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Dear all,

The BBC ran the story below as part of the MS Awareness week. I've only had this disease 2 years (dxed two years ago - no symptoms before) - but this story is not a pleasant read. I'm just not sure how typical this story is - you see these terms 'late stage MS', 'end stage MS' but I'm not sure what this actually mean. They tell us that we can expect to live a near normal life span, but I think I'd rather have a near normal life and a shorter life-span. Maybe this story is atypical, but you have to ask yourself when would you call it a day.

Ian


Mood varies over time in depressed MS patients

'There is no way we will give up'

Heather Oakley cares for her husband Paul, who has multiple sclerosis.
She describes a typical day in their life.

Paul sleeps on an inflated ripple mattress it is three foot six inches (1.06m) wide and lies on top of our five foot (1.52m) double bed.

I used to sleep in the one and a half foot gap left on my side of the bed.

About four years ago I retired to the floor and have remained there ever since.

At least I can roll over in the night, something we all take for granted, but something impossible for Paul.

I need to be near to Paul to hear him, when he wakes me up to move him, or suction out his excess liquid in his throat which he can't swallow.

Routine is key

The alarm goes off at 7am. Can I hear Paul breathing? Yes. Relief, then disappointment for him, (he doesn't want to wake up) and another day begins.

Routine is what keeps Paul alive, and living with us, me and our two daughters Ella, age 13, and Hannah, age eight.

But we all live with the time bomb, knowing one day Paul won't be here.

I switch Paul's radio on, and take off Paul's quilt, straighten his legs.

It's hard work because they are stiff, they have been in the same position all night, bent up to his right side.

A little pressure down on the legs stops the spasms.

I dip a pink mouth sponge into a water paste, which looks like thick wallpaper paste and pop it into his mouth to refresh it.

Thickened liquids are easier for the throat muscles to deal with because it moves slower. Paul is not meant to have anything by mouth.

I lower the inclined bed that is raised to 45 degrees to flat, so I can pull Paul up the bed.

I put my hands under his arms and pull, making sure I don't pull the shoulder sockets out - there are no longer any muscles keeping the bones in place.

I elevate Paul's upper body again to 45 degrees to prevent Paul's lungs filling with fluid.

I wipe the muck from each eye, -he can't sleep with his eyes properly shut anymore and they don't clean themselves as they should do.

Drug dose

The skin on his face gets very sore, a reaction to body temperature so Paul prefers to live in a cool environment.

Then drugs, which are put down a PEG, a tube which goes straight into his tummy.

Most drugs are now in liquid form and there are drugs which Paul absorbs through the skin to reduce his own fluids and prevent choking of the lungs filling with liquid.

I empty the urine which has collected overnight in the drainage bay.

Then I set up a balanced liquid feed which is fed through a pump at a certain rate, straight into his tummy via the PEG. It will last until 6pm.

Just before leaving for the school run with our youngest and my part time job at her school, I bend Paul's legs up again and put a pillow in between the two legs to prevent pressure sores.

I then leave Paul to listen to the radio until my return at 12.45pm.

Bath days

Monday and Friday are toilet and bath days.

The bladder is far easier to manage than the bowels. Paul has been using a catheter for over 15 years.

The first few times Paul cried. So when I get back from my paid job, I give Paul the once over. Then I start the toileting procedure.

I lower the bed flat, while I roll Paul from side to side to place a bath sling under his body, pull off his underpants and using KY jelly put suppositories in Paul's bottom to induce the lower bowel to work.

Then I have my lunch and tell Paul news. I have a moveable hoist, so after a while, when things start to move I attach Paul's sling, which will support him in the hoist.

I steer the hoist through to the bathroom then I run a not-too-warm bath.

I take Paul back into the bedroom which is large but full of boxes of feed, medical equipment, my female nick-knacks, Paul's Chelsea regalia, etc.

Paul is now toileted and clean, but exhausted. I clean and bleach the bath. Paul has had MRSA before and we all use the bath.

Desperate sorrow

I'm off to pick up our youngest from school. The girls and I will be in and out to see Paul in the course of the evening.

Paul will only be able to observe the practising of musical instruments by the girls or being talked at etc.

Paul, when he is in good form, can mouth a few words, raise his eyebrows, laugh silently which will cause him to choke, or screw his face up in desperate sorrow.

When Paul's not so good, it's hard to understand him and a slight flicker of the eye lids is a yes or no in answer to our questions. All are exhausting for him.

At some convenient moment in the day I will put Paul's splint on his left hand for a couple of hours.

This is to prevent his hand clenching into a fist permanently.

Paul has more drugs at 6pm and I'll stop the feed and switch the TV on.

Hydration

At 9pm, I put on a one-and-a-half litre plastic bottle of water into the pump so the water goes through the PEG to hydrate Paul overnight. I am convinced this is what keeps Paul alive.

At 10pm, there is another round of drugs then I bend his legs up into his sleeping position and put on his quilt.

As I'm lying on my mattress trying to get to sleep, I'm conscious of the noise from the pump and the ripple air mattress and Paul's erratic breathing. After a while we fall asleep.

We have made it through another day, and I'm wondering if it's tomorrow, when our life will change. Will it be worse?

Paul was diagnosed with MS when he was 29. At first the vision in his eye had been affected.

He spent a year going to Moorfield's eye hospital. By the end, he had started to have pins and needles in his arms and hands, and started to stumble when walking.

Excellent support

I remember picking him up and him telling me the good news: "He didn't have a brain tumour."

Paul was permanently in a wheelchair from his 30th birthday.

He continued to work by applying for and obtaining jobs according to his progressive disability, up until our youngest daughter was two.

We have excellent support from our local hospice St Joseph's, where Paul goes for respite, so I and the girls can escape the constraints of caring.

Paul is not so lucky - he can't escape.

We have jointly agreed as a family, that caring for Paul at home, with the risks of leaving him alone for a maximum of four hours, and the strain it places on us as a family is better than our home (a ground floor flat) becoming a focal point for constant comings and goings of care professionals.

However, every Tuesday for three-and-a-half years we have a devoted Marie Curie nurse.

Carole comes for seven hours. Very fortunately for Paul a fellow Chelsea fan.

This might seem like one big moan from start to finish, and a lot to bear for the girls and myself.

But Paul has shown such courage, great humour and compassion for other people with bad diseases.

We have never considered giving up. This is where he belongs, with us.

Paul and Heather Oakley told You and Yours their story as part of a week of reports on Multiple Sclerosis.

Source: BBC News Health Copywrite BBC 2006

That is very sad and depressing.

I stopped reading after "...suction out his excess liquid in his throat which he can't swallow."

This is the side of MS that scares us all!

very sad story...however it also makes me think that if i was ever to get to that point that i would have a loved one who would help and be as
dedicated to helping him thru all that as she did...

chris

lets not forget that there are a variety of kinds of MS and the RRMS that most of us have is not like this. We also have over 100 drugs in trails and the technology for discovering things is growing at an accelerated pace. You can't accept everything you see in the news at face value, you often need to dig to findout what they are actually talking about. never give up. napay

Dear all,

My intention wasn't to scare - but this is on the BBC website (with pictures) and represents an extreme case of MS. Doesn't fit with my MS nurse telling me that only one in four MS sufferers end up in a wheelchair, most have near normal life spans etc etc. But in the back of my mind the sort of suffering this poor guy is experiencing scares the pants off me. it also make me consider my own mortality and at what stage (if it came to it) I would call it a day. It all depends on your defintion of what is life / living.

But with a positive hat on - the drugs in the pipeline must bring hope and the focus on neuro-protection and repair should hopefully mean that we will not suffer in such a dreadful way.

Ian

Ian, Gary has had MS, we know now, for over 25 years. He walks on a cane and sometimes without. He is legally blind, RE no sight, LE limited sight. He still does a lot of what he wants to do. He helps me frame and process t shirts. He is limited but not a lot. I guess it has happened over time, so little things go away without much fanfare. Except the sight. Had he still had sight, he would do much much more. He cuts the yard, with a riding mower, he tills in the garden some, not as much as before. I watch him push himself to HIS limit. He knows how far he can go and usually stops. My point is, Gary's MS paralyzed him many times in the 1980's from the neck down. He was doing what he wanted to until the late 90's when his MS went really active; one attack every 4-6 weeks. Copaxon stopped that in time. HOPE. Hope for a cure, hope for a bettering of symptoms, hope for anything but this article. When Gary was finally dx'd, I decided then that I would not think about wheel chairs, bedridden lives, death, and anything else the media wants people to see. I would only hope he gets better.

I know we appreciate all your posts, Ian, even this one. It shows us a possibility in graphic detail(!) of a future that we all fear. As Amelia said, the key is hope; the drug pipeline is one hope, ongoing research is another. As bleak as the future looks at time, as much as I cry (NOT good because of the inflammation/mucus it produces! but unavoidable at times), there is hope for all of us getting better, I TRULY BELIEVE!

I hear you Ian, I guess we all have different breaking points and i'm sure some of us have none at all. This is like a slow torture that gradually strips away everything you enjoy in life. As you lose certain abilities you find others that you still have to replace them, but i think gradually the list will run out and living will become more and more like exisiting instead, then i guess it's time to make some dicesions, its like a big hour glass and the sand is running with nothing to stop it... rob

oo

5 years ago I remember smartly striding down the street without too much of a problem. These days I can be blown over by a leaf! The contents of your story, Ian, to a degree I can largly relate to. My point is that MS can advance very quickly and the gradual loss of function is simply horrible! Whilst we can keep one eye on the progress of new drugs, these are going to take a time to develop. For all of us who are presently caught within the MS spotlight, we must do everything to overcome this dreadful condition ourselves, now by whatever means are available to us.

Phil.

Somtimes it's so hard to be up.. you just get so tired, it's so hard to do anything, they say that what dosen't kill you makes you stronger i'm not so sure.. thx for starting this thread Ian it's somewhere you can just say how you feel, it's not always good..

Thanks everyone for their contributions. I'm sure this is an extreme case and very few will see such a dreadful ending.

I certainly don't want to be held responsible for a mass sucicide of MS sufferers in Central Park (or wherever). And I'm fairly hopeful that the sort of work being funded by the NMSS on neuro-protection and repair will come good.

But it's also important to be honest about how this disease might progress for some. I'm sick of my mother telling me that Mrs X has had it for 25 years and is doing fine.

I once saw this disease called 'the disease of losses' and it certainly rings true. Let's hope some breakthroughs are reported soon so some of the losses can be clawed back.

Ian

Ian,
Don't count your chickens before they hatch. You could be run over by a truck tomorrow and never progress. Or on a better note, a cure is lurking around the corner somewhere.

I'm not sure I have an answer for myself to the question Ian posed - When is enough, enough? But I have an approach which stems from the idea of me crontrolling my condition, my life and by implication my death!

Others might like to look at the Living Will (Advance Directive) but more importantly in the context of this thread the Values History Statement found here http://www.euthanasia.cc/lw.pdf from http://www.euthanasia.cc/lwvh.html. An interesting way at least perhaps to measure how much is enough. (Now this might have offended some with strong religious belief but it is only my opinion! )

[As a PS. The LW is constructed for UK Law but the site has a link for US covering most States. I understand it is copyright but free for personal use.]