Tomorrow Janice comes to do more sketches, she is a great artist and we'll have a good chat too!on Friday I'm going to the Todmorden hippodrome to see Two... Helen will take me and push me round.(hope I don't need the loo as last time we were there together she had to pull me off the seat.. Simply too low... Oh ! The ignomany ! On Saturday the Coven ,group of four friends, Liz,Maria, Elsa Nd myself "are meeting for lunch then on to The Handmade Parade in Hebden. Liz is pushing me round.
So a pretty good life really.
I'm happy, which can't be bad.
But please , don't ever forget, because all days are not like this.......
HUG ME ,I'VE GOT MND
In a weeks time I go back to see Prof Shaw at Sheffield so will be able to talk this through.
A lot of good ,happy,normal things happening in the next few days.... Tomorrow Janice comes to do more sketches, she is a great artist and we'll have a good chat too!on Friday I'm going to the Todmorden hippodrome to see Two... Helen will take me and push me round.(hope I don't need the loo as last time we were there together she had to pull me off the seat.. Simply too low... Oh ! The ignomany ! On Saturday the Coven ,group of four friends, Liz,Maria, Elsa Nd myself "are meeting for lunch then on to The Handmade Parade in Hebden. Liz is pushing me round.
So a pretty good life really.
I'm happy, which can't be bad.
But please , don't ever forget, because all days are not like this.......
HUG ME ,I'VE GOT MND
Tuesday, 19 June 2012
WOW..... A "NORMAL" DAY
Yes a normal day.... I wrote a lovely paragraph about how normal a day I have had. How lovely it was to manage ironing, have my nails done, and have a visitor,,,, Nigel my ex deputy from Siddal...
How super it was to be in control and just simply, happy, no complications today.
THEN I viewed my Blog... there were weird blocks of white.. so I tried to clear them... and in so doing I deleted the lot...
So, as I say, a normal day!!! Everything good except my grasp of technology!!!! No change there!!!
.
HUG ME, I'VE GOT MND
How super it was to be in control and just simply, happy, no complications today.
THEN I viewed my Blog... there were weird blocks of white.. so I tried to clear them... and in so doing I deleted the lot...
So, as I say, a normal day!!! Everything good except my grasp of technology!!!! No change there!!!
.
HUG ME, I'VE GOT MND
Monday, 18 June 2012
AND , YES, IT'S GREEN!
This morning I had a lovely shower... have had problems with drying myself... swinging the towel over your shoulder to dry can be very destabilizing... and I'm inclined to fall.... so I decided on a new tack... use a towelling robe. YEY!!!! It worked well. So no new towels, just a few more robes to replace.
Anne P arrived just after 11 and we set off for BrookesMiller...
David had a number of calls to make, we had a coffee. sad news the cogs of Motability sometimes go slow, I can't have my WAV car for another week..... so sad,
AND THEN I did get to see it... and boy is it GREEN... very very GREEN
Rested for most of the afternoon. Then a visit from Richard... looks like 8 weeks till the move... Ho Hum...
Well with the car at least I will have modicome of freedom. ....
Keep Smiling!
HUG ME, I'VE GOT MND
Anne P arrived just after 11 and we set off for BrookesMiller...
David had a number of calls to make, we had a coffee. sad news the cogs of Motability sometimes go slow, I can't have my WAV car for another week..... so sad,
AND THEN I did get to see it... and boy is it GREEN... very very GREEN
Rested for most of the afternoon. Then a visit from Richard... looks like 8 weeks till the move... Ho Hum...
Well with the car at least I will have modicome of freedom. ....
Keep Smiling!
HUG ME, I'VE GOT MND
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