General Chat

Its also a two way street, he enables me to do what I want.

You have the right idea, dont take away any independance they have. Too many people say, 'Dont do that, I'll do it'' instead of letting you try.

my hubby was diagnosed with Ankylosing Spondylitis at 26 and was told then he would be in a wheelchair by the time he is 40. He is on a lot of medication for pain control because unfortunately for him he has the sero-negative type and has not been in remission for 20years. He is only 49 now.

He has used his crutches for the past 10 years and his wheelchair is only used for long distances. This has not mean his life has ended. He went to China 2 years ago and was in his wheelchair on the Great Wall, went around the Forbidden City, Summer Palace, went to the Terracotta Warriors. When we were in China another English couple came up to us and said that we were very brave. My husband felt insulted by the way it was said and found the comments made very condescending. He asked would they prefer that he sat at home watching the world go by.

He goes to Thai Chi, okay he does the exercises sitting down and Frank his instructor works around his disability. He spends his days depending on whether or not it is good day or bad day. Good day, walks the dog. Dog walks without leash at his side or runs after a stick which hubby throws. He doesn't drive as often as he would like, only on very good day but this does not stop him from going out. He just pops onto the bus or gets a taxi. He still has his independence. Oh and he makes fantastic omelets. On bad days he is crippled with pain and mainly stays in. But he say if he didn't have the bad days he wouldn't appreciate the good days as much as he does.

What I am trying to say is that being in a wheelchair does not mean the end of your life, it just means a different way of living your life. You have extra challenges but these can be overcome with a bit of ingenuity. Try to be positive. I know it easy for me to say as it is not me, but I am his carer and I see my role as enabling him to do things for himself.

I am due in to hopital this Saturday 28th August nothing can be done with my spine other than injections of which i have had many plus a nerve block as i have scoliosis and Ostoproisis just to let you all know how things are going as long as i am pain free will mean a lot to me as the Consultant said to me i woulddnt thank him if it all went wrong
Margaret xx

Hiya Carla and Margaret and everyone else suffering with the back probs.
I too am in the exactly same boat so my heart goes out to all of you..
I wish you all well and just,well,that I'll be thinking of you all.
Love and hugs
Tricia xxxx

Hello
I forgot my thread (thanks Margaret have pm'd you)

Well went to the appointment & no op is available for my spine it's too far gone.He was a bit more optimistic on the "walk or wheels" front,basically the pain will just get worse & worse until I can't stand,this isn't being helped as one of my tablets appear to have damaged my kidneys so I can't have them anymore & I need them (walking with crutches has never been a skill I've mastered v.well).
I would have liked a bit more good news & less doom
Thanks everyone because I went in determined to accept anything to try & make my back better-it meant a lot.

I will have everything crossed for you on the 4th Margaret-one of us has to get lucky,let it be you.

Hi everyone
Well a lot has happened since i wrote about my back i was told after i had my last lot of injections i cant have any more for the time being , i am going to see a surgon on the 4TH AUGUST 6 weeks wait is nearly gone , but it wont be in London be at my local hospital, i have been in terible pain in this last 6 weeks my whole body has changed shape i now use a wheelchair i just cant walk far i am so depprsed over it all i just hope and pray he can do something for me i will go with thoughts in my mind that it has gone to far and nothing can be done other than a jacket to keep my body straight i was even asked by my other consultant i looked very tired and deppressed and would i like to talk to someone about my problem.
It is our 40th wedding anniversary on the 1st August i should be happy about it all but how can i feel happy with all this going on with my back,when i married all those years ago did i ever forsee what was going to happen ,take care everyone i will keep you posted
Margaret xx

Thank you.....
Needs a bit more than luck,a small miracle would come in handy!

It's been very interesting reading everyones comments & I feel a lot more decisive if the opportunity for an op is still available. (I think I'll scream if he say's it's too late)

I think if you really need an op, and the surgeon suggests it then go for it

Good luck x

Dizzi-I'd faint urgh :(

BEEN READING THIS WITH INTEREST
BECAUSE I KNEW ABOUT
CARLA'S DELEMA
ALSO I WAS ASKED A FEW YEARS AGO ABOUT A BRAIN OP
FOR PD WHEN LAST RESORT,PROBLEM IS THE ONE I WOULD
AGREE TO IS BANNED IN UK
BUT SO SUCESSFULL IN OTHER COUNTRIES ,THEY DO
STEM CELLS AND ARE SO SUCESSFULL THEY PRODUCE MORE BRAN CELLS THAN NEEDED
THIS COUNTRIE ONLY ALLLOWES ELECTROS IN THE BRAIN
YOUR AWAKE DURING OPERATION AND WIRES GO THROUGH YOUR BODY TO BRAIN..........JUST DONT KNOW IF I COULD TAKE IT

Margaret, you're a year younger than I am and, if I were in your position, which I'm not, bless your heart, I would certainly go for it. We've reached an age that once we thought was old and 'past it', but it's not true! Grab life by the horns and take every opportunity that you can - you probably don't have the energy, but please try. I shall be rooting for you! Keep posting :-)

Hi Carla
Face your life and its trials
With a quiet mind and courageous smile
And know that courage is what we need
To perform for us all heroic deeds
So with cheer and tons of hope
Go forward and never mope
And burn the little candle's light
To make your surroundings all so bright
And all this can be done with faith
And the gift of courage and love, from me your strength
So come forward and face life's trial
With a quiet mind and courageous smile.

You should know I will be with you, holding your hand, in every step you decide to take. xxx xxx xxx xxx




I'll go now as i am the only Man that has posted on here.

I'm absolutly pettried of ops so if he says the risks too high I will go with that will pm yu Carla x

Hi Margaret,we're in similar boats-I can't have the injections,there's nowhere to inject in to,it's collapsed.
They were convinced I'd have osteoporosis as well &were a bit miffed when I hadnt,I was rather delighted,my spinal column causes eneough problems & pain on its own.
I'm sick & tired of MRI's,just want this sorted so I can get my life back,having been told not to carry anything heavier than a bag of sugar,it sounds like our lives are equally exciting? :(
I would be very interested to know who you're referred to in London & how you get on if you'd be kind eneough to let me know(feel free to pm me?).

Footie,I'm with Kitty on this,he sounds one very confused Consultant,could you try for a second opinion? x

Footie.......you need to change consultants!!

If he says the risk of you having the operation is too high then advises you to have it to improve your quality of life, I would be worried about his competence to be honest.

Hi Kitty I wish it were that simple ~ the consultant says that the risks ar too high ... he also says I will have a better quality of life if I take the risk ~ at the mo my choice is made but who can predict the future

So pleased i found this thread , it made good reading and i am soon to be in the postion of shall i or not , snap mine is the lumber region i am on loads of tablets , i have had countless xrays MRI,s bone scans 4 lots of injection in my facet joints 2 lots of nerve endings burnt off and this weekend just gone by trigger point injections in a muscel at the side of my spine ouch did that hurt it caught the scatic nerve which i have had for 5 years now oh plus facet injections in left side the side i have a very bad curvature of the spine , also have Ostoprosis in my spine ,
Now after nearly 5 years of all this going on my consultant has asked me if i would like to go to London to see a top surgeon to see if anything can be done, my consultant has told me that at 61 i am too young not to have anything done i have a postive attitude about things and at this stage in my life i dont want to end up in a wheel chair ,which carry on as i am and i will i dont want to keep having injection and all the other things i have had done so YES i will be going to London i dont have the appointment yet but if i dont go i will be asking myself what if i had gone what would have happened if i dont go i will be asking myself for the rest of my life i wish i had gone if nothing can be done and i am a little doughtfull because of the Ostoprosis then end of story i continue as i am i am on anti depresants i do get high blood presure when i am in pain it comes down when the pain eases .
I am a person who loves my garden decorating housework all sorts of things , but all of thiose things have to be done by my husband and i hate it plus he works as well he is about my age so much for our happy retirement days , i also hate having to depend on DLA i know its there to help us out but i wanted so much to do these things myself , so after me waffling on if i have the chance i will take it if i end up in a wheel chair i was the one that took the risk.
My days are spent making cards doing my family history the odd bit of washing up feed the dog what an exciting way to spend the day
I will be following this thread ,
Take everyone
Margaret from Kent.

if you dont take risks in this life........ you have never lived...GO FOR IT...

Thank you all
If the option is there-I have to go for it.
My GP knows less than me! & it will be "procedures"........like a mining expedition,drilling & propping with scaffolding.(titanium rods)

It's still a wait & see but I do appreciate the confidence boosts & reassurances.

Sue,don't cross everything at the same time-I did once & fell over lol x