Equipping People To Make Sense Of What They Are Told
Angie Hampshire
MS Case Study - At the time I kept it a secret from most of my friends and family
until I could hide it no longer. Several years ago it changed to secondary progressive
MS. By Sept 2004 I could no longer stand or walk. Slowly but surely my treatment,
started in 2006, is turning things around for me.
My story is about the benefits as well as the nuisance of the problems that are caused
by heat.
Living alone I am looked after by one carer for breakfast, two carers to wash me
and get me up, one carer for my tea and two carers to put me to bed. I spend all
of my life either in my bed or in a wheelchair alone inside my house.
After three injections of a medication I paid for I was able to roll onto my side
in bed,, lean forward in the wheelchair, write better and reduce night time diazepam
by ½ tablet. Although heat increased my spasms, my medication and weekly physiotherapy
help them to lessen. After the 4th injection I could straighten and stretch my legs
in bed.
Gradual improvements lead to my being told that my voice is becoming stronger and
I have now been able to raise my legs from the hips whilst laying on the bed and
also raise them on and off the footplate's of the wheelchair, my writing and use
of the computer have become slightly better too.
My carers are very impressed as well. My own feelings are that I can hardly believe
the difference that the medication has made and live in hope that it continues this
way. I can only have physiotherapy once a week my PCT does not provide it and I have
to pay privately for the benefit.
Although I know that Proventus is working hard on my behalf, however I am concerned
about what happens to people like me when the money runs out!
Rehabilitation
Rehabilitation is a therapy designed to maximise ability that uses physiotherapy
and often also occupational therapy. It isn’t a holiday and requires hard work and
dedication. Having said that, I have experienced great humour and camaraderie. At
an early stage you will be involved in a goal planning meeting to set out what expectations
there will be. Items of equipment used are tailored to your needs. There are so many
I can only remember a few, for example, plinth, dumbells, treadmill and standing
frame.
I have been in rehab four times, firstly when I had relapsing remitting MS when my
legs were strengthened. Latterly, when I progressed to secondary progressive MS I
was taught how to propel a wheelchair. My last session involved a lot of trunk and
stomach strengthening and I was able to sit up at the sink and wash my top half.
Incidentally this would not of been possible without the treatment I now have. My
advice? Get as much rehab as you can by getting your GP to refer you a rehab unit.
I am working on my abilities at home both alone and with the aid of one off the unit’s
physio and a private physio. I’m hoping to go into rehab again for another working
holiday.
My friends and family had gathered together at my request to help me raise money
to pay for treatment (Aimspro). No other treatment had been offered to me and my
health professionals did not help.
As a sufferer, like so many others I have spoken to, I was forced to devote my time
to searching for help.
The charity (Proventus) to which I belong, advised me that they are not able to directly
raise funds for any individual that would be used to pay for drug treatment. However,
I asked them if they would help me by collating donations any donations that my family
and friends received.
The fund raising efforts by my friends and family were very successful for which
I was very grateful. Then it came to a shuddering stop.
Mr Bray Michael - The MS Society’s Lymington & District Branch wrote to my local
newspaper expressing concern about the story of myself, my friends and family and
our attempts to fund raise to help me. “The story was an article which I had submitted
to the newspaper”.
In his letter to the newspaper he accused Proventus of orchestrating our actions
when it did not. Mr Bray was completely wrong and his remarks were very detrimental
to me and caused me considerable stress. Mr Michael Bray of the Lymington & District
MS Society therapy centre does not know me or anything about me.
Mr Michael Bray made a nasty, spiteful remark that was wholly wrong, I asked Proventus
to be the recipient of any donations made to me. Why? Because of my MS I am unable
to do it myself.
Mr Bray should really get his facts correct and climb down of his self appointed
“high horse’. What his nasty bigoted action achieved was that my efforts to help
myself were compromised to the detriment of my health.
Now that I can no longer afford the only treatment I found that was really helping
me my situation has worsened no thanks to you Mr Michael Bray .
