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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



1st February 2007

It cancelled..damn!

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:



25th August 2006

Painfully Thin

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

Update

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.

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

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10th April 2006

Appointment confirmed

Rose has her initial appointment on 26th April. She'll be going to London with her husband.



09th April 2006

Treatment soon?

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

Ramp broken

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

BBC Interview

Rose confirms that she will be interviewed by the BBC



15th February 2006

Hospital treatment

Rose is admitted to hospital overnight for steroid treatment. This is due to her sever weakness.



10th March 2006

Fundraising

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!!




21st February 2006

Newspaper Article

Rose and Carl have an article published in the local newspaper. (The picture will expand to larger article.)


pictures from fundraising event



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