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personal - multiple sclerosis - rose
My sister Rose was born in 1969. She is a beautiful, outspoken, bolshy, strong-willed married woman with two kids. She has the rudest sense of humour of anyone I know, finding a double entendre from the most innocuous of situations. And in 2000 she was diagnosed with multiple sclerosis.
If we look back on it now, all the signs were there years before. She first went to the doctors in 1990 because her face and hands were numb. However it was not until Christmas 2000 that she was told that she definitely had MS. The initial diagnosis was met with incredulity.
"I don't drink, I don't smoke and I don't do drugs. What's wrong with me?"
She was prescribed vitamin B12 by her doctor and felt alright for a while. Then the symptoms came back! She paid £600.00 for an MRI scan and a lumber puncture and MS was confirmed. My sister was just totally shocked!
Within a four year period my sister went from relative 'normality' to 'physical disability' experiencing many of the symptom that MS sufferers know oh so well. She had to give her her nursing career and gradually found herself unable to walk. Despite being confined to a wheelchair and having relapses which result in stays in hospital, she still maintains her sense of humour. She has good days and bad.
She has fallen more times than anyone cares to remember. Her two children have been a tower of support, with maturity that belies their tender years. They know how to look after 'mummy'.
Having seen a rapid deterioration in her health her family - championed by her husband Carl - have actively supported her in her decision to try stem cell treatment, which could help with her shaking and her paralysis.
Her religion (Roman Catholic) - not to mention the law - restricts the type of stem cell treatment she can opt for. In addition, the only treatment currently available to her is available miles away in another country...at PCM Rotterdam, Holland. There is a very long waiting list for both the initial appointment with the doctors and for the treatment. If she is considered to be a suitable candidate then realistically it will be some time in 2007 before treatment can begin.
Nevertheless she has ploughed forward with this, despite the reservations of her medical practitioners. A fund raiser was held on the 10th March 2006 and so far over £8500.00 of the required £13,500.00 has been raised, with the remainder promised by members of the local community.
It is hoped that this treatment will stem her decline and allow her to live the life she deserves...free from pain and with as much dignity as is possible.
THE CONTINUING STORY
17th August 2011
The death of Rose's husband has had a major impact on Rose. He was the main care giver. That role has not been taken
up by myself with support from his children and her / our parents. I am finding that sorting out the affairs of someone who is
unable to communicate as well as she might like, is challenging.
Rose is continuing to have cramps in her arms and legs. The medication given as a muscle relaxant at varying times of the day seems to have helped greatly, but she still has muscle spasms and intermittent pain. On a good note, the peg feeding has helped to increase her body size. She no longer looks half starved. Actually her increased weight makes moving her a little harder than before but we'll live with that, if it means being healthy.
29th September 2010
Stem Cell Doctor banned from work.
A doctor who offered unlicensed stem cell treatments to
patients with MS has been struck off by the General Medical Council.
Dr Robert Trossel treated several men and women, who paid around £10,000.
The GMC found that the doctor, who trained in the Netherlands, had breached
good medical practice by "exploiting vulnerable patients".
Full story on BBC website
18th September 2010
Speech continues to deteriorate.
Rose had an operation to have a PEG fitted so that she could be fed liquids directly into her stomach. She
desperately needed this as she was not able to take in enough liquid without choking. It seems to be helping,
although she is having to get use to having a stomach full of liquid. Additionally, the carers need to have training
in the use of the PEG system so a lot of this is falling on her husband in the evening and mum during the day. Mum
is exhausted travelling up to provide the liquid every day, but part of her feels happy that at least Rose can get
some decent medication and liquid directly into her body. Rose is taking all this stoically as always. Luckily she
can still take food normally. in small bites, so she can still enjoy tasting food.
29th December 2009
Speech continues to deteriorate.
We spent Christmas at Rose's home. it was quite a good day all things considered. She seemed to be in good spirits,
but perhaps a little bit sleepy. One of the continuing problems is her deteriorating speech. It is difficult to understand what
she is telling us, which I know is frustrating for her as much for those trying to interpret her words. Carl and the Kids and mum
especially are very patient with her. I think in many ways, this is worse than the physical disabilities. Rose is and always
has been such a vocal person. We believe this is as a direct
result of the muscle relaxants. We will need to speak to the doctor to see if anything else can be prescribed. Perhaps there
is medication that will target the limbs and not affect her ability to talk.
8th July 2009
A party was held recently to celebrate Rose's birthday. It was held at the local pub and loads of people attended.
Celebration pictures are located here
16th June 2009
Rose has been prescribed muscle relaxants to try and help with the spasms and stiffening and contortion of limbs. These seem
to have had an impact on her speech. It is very hard to understand what she is saying now.
28th May 2009
Rose has not improved at all. Her condition has worsened slightly. She suffers from severe craps which requires
someone to constantly bend her legs. Straightening her legs is incredibly difficult. Its as if the tendons have shortened. The just bend
automatically now involuntarily.
She suffers from bouts of crying for no reason. I always have to check whether she is in pain.. it's hard to ignore someone crying. However she reassures us that she is alright whilst still crying. I understand that with some MS sufferers, this type of visual emotional low is part of the disease. It's upsetting for everyone concerned, including Rose who becomes extremely annoyed when we ask her is she is in pain. She tells us she is alright but still cries and gets annoyed when we ask her again
Her appetite is hit and miss. Some days she'll eat considerably more than others. On the whole though she tends to just pick at food. She is still losing weight and her legs are extremely thin. Her speech varies from day to day. Some days she is incomprehensible to me, although her son seems to be able to work out what she means. On other days she can make herself understood very well.
She has a good support network at least. This includes family and neighbours, not to mention carers. They all come to her though. She refuses to be moved so is house bound. She has retained her sense of humour and she notices everything.
Her husband read about a new treatment which involved injecting body fat into sufferers. I've no idea if this is a viable treatment. However a drowning man will hang onto even the smallest branch.
20th August 2008
Rose was taken to hospital yesterday. She just wasn't right, mum said. Mum spent the day with her and said that she was more
lethargic than normal, sleeping virtually the whole time mum was with her. Carl arrived from work and was worried enough to call an ambulance.
They stayed in hospital over night and returned this morning. It seems that she has an infection of some sort... we don't have anything more specific
than that alas. She's been given antibiotics and Carl will contact the MS nurse to see if Rose can have a steroid injection or something.
One interesting observation made my mum was the clear demarcation of the people assisting Rose. The ambulance men were not allowed to use the hoist. The carers did not do domestic work. The cleaner could not do personal care. Quite funny really. All cogs in a wheel. One goes missing...nothing happens.
26th February 2009
Rose is getting painfully thin. Basically she picks at food. On very few days do we see her eat a significant amount. She is still only able to move
a little. There are good and bad days for her speech. Some days I can understand her clearly. Other days I have to ask her to repeat what she said
four or five times to begin to piece together what she is asking or telling me. He limbs, particularly her legs, seem to have a mind of their own. She often
needs them to be bent when she is experiencing pain. When they are straightened, then bend back to the side. It's the muscles contracting I think. We
try to give her leg exercises by moving her leg up, with her knee moving to her chin. However her legs are so stiff at times. The only time we see a marked
relaxation of her legs is after she has had a shower and they are warmed up.
She is still getting great support from mum and dad and from social services who provide daily care, twice a day and cleaning support. And despite all this, and the most recent pain she seems to be experiencing, she retains her sense of humour. She still tried to crack her jokes - mainly one liners now - and although we struggle to hear and understand them the first time, sometimes, she perseveres until she has us chuckling. What more can I say. That's my kid sister for you!
31st July 2008
I am conscious of the fact that I have not provided an update of the situation regarding my sister. So I thought I would take the opportunity
to do so now. Rose's condition is dire! Her multiple-sclerosis was progressive and has resulted in her being bed bound. She has small movement
of her head and minor movement of her arms. However she is unable to move any other part of her body. She is to all intents and purposes, a
As far as her speech is concerned, she has good days and bad days. On the good days she can make herself understood pretty well in face to face conversations although telephone conversations are virtually impossible. On a bad day, conversation is a tortuous process. She suffers from days of depression and sleeps at least 18 hours of each day. She resists being brought out of bed to socialise... As for her appetite...this is patchy at best. She eats like a sparrow much to the concern of carers, and parents. But she can have days - very occasionally - when she will have good meals. I personally don't know how she survives on just a few bites of food, morning, evening and afternoon!
She receives full time care now and major support from Carl and the kids. The kids have got used to 'mum being in bed all the time.' We are still hoping for some 'miracle cure' but are dealing with the realities of her condition. There's nothing else to say at this point. All very depressing really.
1st February 2007
So much organisation! We got the
consent form and accommodation details.
I arranged the Ryan Air flight to Eindhoven, the accommodation in Eindhoven, transportation from Eindhoven to Antwerp, and
supplementary treatment at the
Aqua Tilis complex. We were 10 days away from
going to Holland when we got the call telling us that the Belgium health and safety officials had prevented the treatment from going ahead.
Carl is in tears. Mum is upset. I am depressed and we are all left feeling that we have been very badly let down. All that we can do now is to arrange for a return of the money.
What a depressing day!
12th January 2007
I am going!
Well things have changed again. Rose has decided that she is now going, so I am busily trying to arrange flights and hotel accommodation in Eindhoven, which is where the first part of the treatment will begin. I think she discussed it with Carl and also spoke to the clinic who is sorting out the treatment. The clinic seems to have allayed certain fears. I have offered to go with them, and the offer has been accepted. I will act as organiser and allow them to simply concentrate on the treatment.
10th January 2007
I'm not going!
Rose seems to have made up her mind that she is not going for the stem cell treatment. Basically I think that all the medical people here
have talked her out of it. She keeps talking now about waiting for the treatment to be available in this country. Personally, I don't think there is a cats chance
in hell of the UK sanctioning this treatment within a timeframe that would be of any earthly use to her. If I was her
I'd have gone for the treatment.
But at the end of the day, it's her body and her choice.
Her decision of course impacts on her husband and the two kids...not to mention my mother, all of whom are acting as carers. I'm not sure where we go from here as all conventional treatments are next to useless.
She may change her mind again of course, but I don't think this is likely. God this world is crap at times!
27th December 2006
Sorry for the lack of info
Well sorry for not updating this as often as originally intended. In summary:
- Rose has her good and bad days. On the bad, she is very weepy
- The kids are being fantastic caring for their mum, but I think they need time to just be kids. I need to take them out more
- The downstairs of the house is now the sleeping area for Rose. It saves her having to be taken up and down the stairs and she can participate more in the activities of the home rather than just staying in bed
- We need to investigate how to get Rose more help in the home. This will relieve the pressure on mum, carl and the kids. Having said that she has one person in particular - I won't mention here here - who has been absolutely wonderful!! Thanks J
- Rose was given a date for her stem cell treatment - February 2007. I think as the date draws nearer she has been wavering. She said she didn't want it yesterday, then phoned to say that she is going to have it. It may be nerves, or the fact that so many medical advisers here seem to be against it. At the end of the day, it has to be her choice. The treatment will be in Belgium as the Dutch treatments have been suspended.
25th August 2006
I visited my sister yesterday. She is painfully thin. She's not eating enough. At least she had something to eat while I was there. The kids are great when it comes to looking after her. I don't see her enough to administer the care she needs in the way she needs it. Having said that I felt great to be able to provide some help yesterday. I think in reality I shy away from anything that is uncomfortable, which means I don't participate as I should do. I watched Carl lift rose up and carry her up the stairs. She's lucky she's got someone to do that for her. They've had a hoist installed downstairs and that may help with the lifting. Apparently it's an antiquated piece of kit, but if it works, then it's a start.
3rd August 2006
I should do more
Speaking to mum I think it's clear that Carl and the kids do so much for Rose. The kids are called every couple of minutes to do something or other and never get the chance to settle. Carl does a hard days work and them becomes the carer for Rose. Mum says that he looks knackered. I know I should be doing more..
2nd August 2006
Useless trip to Birmingham
Rose was referred to a hospital in Birminham after her GP was concerned about her increased weakness. So Carl took a day off work and they took an ambulance to Birmingham, only to be told when they got there that there was nothing they could really do. What a waste of flaming time!
28th July 2006
Rose was told by Social Services that they could not feed her because there was a risk that she could choke. So that would have left her with no one to feed her during the day. They also raised concerns about picking Rose up if she fell on the floor. Needless to say, Rose was VERY upset and naturally enough Carl was very angry. They provided a hoist without a sling so alas this could not be used. Having seen the hoist, I am not sure how it could be safely or easily used within their home anyway! Social Services had a case conference and they have suggested a number of things.
- 1: They move from their home to a council house which is bigger. One of the ground floor rooms could be converted into a bedroom.
- 2: Ramps be fitted in the new house
- That Social Services provide 'professional' carers to feed Rose during the day
I think they are currently thinking about this and possibly arranging to view some of the potential council properties.
Incidentally, Rose has had two of her fillings removed already. She'll probably need another 6 trips to the dentist before that phase of the treatment is complete.
16th July 2006
Removal of fillings
Rose has got an appointment with a dentist that will remove her fillings. It has to be done in stages. The alternative is to wait for what she actually wants which is to be knocked out...this may take a while. We visited her today and she was considerably weaker than the last time I saw her. She was also VERY weepy. We've all come back home pretty depressed and very subdued.
10th June 2006
Removal of fillings
Rose went to her dentists to find out if they could remove her fillings there. Apparently she has to go to a hospital that will do this for her and put her under. So she's been referred to Manchester. More delays, but she doesn't want to make multiple trips to the dentists for the treatment. I can understand that, especially with her head shakes at the moment.
21st May 2006
Admittance to Hospital
Rose had to go to hospital last week for a week as her condition had deteriorated. She was just totally weak. At least in hospital she was made to eat a little. She came out early though. She's just very strong willed...she was even before the illness...and I think we are a little afraid of telling her to buck up her ideas and eat something. We may need to be a little cruel though. By pandering to her we may be killing her with kindness. Anyway she seems a bit brighter now she's back out of hospital.
27th April 2006
Trip to London
Rose and hubbie went to London to meet the doctor from PMC. She's been told that she needs to remove her fillings and that she needs to build herself up before any treatment can begin. But it looks promising. We'll speak to her later this week and obtain more details.
20th April 2006
Consultant refuses referral
From what I understand, my sister's consultant has refused to refer her notes to the MS clinic. She is having to get information from her GP instead. My mother is wondering whether the consultant can be compelled to provide the notes...something about a patient's charter. Will have to look into this. Needless to say, my sister is VERY upset.
14th April 2006
From the horse's mouth
I've acquired this link via someone who was kind enough to point me in the right direction. It provides witness accounts of stem cell treatments. The Multiple Sclerosis Resource Centre
10th April 2006
Rose has her initial appointment on 26th April. She'll be going to London with her husband.
09th April 2006
Well, Rose received a phone call from the company who she hopes will provide her stem cell treatment. We are hoping that her appointment has been bumped up and that she'll get to see them for an initial consultation soon.
28th March 2006
Another stem cell company
My sister is on contact with someone else who is also going for stem cell treatment. They are going to Ireland. I think rose assumed that it was the same company as the one she has been liaising with. However it's a different organisation. I have a sneaking suspicion from what mum says that she may be thinking of Ireland as a place to go for treatment. Will see what happens.
27th March 2006
A neighbour of my sister built a ramp for her to enable her to be wheeled out of the house. The kids were practicing how to manoeuvre their mother along the ramp...a tricky business! Unfortunately, the ramp broke under the combined weight of my sister, the wheelchair and Carl. We need to arrange for a more substantial ramp to be provided.
26th March 2006
Radio Interview aired
My sister's radio interview was aired at 8:00am this morning. Unfortunately we all missed it so we'll have to try and get a copy from BBC Stoke.
17th February 2006
Rose confirms that she will be interviewed by the BBC
15th February 2006
Rose is admitted to hospital overnight for steroid treatment. This is due to her sever weakness.
10th March 2006
Rose's local community held a series of fundraising events to raise money for her stem cell treatment. It was truly humbling to see so many people giving money with no though of reward or self publicity. One thing is clear...My sister is loved by many people!!
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21st February 2006
Rose and Carl have an article published in the local newspaper. (The picture will expand to larger article.)
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