Bungalows!

Bearing in mind I hadn’t actually seen the bungalow before we moved, Colin was a bit worried in case I didn’t like it!

Sometimes you just struggle on, dealing with things that became too difficult a long time ago and you pretended not to notice. And then one day you think ‘Nah, that’s enough now’, and you do something radical to make life easier. That’s how easy it was to decide to move to a bungalow. No soul searching or battling with emotional attachments, just a sensible, rational decision to improve our quality of life. So we put the house up for sale at the beginning of October, and on the day the Estate Agents’ board went up our next-door-neighbour’s best mate knocked on our door and said he would buy it.

No immediate panic ensued – he had a house to sell and the market wasn’t moving particularly swiftly so we had a tentative look at Rightmove listings of bungalows that were up for sale and hoped that something vaguely suitable would turn up when we needed to choose one. We thought we would have plenty of time, because the people buying our house might not find a buyer for theirs any time soon. And we thought wrong, because a few short weeks later they had a buyer lined up – and a first-time-buyer at that – and it was time to decide on which of the delightful selection of bungalows we could make into our home.

We shouldn’t really have been surprised at the dismal state of these bungalows, because when you think about it, there aren’t that many in existence and they generally only come up for sale when somebody dies or goes into residential care. This could well mean that one or two progressively elderly people have lived in these homes for 30 or 40 years, and have either been unable, or simply didn’t see the need, to keep these properties up to date. We viewed bungalows with their 1970s carpets undisturbed by a hoover for many years, and their net curtains hanging proudly to disguise the rotting frames on the single glazed windows. We viewed a generous selection of ancient fitted kitchen units, some inhabited by cheerful families of rodents, and some so rotten you could poke your finger through them. We viewed bathroom suites in fetching shades of faded avocado, rose blush and sky blue, accented in varying shades of mould. And these things weren’t the worst problems these bungalows presented. We discovered how little thought had apparently gone into building them, and discounted so many on the basis that they were either up steps, down steps, had gardens on many levels separated by steps or – irritatingly – actually had steps inside them! And did anybody actually think about the layout of these places and how people could live in them? Bedrooms dotted around higgledy-piggleday, toilets placed right beside the glazed front door so that the whole neighbourhood would see your 3 am journey in your nightie from your bedroom at some remote corner of the bungalow, across your hall and past the front door to the .loo if you put the light on. If you wear a nightie of course. I don’t, and neither does Colin. More bungalows were ruled out on the basis of stupid layout than dilapidation, and that’s saying something. And then of course, the front door needed to be in a place that made it possible to build a wheelchair ramp so that I could actually get in, and the bathroom had to be spacious enough for my electric toilet riser. You’d think bungalows would be designed with disabilities in mind. Sadly, nothing could be further from the truth. Many ‘front’ doors were actually side doors leading onto the driveway/parking space, leaving no room for a ramp. Many others had narrow porches added that made wheelchair access impossible. Estate Agents looked bemused when Colin measured bathrooms and shook his head……..

But of course we had to choose one, and there was one that stood out from the others , purely because it was in a nice area and it had an en-suite shower room, and although it only had 2 bedrooms we decided we could replace the kitchen and bathrooms, all the windows, facias and guttering (all rotten) rip out the carpets (equally rotten) and put down some nice wood flooring, and add a conservatory to give us the space we needed. We were a bit worried about the lack of parking space compared to our old house where we had room for 6 or 7 cars with ease, but it was the best option at the time and we decided we’d suck it and see.

So the sale progressed at snail’s pace, and by the end of January the solicitors started to make noises about signing contracts, so we did, thinking it was now just a matter of time before it all went through. There were various delays while the solicitors thought up more questions they could ask each other, and apparently nobody explained to the first time buyers that they would have to give notice to close the account their deposit was in, but we waited while all these things got sorted out. Finally, on the 1st March it seemed that we were ready to exchange contracts.

But all was not as it seemed. We learned that day that one of the joint owners of ‘our’ bungalow had decided that they should have got considerably more money for it, and refused to sign her contract. She apparently spent a large portion of the weekend screaming abuse down the phone at the Estate Agents, as she felt she was being robbed and they were entirely unable to reason with her. On the Monday they suggested we might be able to appease her if we upped our offer by £20,000. It wasn’t worth that much, and there was no guarantee she’d be happy with that anyway, so we withdrew our offer completely. So this left us in a bit of a predicament – we had nowhere to move to, and we didn’t want to lose our buyers. We looked on Rightmove, and there, new on the market, was the bungalow of our dreams. Colin looked at it that afternoon, and fell head over heels for it. It was in a very quiet part of a village we love, it was bigger than the first bungalow, and it didn’t need any work done to it other than alterations to the bathroom that we would have to do wherever we moved to. We put in an offer the same day, Monday 5th March, with the proviso that we needed to complete quickly before our buyers’ mortgage offer ran out. They accepted our offer, but the next day they discovered that their Title Deeds had been lost by the solicitors who had been storing them, and they would have to apply to Land Registry for replacements. I wasn’t too bothered initially, because Land Registry has been computerised since the 1990’s and you can normally get replacements instantly by email. Unfortunately this turned out to be more of a problem because this bungalow was built before it was a legal requirement to register with Land Registry, and the Title Deeds held by the solicitors had been the only ones in existence. Land Registry would have to start from scratch with a whole new registration, which could take up to 12 weeks they told us. We said we’d plough on and hope for the best. The Estate Agents and Solicitors thought we were probably slightly mad, but we all agreed we’d give it our best shot and if it didn’t work out at least we’d tried.

The Title Deeds came through in 4 days much to everyone’s astonishment, and all the paperwork was done in record time thanks to our amazingly pro-active solicitor, the wonderfully efficient sellers, and the best Estate Agents in the world (Anker & Partners of Banbury – never use anyone else!). There was a slight delay in exchanging contracts because nobody had explained to the first time buyers at the bottom of the chain that they would have to transfer their deposit to their solicitor and strangely their solicitor didn’t think to ask them for it…… Ankers got that sorted, I think we were all reduced to using words of one syllable by then. Anyway – we moved on 29th March – just before our buyer’s mortgage offer ran out. The sun shone, family rallied round and between them and our lovely removal men somehow everything got moved from Bodicote to Bloxham without any tears or tantrums. This bungalow has a sensible layout, with all 3 bedrooms together with the bathroom at one end, a generous hallway with lots of storage, and a newly fitted kitchen next to the sitting/dining room. The carpets are nice, the garden is beautiful, and there is more than enough parking space for us and any visitors. And best of all – we don’t have to battle with the stair lift twice a day. In short, we love it here, and it really feels like this was where we were meant to end up. They say moving house is one of the most stressful things in life. It most definitely is, but I think it’s worth it if it means, in the end, that life becomes easier 😊

A bombshell!

So – the news is out on the BYM338 trial doses. There is no easy way to say this. I was on the Placebo. I never had a single drop of the drug. Ever. And yet – I thought I was having something, I thought I was doing quite well, I thought I was getting stronger. What does this mean for people with IBM? I learnt this shocking piece of information a couple of weeks ago, and it has taken me a while to process it, but I think now I’m ready to put together sentences without swear words and make some sense of it all.

I wasn’t expecting this, it caught me off-guard. One of the other trial patients at the London hospital mentioned that he’d been told his dose. Initially I wasn’t going to ask what I’d been on because basically I thought I knew, but after a week or so curiosity got the better of me and I emailed the doctor who’d been in charge. His reply came back within minutes. Now, don’t get me wrong, I knew when I signed up for the trial that there was roughly a 1 in 4 chance that I would be in the Placebo group, but my first reaction was anger that they had put me through all that for, effectively, nothing. So I let that feeling sit for a little while before I was able to reflect that actually it hadn’t been for nothing. I did get stronger, which of course I wouldn’t have if it hadn’t been for the trial. But if it wasn’t the drug that did it – what was it?

The answer to that was another bombshell really. It had to be the exercises, perhaps coupled with the extra protein we were encouraged to incorporate into our diets. And if that was the case, I could have carried on with the exercises, kept up the higher protein intake, and I didn’t need to have lost all the strength I’d gained plus more besides.

I didn’t need to have lost strength. I could have carried on exercising. I could have carried on eating properly. I could have carried on getting stronger.

Yes, I know I repeated myself there, but that was the thought that went round and round in my head for days. And I wasn’t angry with the drug trial process any more, I was angry with myself.

The trial ended very suddenly, and now I have looked at the published trial results it seems likely that there were concerns about the heart health of some of the patients, particularly among those on the highest dose. Of course we didn’t know why it had been stopped, it just seemed very spiteful for Novartis to cut off our only lifeline without explanation. And obviously the exercises had been hard work, and it looked like it had all been for nothing, so I chucked the exercise sheet away along with all the other trial paperwork and never bothered doing any again. Without having to report my eating habits to the trial doctor every month, I forgot all about the need to eat protein and basically ate what I liked. Not bad food, I’m not a junk foodie or a chocolate freak or anything like that, but I just went back to not thinking about what I was eating.

After a while I started doing some gentle yoga in the chair, and it was lovely for relaxation and keeping the joints mobile, but it wasn’t designed with IBM patients in mind, as the trial exercises had been. There was no great benefit for the effort involved, so that fizzled out too. I sat in my chair, and got very good at sitting in my chair, but nothing else improved through my inactivity.

But now, armed with the new information that I’d never had any drug to help me gain strength – and yet I still did – there is only one conclusion. It IS worth doing the exercises, 2 or 3 times a week, even if they hurt, even if they take time and effort, and it IS worth paying careful attention to what you eat because you are what you eat and who amongst us wants to look like a Marks & Spencer fresh cream meringue?

I feel like I’m a little bit ahead of the game here because as you know I started following the Plant Paradox diet last November and I’m more than 2 stone lighter (30 pounds to be precise) and I’ve been doing very gentle arm and shoulder exercises to see if they respond at all – and yes, they do. I have a stronger grip and can unclip our dog’s harness easily, take lids off things, reach light switches again……nothing dramatic, but I think it proves the concept that exercise does help with IBM. And this follows the latest thinking of the leading IBM doctors, who tell us to exercise every day. With this in mind I’m going to start doing the exercises again 2 or 3 times a week and see how far I can go with this combination of diet and exercise.

I covered the principle of Plant Paradox and similar diets designed specifically for patients with auto immune diseases in my last blog post but basically it is this: the immune system is controlled by the health of the gut. Auto immune diseases are fundamentally an acquired food allergy that wouldn’t happen if we had perfectly healthy digestive systems, but modern life causes all manner of damage to our gut, particularly the protective lining that is designed to stop tiny food particles escaping into our bodies and causing inflammation. We are all different and have different sensitivities and reactions to foods, but if we can eliminate the stuff that is causing our immune system to over-react, the auto immune response will stop. Sounds simple and it is, but the downside is that it’s going to be the foods we love best and eat most of that are causing the damage, and we have to eliminate everything suspect for a considerable amount of time – it can take more than a year to heal the gut and calm the immune system. It’s not for the faint hearted but it’s an active choice – do it and you might get better, or don’t do it and you will undoubtedly stay the same.

My experience on the drug trial proves to me that exercise helps, and not exercising only makes me weaker. My experience on the Plant Paradox diet proves to me that I feel a million times better when I don’t eat grains, sugar, nightshades, legumes…. well everything nice basically. Is it calming my immune system? I don’t know, I’ve had a cold, the first one I’ve caught in years, and I’m recovering from a tummy bug – again, the first I’ve had in living memory. But what if it did? What if my body stopped attacking my muscles, and what if exercise could make them stronger again? What if I didn’t even try?

Anyway, if you were on the trial and they haven’t told you yet what dose you had, that information is available to you if you want it. I hope yours doesn’t come as such a shock to you as mine did to me

As an afterthought – do any of the other trial participants still have their exercise sheets and would be able to let me have a copy please?

Auto Immune Disease – a beginner’s guide

Back in November I was very fortunate to hear from a friend with Inclusion Body Myositis about her consultation with a very eminent heart-surgeon-turned-dietician, Dr Stephen Gundry.  Dr Gundry has a thriving practice in California where he sees many patients with a variety of health conditions, and has written two ‘diet’ books, the first being entitled Diet Evolution which was recently updated to the current Plant Paradox book.  He became interested in nutrition whilst working as a cardiologist, having met one quite extraordinary, seriously ill patient who turned his health around purely by changing his diet.  I’m not going to quote the whole book at you, because hopefully you will be interested enough to look at it for yourself, but it recounts his progression to working with patients with varying auto-immune conditions and achieving great results by modifying their diet and adding a few supplements.   Dr Gundry carried out a full spectrum of blood tests for my friend, and his opinion was that by following his diet recommendations she could improve her health and regain muscle strength.   

Now I have the greatest respect for this lady.  She is a very practical, no-nonsense sort of person, and if there’d been a hint of hokum about him, she would have been onto it like a shot.  But she felt he was genuine, and that was good enough for me.  I bought the book.  And it got me thinking about our modern-day way of eating, and it all started to fall into place. 

Up until fairly recently, people normally lived out their lives in one geographical area, which had been home to their ancestors for probably several generations.  People didn’t have the opportunity to travel, so they married someone from the same community, or one very close by.  They ate food that was produced locally depending on what they could grow in the local soil, and meat from animals that ate more-or-less the same.  There were no chemical fertilisers, they used the by-products of their livestock to feed their crops, and food was eaten fresh when in season.   Over the generations, our bodies got used to the food sources, produced the right digestive bacteria to deal with those foods, and people were, in the main, pretty healthy.   The water sources were generally clean and unpolluted, and there were no airplanes or cars polluting the atmosphere until fairly recently, and our human bodies could cope with the environment and the pace of life. 

Then suddenly, and only in the last 40 or 50 years or so, travel and transportation became widespread.  Food could be flown around the world to people who had never had the opportunity to eat it before, and people were able to relocate to a completely different part of the world, and eat the foods native to their new home.  Gut bacteria, used to dealing with familiar substances for many generations, looked at the new foods they were suddenly expected to deal with and shrugged their shoulders.  During this time, the food production industry gathered momentum, and fuelled by the supermarkets’ demand for cheap food, began to add chemicals and preservatives to our food to add to their profitability. Farmers began to increase their crop yield with chemical fertilisers and weed killers, which are absorbed by the plants we eventually eat, and remain in the soil.   Fast food became popular, and over-fatty, over-sugary food became readily available – a regular part of our diet, instead of an occasional treat.  Don’t get me wrong, I’m not criticising or pretending that my eating habits are any different.  I’m just setting the stage. 

At the same time, the pharmaceutical industry gathered momentum, offering financial incentives to our doctors to prescribe chemicals that we probably didn’t need, followed by several more chemicals to offset the side-effects of the original one.  Even the drugs that are good for us, lifesavers sometimes, like antibiotics, steroids or painkillers, destroy the natural balance of our digestive systems and we lose the good bacteria that we rely on to digest our food, along with the bad bacteria that were making us ill.   Adding to this chemical mix, none of us can avoid the increasing levels of air pollution and water pollution, so how on earth are our bodies supposed to cope?  We spent thousands of years adapting to digesting clean, locally grown food, breathing clean air and drinking clean water, and then in less than two generations we’re eating substances that our bodies have never encountered before, breathing in car fumes and drinking water doesn’t even taste like water.  Our modern lifestyles are hectic; stress, anxiety and depression are widespread; greed and discontentment are fuelled by media advertising from all directions. 

Some of us cope well with these unfamiliar substances of course, but some of us don’t.  You’ll know which of these groups you belong to.  If you’re fit and well, you’re coping.  If you’re ill, particularly with an auto-immune disease, then you’re not.   

I have a theory that some of us are born with a pre-disposition to auto-immune disorders.  Under ideal conditions, these diseases wouldn’t necessarily manifest, but nowadays who actually lives under ideal conditions?   If you have that pre-disposition,  I think it just takes a combination of a couple of trigger events to kick start an auto-immune reaction.  These triggers could be severe or prolonged stress, a virus, a bout of food poisoning, a heart attack, an injury, a bereavement, a change of location, redundancy…..  All these, and many other things, put our bodies under tremendous pressure, and sometimes the medications we are given to help us deal with them become a factor too. 

Our gut is the largest organ in our immune system.  It’s a fragile structure, with a lining just one cell thick in places, and partly covered in tiny villi (little fingers) that take the nutrients out of our gut contents and transport them to where they’re needed.  Stress, illness, medications and poor food choices erode the lining of this fragile structure, and can cause the villi to die.  We might not be getting proper nourishment from our food, and the undigested mess becomes home to unfriendly bacteria that wipe out the good bacteria that we rely on to keep us healthy.  Even worse, some substances can leak out of a weakened gut and settle in places they were never meant to be, setting off a reaction in the immune system.  The immune system is confused and begins to mistake our body’s own cells for more of these invaders, and an auto immune illness is born. 

Ta Da! 

So does knowing all this make any difference to our overall health?  Unfortunately not, but it does give us the opportunity to decide whether it’s worth trying to do anything about it.  If we have a disease (or several, in some cases) that is caused by our own body attacking its own cells, then it makes sense to me to start at the beginning, to look at how we can get rid of the unfriendly bacteria that is infesting our unhealthy gut, restore a good crop of friendly bacteria, and stop eating the substances that are creeping through microscopic gaps and holes in our gut wall into places they shouldn’t be, long enough for the gut wall to heal.  If we’re sensible we will start eating foods that our bodies are able to deal with, by which I mean the foods that our ancestors ate as those are the ones our bodies are adapted to digest.  If you’re really lucky, your ancestors will have existed on McDonalds, lasagne and chocolate cake, but mine didn’t so I had to think long and hard about the sacrifices I would have to make if I decided to go down this road.  There are no half measures, you can’t have occasional ‘treats’ or days off or you’ll undo all the good work you’ve done so far.  And it will take a long time before the gut can be fully healed, none of this is an overnight cure. 

As I said at the beginning, if anybody can remember that far back, I was introduced to the Plant Paradox, but there are other similar eating plans including various Paleo diets and the AI diets which I’d been aware of before but discounted because you’re not allowed coffee.  Having read and fully digested (!) Plant Paradox I decided that was the one I believed in.  It identifies the main ‘baddies’ in our diet as lectins, it explains the science behind all its guidelines, it is backed up by videos and blog posts by Dr Gundry, and has a knowledgeable and helpful Facebook support group.  

So –  what  are these lectins, and what they do to us?

Lectins affect everyone, but if you have an auto immune disease – maybe arthritis, diabetes, IBS, a thyroid condition, heart disease, cystitis, myositis, or if you are overweight, it’s useful to be aware of them because they are a direct cause of inflammation and autoimmune reactions in your body.

Lectins are a type of protein found in almost all plants including fruit, vegetables, pulses and grains, and the animals that eat them, including their meat, eggs and dairy produce.
Plants exist to reproduce. They have no interest in being eaten by us, or even by animals or insects. They don’t have the option of running away when they are under threat, so they became experts at protecting themselves and their babies with natural pesticides and repellents designed to paralyse, poison and/or kill their unfortunate predators. As far as plants are concerned, we’re just big insects and they are perfectly happy to poison us if it keeps us from eating them, so they’ve developed toxins and nerve agents specifically to discourage us.

Some don’t want to be eaten at all – like some types of kidney beans, which contain lectins that bind to our red blood cells and make them clot together, eventually causing death. Others only want to be eaten when their seeds are mature and ready to germinate if spread – think of the stomach ache an immature apple will give you, compared to the lovely experience of eating a ripe fruit. The lectins in beans and apples, and many other plants, will cause these acute, easily recognisable reactions, but most are more subtle. If we were insect-sized, we’d notice the effects straight away, but we’re bigger so we don’t notice much until the poisons build up over time. But even before we notice, the damage is being done.

Some can damage the lining of your gut, so that proteins from your food can invade parts of your body they were never meant to get to, and activate your immune system to attack them along with your own body cells. Once these lectins get into the bloodstream, they can potentially invade any part of our bodies.

Having read the book, I’ve now understand why potatoes make me ache, why gluten-free stuff makes me feel worse, why lentils and pumpkin seeds make me instantly violently sick (both ends) and why I always had stomach ache, and I’ve learned the difference between A1 and A2 cows and why bone broth isn’t necessarily good for you.  And I can drink coffee and eat chocolate every day!  I started following the guidelines in mid-November and learned as I went along.  I’d say I’ve been doing it properly since 1^st January, when I finally managed to give up my morning shortbread biscuit.  I eat lovely food and I’ve lost 15 pounds without trying, and without being able to do any exercise.

But what about my auto-immune disease, I hear you ask.  I wouldn’t expect to see any change in my condition for a long time yet because my gut is still healing.  But I feel so much healthier, and my digestive issues and food sensitivities are a thing of the past.  The weight loss has made it much easier to move around and seems to put less strain on my knees as they are nowhere near as painful as they were.  My balance is improving and I can shuffle a few steps forwards or sideways without a walking aid, something I couldn’t do at all a few weeks ago.  Life is easier, and nicer.  But back to the point – IF I can repair my gut and stop giving my immune system anything foreign to react to, could I regain any of the muscle strength I’ve lost?  Well, my friend asked Dr Gundry that question and he said that she could, because she still produces stem cells and her body will naturally repair itself. 

I’m going to leave you with that thought, because I can’t improve on that.

Freedom! (well, nearly)

 

It’s been a while since I’ve posted here, and it’s not because I haven’t had anything to talk about because actually I’ve been quite productive – just not in the way that I would like to have been. In the 16 or 17 months since the BYM338 drug trial was cancelled, my IBM seems to have gathered momentum and I find myself struggling with so many new things every day. These are not the things that you want or need to hear about, and I don’t want this to become a pity party so I will try to concentrate on the positives…..

 
Spent the winter months trying to get myself as healthy as possible, took vitamins and a myostatin inhibitor capsule (Epicat) I found online much beloved of body builders and athletes, neither of which I am. I did a very gentle yoga-in-the-chair routine every other day which I really enjoyed and every day I tell myself I’m going to start again but for some reason I don’t. I’m sure these things were very good for me physically, but mentally I just seemed to drift down and down, until I had no interest in anything at all and that’s not really like me. Then a friend found something called Ocean’s Alive Marine Phytoplankton and he told us all how well he was feeling since he started taking it and I thought it was definitely worth a go.

 
And it was! My arthritic shoulder and knee stopped hurting so badly, my sinuses cleared and the fog of exhaustion lifted to the extent that I could give up my beloved afternoon nap. Now this wasn’t quite the sacrifice that it sounds, because I’d been struggling to get off the stair lift at the top of the stairs for some time, and I’d often thought that the effort it took to lift my legs into bed far outweighed any benefit I was getting from an hour or so of sleep, but anyway I didn’t feel I needed it any more so that was that. Somehow everything seemed much more bearable and I decided to tackle the wheelchair problem, having been quite disheartened by The Wheelchair Man and the Wheelchair Clinic’s tendency to go round in circles (figuratively speaking, although perhaps quite literally for all I know) as they couldn’t bring me a wheelchair to test drive because they don’t have any with riser seats, but couldn’t approve me for a wheelchair until I’d successfully completed a test drive. To cut a very long and stupid story short, I suggested to them that the best way for them to get rid of my file off their desks was to give me some money towards a wheelchair that I would find myself, and they agreed quite enthusiastically. Took a while to get the contribution of course, and it turned out to be the princely sum of £1800.00, but every little helps, as they say. I found a lovely friendly Wheelchair Advisor from Easy Mobility in Ashford, Surrey, who brought me an Invacare TDX SP2 demo model, complete with rising seat and several other useful features, to try out. I loved it and they offered me a great deal on it, so I bought it.

 
I hoped it would give me more freedom but what I hadn’t taken into account was that I actually need someone to help me with the footrests when I get on and off the chair, and to open/close doors if I want to go outside, so I haven’t used it as much as I’d hoped, but it’s there when I need it. Now, we live in quite a weird sort of place, it’s technically a village but we are on a main road away from the village centre and there’s not really anywhere within pootling distance and there’s no way I’m crossing this busy road in my wheelchair, so the next logical step was to get a vehicle that I can drive my wheelchair into. This sounds like an easy mission. It’s not. I didn’t want one that I would have to sit in the back of, I wanted one where I could sit in the normal passenger seat position, and this limited our options enormously but we found some lovely people in The Wirral (Lewis Reed) who specialise in these conversions and they sorted out exactly what I needed. It’s worth saying at this point that my Invacare wheelchair sits a bit higher than most, so headroom was an additional complication but a VW Caravelle with a ramp and drop-down suspension fitted the spec perfectly plus it came with a free teddy bear so how could I resist? Again, it’s not something I can use without help so I’ve only been out in it once so far, but it was great, and it’s there when I need it.

 
The final development is that I have had to start the ball rolling to get a carer to come in at lunch time to help me make myself decent again after going to the loo. I could pull my own pants up until quite recently but it’s quite a tricky manoeuvre when you need to hold on to something with one hand and the other hand won’t reach behind you anymore and eventually I had to admit defeat. I’ve cut down my coffee consumption quite dramatically but I still have to ask Colin to pop home at lunchtime to help me and he finds this an unwelcome restriction on his busy retired lifestyle. Anyway, the advantage to being in the Care System is that you get access to emergency care if you need it, so if Colin was poorly or needed to go away it should be possible to get someone in to cover the things he does for me, although I’m not sure how they would go about lifting me off the blooming stair lift.

 
On the subject of the stair lift, you may understand this – our local installers don’t, and neither do the manufacturers, but I need the rail on the landing to be modified in some way so that the seat goes up to a height that I can get up from. I envisaged extending the rail and sloping it upwards – we have plenty of room for at least an additional metre of rail, and I could get off at the end where it would be higher, and roll it back to the existing lower bit to get on it. Well of course you can’t do that! The manufacturers want to make an entire new rail (of course they do, at £2.5K+) which incorporates the extra height I’ve asked for right from the bottom of the stairs and maintains that extra height all the way up the stairs, around the bend at the top onto the landing and then stops in the same place as it does now, albeit about 12 inches higher. (I’m old, I work in inches). And yes, without a doubt it would be high enough for me to get off. But how on earth would I get on it? Ladder? Trampoline? Mounting block? They can’t grasp that I need two different levels, one for getting on and one for getting off, because they say I manage alright at the bottom. That’s because it rises up vertically before spinning around the newel post, and when I come down I can stop it before it gets right to the bottom and get off, but of course I get onto it when it’s at its lowest point. Am I making sense? Or does it sound like the ramblings of a mad woman? I know what I mean. I wish they did, it would save Colin having to lift me. The OT said she would look into it and see what could be done… Let’s not hold our breath.

The Wheelchair Man

The first step towards getting your hands on a lovely shiny new power wheelchair from the NHS is to be visited in your home by an Assessor from the Wheelchair Clinic.  My lovely OT referred me, and a letter arrived telling me that I would be visited early in September.  Exciting stuff!  So the appointed time came – which is more than you could say for the Assessor!  We waited an hour after the appointment time before we rang them.  They cheerfully informed us that they’d had to cancel my appointment, and would send me a new one through the post.  The letter arrived a couple of days later, apologising that circumstances outside their control had made it necessary to reschedule, and gave me a new date 3 weeks later.  

On the new appointment day, we didn’t really hold out a lot of hope but, bang on time, the doorbell rang and the adventure began.  Colin ushered the Wheelchair Man into the sitting room.  “Ooh, hello” said the Wheelchair Man, shook my hand unenthusiastically, and put his crocheted shoulder bag down on the floor by his feet.  Our dog loves nothing better than a new bag to investigate, and immediately stuck her nose in it.  The Wheelchair Man glared at her.  Normally I would call her away, but I didn’t.  Instead I admired the bag, and he told us that it had been crocheted for him by a friend.  “She’s very clever” I remarked.  Turned out the friend was a ‘he’, not a ‘she’.  Possibly my faux pas did not endear me to the Wheelchair Man.

So he got his notepad out of his crocheted bag and asked me to describe my day.  I showed him how I can raise and lower my armchair to get out of it, and told him I can walk to the downstairs loo, and to the kitchen to make coffee.  Game over.  They don’t provide wheelchairs for socialising, he told me.  They only supply them if you can’t walk at all around the house.  I pointed out that I have a progressive disease, and that day will come sooner or later.  I pointed out that when that day comes it’s a bit late to start thinking about ordering a wheelchair that could take months to arrive.  He wrote something in his notebook, I don’t know what.  “Stroppy cow”, probably.

He said he had a power chair in the van that I was welcome to try out.  I asked him if it had a seat that would lift me up.  The Wheelchair Man said that the NHS don’t supply chairs with elevating seats.  I told him that I knew several people with my condition who had been provided with NHS wheelchairs, and they had paid themselves for the elevating seat to be added.  He said that he’d worked for the Wheelchair Service for 20 years and has never heard of such a thing.  Anyway, I said there was no point in him bringing the chair in because I wouldn’t be able to get out of it safely.  He suggested that Colin would be able to help me out, and Colin filled him in on the mechanics of getting someone with IBM out of a low chair, making it quite clear that he wasn’t going to risk me falling.  

So the Wheelchair Man said I will have to go the the Wheelchair Clinic for a test drive in case I couldn’t do it and ended up driving under a bus or something.  It crossed my mind that I don’t see an awful lot of buses between my sitting room and my kitchen, but that didn’t seem like a conversation I needed to get into so I left it.  So I asked the Wheelchair Man, because I was genuinely interested, how I was going to get to Wheelchair Clinic.  He said he would send a manual wheelchair and I said I’d already got one but I can’t get out of it any more.  He asked me if it had been crash-tested, and I confessed that I had no idea.  Colin took the Wheelchair Man out to the car to show him our wheelchair, which is in the boot of the car along with the electric riser seat that until fairly recently lifted me out of the wheelchair quite successfully.  Out of the front room window, I could see the Wheelchair Man flapping his arms in horror.  Apparently my wheelchair hasn’t been crash tested and I mustn’t use it, and I mustn’t put the riser cushion on it either.  Ever.

So he outlined his plan for getting me to the Wheelchair Clinic, which involved sending patient transport, a Proper (crash tested) Wheelchair and portable ramps to fetch me. “Great” I said.  “How am I going to get out of the wheelchair when I get there?”  Apparently they can park me next to a bench that will raise me up, all I will need to do is shuffle myself sideways off the wheelchair onto the bench.  I know I can’t do that, but I suppose they can slide me over if need be so in theory that’s do-able.  They don’t have any test chairs with rising seats of course, but I guess we can repeat the slide process back into my Proper Wheelchair.  Patient transport can bring me home and wheel me up a ramp into the house.  “How am I going to get out of the wheelchair when I get home?” I asked.  The Wheelchair Man had no answer.

While he was here, I thought I would ask him if he knew anything about Vela Tango chairs, which are basically office chairs with a powered lift function.  The Wheelchair Man flapped his arms.  “No,no,no” he cried.  “People have been MAIMED using those”  He suggested that if I have that amount of money to throw away I should give it to the dogs’ home.

After a few more pleasantries the Wheelchair Man gathered up his crocheted bag and got up to leave.  Our dog hopped up onto my lap to say goodbye, as she always does when visitors leave.  The Wheelchair Man glared at her.  He shook my hand unenthusiastically, and our dog took the opportunity to lick the back of his hand.  The look of utter disgust on the Wheelchair Man’s face made the whole morning worthwhile.

A week or so later the entirely useless manual wheelchair arrived.  I haven’t heard anything about the power chair but I assume from what the Wheelchair Man said that I don’t qualify for one.  Hey ho. 

Greetings from 2013

That’s me in green – carrying my 4 stone of extra steroid weight, but somehow still dancing

Facebook greeted me this morning with a TimeHop memory from 2013.  I remember writing a series of short posts for Myositis Awareness Week, and looking at them again is a bit weird – it’s like a different me, still fairly active and independent, and definitely not worn down by 3 years of being pretty much confined to the house.  My muscles are weaker now than they were then, although there was a time during the drug trial that I did regain a bit of strength and some of these daily tasks became slightly easier.  Now though, I’m noticing a big difference and I can’t quite dress myself independently, certainly can’t shower by myself, need an electric adjustable bed to get me moving in the morning, and I use a trolley/walker around the house downstairs.  Social Services did finally agree to supply an electric toilet riser though.  I could really do with another one for the downstairs loo…….Anyway, for anyone who is interested, here is what I wrote in 2013:

7.15am Wake up facing middle of bed, head has slipped off pillows during the night. Need to turn to other side to switch off alarm. Can’t move. Spend several minutes shuffling hips so that I’m on my back. Now need to lift head onto pillow to complete the turn. Heads are heavy, it’s not happening. Starting to panic. Laying on good arm so can’t push pillow out of bed. Finally summon up strength to roll head onto pillow, then the roll onto left side is relatively easy but we’re not finished yet. Push legs out of bed for leverage and push into sitting position on edge of bed. Alarm now shrieking so turn it off. Need the loo, try to stand up but so exhausted from turning over legs won’t do it. Pile pillows up properly, put head on pillows. Swing one leg into bed – easy. Other leg? Dead weight, takes ages. I’m freezing cold and still need the loo. Happy Tuesday everyone.  

Another day waking up feeling drained, like I’ve done a 10 mile run in my sleep. After the trauma of getting my aching body moving (described yesterday) I manage to get out of bed and head to the bathroom. You have to time it just right, myositis muscles can be a bit unpredictable. Too soon and nothing will happen, too late and – well never mind. Anyway, having progressed through all the toilet seat risers, even the highest one is no good to me now. Occupational therapist recommended a powered toilet riser at the beginning of this year but social services are still haggling with the council over who’s going to pay for it. So I have to manage without sitting down. Great fun with a broken leg! Then into the shower, wash my hair one handed, hanging on with the other so as not to fall. Towels are heavy, so hard to get dry. Leave hair to drip until sitting safely on the bed again and can towel dry. Hair drier is also incredibly heavy, the whole procedure is exhausting and I’ve still got to get dressed. That’s the next story…  

So, what to wear today? Can’t manage zips or buttons so we’re looking at elasticated waistbands – not too elasticated or weak hands can’t pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that don’t look too bad and go on easily so that’s what I live in. Leggings are an option if I’m feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. It’s too much effort to raise arms above shoulder level so t shirts, jumpers etc have to be big and baggy or at least have lots of stretch. Shoes can only be flat (but not too flat) no laces or buckles, and very light weight or they feel like lead weights on my feet. Coats, on rare going-out days, are definitely a 2-man job. Anyway, after a lot of puffing and a few bad words I’m dressed and ready for a nap. Even the simplest tasks are completely exhausting and once you’ve used up your energy for the day you don’t get any more. You have to weigh up everything you need to do in the day and ration your activity so that you don’t burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – it’s a bit like stretching your bank balance to the end of the month, only you’re stretching your energy until the next sleep. And every day is the same. We don’t get days off from this disease. I wish we did.  

At last – showered, dressed and ready for the day. I gather up some washing and put it in a canvas shoulder bag to carry down stairs. Collect up phone, iPad, coffee cup and sit on stairlift.  Oops, forgotten panic alarm pendant. Put everything down, heave self off stairlift and fetch pendant. Back to stairlift and load up again. Downstairs, take washing to kitchen and load washing machine, drop 2 socks and a pair of pants on the floor. Fetch picky-up thing from by front door to retrieve items from floor, spend 10 minutes squeezing Bold 2in1 out of stupid bottle. Half fill kettle (full kettle too heavy to lift) and feed cat and dog. Cat is easy, she has her food on a work surface so dog can’t steal it. Put dog’s breakfast in her dish, put dish in long-handled dustpan and lower to the floor. Clever eh? Make coffee and carry to my electric riser chair in front room. Go to porch to check for post. 3 letters on the mat. Fetch picky-up thing from by washing machine and poke letters around the porch until it becomes apparent that they will have to stay where they are until Colin gets home. Back to kitchen, get bowl of granola for breakfast and take to my chair. Check laptop, phone, iPad, work paraphernalia and crutches all to hand before sitting down. Still working from home while broken leg mends, so that’s me settled for the morning. I’ll work till lunchtime, then this afternoon I’m going on an adventure 🙂  

My afternoon adventure was a trip to the John Radcliffe hospital to see my consultant. The only thing I really wanted to talk to him about was the new drug trial that we’ve heard so much about, and it looks as if it really is going to happen. The big noises are meeting at the end of next week to sort out the details, they don’t know yet what the criteria will be or how many centres will be involved, and they don’t know exactly when it will start. They seemed confident though that it will go ahead, and that’s great news for all IBMers, even if we don’t all get on the trial. At least something is happening after all these years of nothing, and if the drug is proved to work we’ll all get it in the end.  

An adventure in the afternoon isn’t really a good thing. Myositis makes you horribly tired, and by mid afternoon I can hardly keep my eyes open. So an afternoon nap is part of the daily routine and if I time it right I can wake up with enough energy to get through the evening. As long as I don’t try to do anything strenuous of course, like cook dinner or eat it or, heaven forbid, GO OUT!! Anyway, no nap today so when we get back from the hospital I potter about doing a few chores, staggering and dropping things until Colin gets cross and orders me to sit down. How did I become this person? My real self is always busy, loves line dancing, walks the dog, bakes bread, cleans the house, runs upstairs, goes to the gym (admittedly mostly to sit in the jacuzzi), visits friends, goes shopping…… Where did I go? Well, I like to think I’m still here, buried under a layer of myositis that I will escape from one day, like a snake shedding its old skin. The new drug trials are a glimmer of light at the end of a very long tunnel but there’s not going to be a miracle cure, not yet, just a chance that the disease process might slow down, might stop, might even be reversed a bit. You have to have hope, or you’ve got nothing. So I head off to bed on my stairlift, the dog races ahead to stake her claim on half the bed (the middle half). It’s best not to disturb her once she’s settled, or you get a hind paw jabbed in your ticklish spot just as you’re falling asleep. In the morning it will all start again, just the same as today feeling exhausted, achey and weak but with the added bonus of sore muscles from today’s adventure. And if you see me tomorrow you’ll think how well I look, and you might even ask me if I’m feeling better. And I might smile and say thank you, I’m fine. Or I might poke you in the eye, you can’t rely on my good nature to that extent. 

Just to update you on the ‘what to wear’ situation – Pineapple trousers are now beyond my hand strength, and I have resorted to M & S stretchy pull-ons.  No waistband to battle with, you see.  Haven’t worn shoes in a couple of years, I just buy funky Moshulu slippers which are perfectly adequate on the rare occasions I go outdoors.  I can’t get cardigans on any more, and I struggle with tops that get caught up in my trousers when I’m pulling them up.  I’m not a skirt person in any case, but they’re not even an option any more due to bathroom practicalities – hitching up one handed while holding onto support, staying hitched up  whilst using two hands for support when sitting down, and keeping out of the way while undergarments are being reinstated…..  It’s doesn’t work, needless to say.  Same goes for nightdresses and dressing gowns, incidentally.  Just impossible.

And let’s not even consider the ‘getting to the toilet in time’ issues.  No, no, no.  We are DEFINITELY not going there!

 

 

Me again :)

Yeah sorry, I know you were enjoying the peace.  I wrote an awful lot about being on a drug trial.  I thought perhaps I would write a little bit about NOT being on one.

So, to refresh your memory, I have a progressive muscle wasting disease called Inclusion Body Myositis.  The ‘progressive’ bit means that it will get worse.  It is not ‘all in my mind’.  It does not respond to ‘thinking positive’, ‘doing a bit more exercise’ or ‘getting out more’.  And now you know what it isn’t, you may decide to stop reading at this point.  For the less faint-hearted, here is a first-hand account of what it is.

It is a soul-destroying, unrelenting, miserable condition that takes your entire life away and replaces it with a daily grind that never, ever gets any easier.  From the first moment you wake up in the morning and find that you can’t actually move, to the last few seconds before you fall asleep at night exhausted from the effort of getting comfortable, you are pushed to the limits of your strength and endurance by the ‘simple’ (Ha!) daily routine of getting up, getting dressed, eating, toileting, picking up things you’ve dropped, maintaining a sunny smile at all times so as not to upset people, if you see any……… The only ‘safe’ activity i.e. no risk of falling, is sitting in a chair.  It’s a relief when it’s bed time, but that involves a precarious walk to the stair lift which then needs piling up with cushions and towels to make it high enough to get off at the top, and then of course is the devil’s own job to get your bottom onto because it’s too high.  The effort involved in getting off the stairlift, wobbling to the bathroom and back to the bedroom, followed by undressing and the almost insurmountable task of actually getting into bed is exhausting in itself, and coming at a time when you’re already tired, is a huge mental battle.  Finally you’re settled in bed and the more you think about not being able to turn over, the more you absolutely MUST turn over; the more you think about not being able to get out of bed in case you can’t get in again, the more you really, really want to get out– most nights I have a panic attack brought on by feeling trapped, some worse than others, but never conducive to a restful night’s sleep.

So, to help me through my days I have some invaluable pieces of electrical equipment – the stair lift, an adjustable ‘carers’ bed, which means the whole thing rises up in the air as well as head & foot adjustment, my electric toilet seat riser, and MacNish riser units on armchairs in the sitting room and dining room.  The armchairs and the bed plug into battery back-up units so that I’m not stuck if there’s a power cut.  Haven’t been able to install similar back-up for the toiler riser as it is wired directly into the mains, so just have to hope we never have a power cut while I’m on the loo.  The stair lift has a pull cord that will mechanically get it down stairs if there’s no power, but not up.  And of course I have my ever cheerful and willing husband to help with day to day stuff, and my lovely cleaning lady comes once a week to give us a good muck-out.  On good days I can do a bit of ironing or empty the dishwasher (never both) and that is the sum total of my contribution towards housekeeping.

Because everything is so difficult, I live my life in a haze of exhaustion and in a permanent state of anxiety about the next thing I’ve got to do in case I fall.  To the able bodied, a fall is a nuisance and can result in painful and inconvenient injuries.  To us with IBM, a fall can be catastrophic.  We have no strength whatsoever to save ourselves, and go down like a ton of bricks.  Broken bones, torn ligaments, strains and sprains are painful and sap our strength and spirit.  Obviously we can’t get up unassisted, and as the disease progresses we become less and less able to help ourselves while people try to lift us.  Colin says it’s like trying to pick up jelly with a fork.  If we fall forwards, we may not have the strength to lift our heads off the floor to enable us to breathe.  If we fall backwards, we are almost certainly going to hit our heads on something.  Either scenario is potentially life threatening, and although we are sensible and wear pendant alarms to press in the event of a fall, there’s no guarantee that we’ll be able to do that if we fall with our weight pinning down our good arm and of course if we’re knocked unconscious we can’t summon help at all.  Even if we can summon help, it can be a long, painful wait for that help to arrive.  The fear of this happening is utterly paralysing, and the danger is something we are conscious of the whole time we are on our feet.  We don’t know when we’re going to fall, we don’t gracefully topple over or trip and stumble.  Without warning our muscles just give way, as if someone flicked a switch and turned them off, and we’re down before we can do anything about it.  Thinking positive does not stop this from happening.  Our worst fear is having to (gulp) go to hospital.  Hospitals don’t understand us, they don’t seem to have any way of dealing with people who can’t get in and out of bed without help, who can’t use normal toilets and can’t do the physio they think we should be doing.  We hear horror stories of IBM patients put in the bed furthest away from the toilet, with no walking aids and no nurses available to help them.  Their ingenious solution is to put us in adult nappies, which they then don’t have time to change resulting in infections, further loss of mobility and, worst of all, utter loss of dignity.  Even in the best of circumstances, injuries involving long periods of bed rest result in further loss of strength and mobility.  These (and other) what-if scenarios run through our minds whenever we have to summon up the strength and courage to attempt any manoeuvre.  So we don’t do any more that we absolutely have to, and the downward spiral of getting weaker and doing less goes on.

Add to that the grief over the loss of our former lives, and the loss of all the things we thought we would be doing in our retirement years, and factor in the impact this has on our family and friends – the weddings we can’t go to, the grandchildren we can’t look after, the new homes we can’t visit and admire – and you may arrive at the conclusion that our lives serve very little purpose other than to be a miserable nuisance to everyone around us.  I would absolutely agree with that.  But I know so many people with this same disease who lead really active and productive lives using power chairs or scooters, who go everywhere and do everything they want to do, recruiting whatever help they need along the way.  They see no obstacles, only challenges to be overcome, with each success giving them confidence to tackle the next project.  They see the dangers, but refuse to be restricted by them.  Inspiring?  Maybe…..

I saw no reason to go down the wheelchair route – I was trialling a new drug and it was working for me, albeit very slowly.  I had absolute faith that this drug was going to keep me on my feet and would delay the progression of weakness and disability perhaps for years.  It might have done – but the results weren’t good enough for the drug company to keep pouring money into it, and they withdrew it without notice.  All hope for the future I wanted vanished, and I realised that I had only two choices:  to spend the rest of my life physically and mentally unable to leave my house, or to accept my physical limitations, admit that I need a power chair and make the structural changes to my house that will enable me to use one.  The thought of having that much freedom, after years of being confined to base, is absolutely petrifying but other people seem to manage it so perhaps I can as well.  Funding for the power chair has been approved by Social Services, a wheelchair-friendly door is on order and plans are being drawn up for ramps front and rear.  None of this will happen overnight (thank goodness!) so I have a few weeks/months to get my head round the idea.  In the meantime, the daily grind goes on and the truth is that a power chair will do nothing to help with that, it will just give me a few more options for how and where I spend my days.  I can’t help but wonder how things will pan out in the future.  I suppose I’m still hoping for the miracle cure, or at the very least that we’ll have access to BYM338 or a similar drug that will slow the progress of the disease.  A future without that hope would be a pretty bleak place, not one that I would look forward to at all.

That’s all folks!

So, as you will all have heard, the BYM338 trial for sIBM has been suspended.  This bombshell first appeared on Facebook and the American Myositis Forum (TMA) on Tuesday evening.  I had a phone call from one of the trial doctors at Queen Square on Wednesday morning to confirm that with immediate effect there will be no more infusions, although we are expected to keep our next appointment which will become an ‘end of trial’ visit with fasting blood tests and the full gamut of strength and walking tests.  He asked me not to make any public announcements until he’d had chance to speak to each of his trial participants personally, which I though was fair enough, but by the afternoon it was fairly common knowledge throughout the myositis community via postings on Facebook and the discussion forums. 

We knew a couple of months ago that the primary goal of increasing our 6 minute walking distance hadn’t been met, and I’ve said a lot about that already so I won’t go over it again.  There was still the hope that the secondary goals would prove to be successful, improvement in the pinch, grip and quadriceps strength tests, but I’m told they showed no improvement either in any of the treatment groups.  Interestingly, the questionnaires we fill in about our ability to do our daily living activities DID show improvements in the groups that were having some dose of the drug, but no improvements in the placebo group.  So those people on the drug felt that they were doing better, but these improvements were not measurable by any of the tests that have been devised, and are therefore considered irrelevant.

So, since there was nothing that Novartis could show to the FDA in support of an application to license this drug for use in sIBM, they will not be taking this any further.  To be fair, they must be pretty upset about this turn of events, because they have sunk literally £millions in it – the science behind it looked as if it would work, but as I have said before, there is a fundamental flaw in the calculations.  We have a disease that destroys our muscles.  You can probably build new muscle cells with this drug but unless you stop the disease from doing its thing, it will just destroy the new muscle cells too.  Perhaps if they’d blasted us with high doses, they could have out-paced the disease process, but they chose not to do that.  There was a slight suggestion that Novartis may devise a new trial using bigger doses, but we all know how long it takes these things to get off the ground so for now – game over.

So how do we feel about the trial being stopped?  Well, it’s understandable that Novartis can’t keep throwing money at a lost cause.  I’m just angry at the way it’s been done.  It really illustrates how little the drug companies think of us guinea pigs that they gave us no notice, no chance to talk about how we thought we were getting on, no consideration that we might not be getting significantly stronger but some of us weren’t deteriorating as fast as might be expected, no NOTHING – just the bleak notification that we’re not getting any more infusions.  After all the days we’ve given you, all the ridiculously early morning journeys, all the needles stuck in us and all the effort we put into the various tests, thanks a lot Novartis.  Yeah, I know – we all volunteered for it, nobody made us do it.  I’m incredibly angry that 25% of the trial participants only ever got the placebo, yet carried on jumping through every hoop that Novartis presented us with because we all thought the drug was working for some of us and we’d all get the best dose in the end.  I feel we’ve all been cheated.

That’s the bigger picture.  Personally I’m scared.  Regardless of what their results say, I know the drug has been good for me.  I know that before the trial, I struggled to type and was down to using just one finger as the others weren’t strong enough.  I know that when I sat on my stairlift I didn’t bother putting the footplate down because I couldn’t lift my feet onto it, and now I can.  I couldn’t pull plugs out of wall sockets, or ring pulls off drink cans, and I hadn’t been able to open bottles of medicine with child-proof (Steph-proof) caps for about 10 years.  All easy now.  I can breathe when I’m lying down flat, and I don’t have to constantly clear my throat.  My head doesn’t flop back when I look up, and I can shrug my shoulders again – not sure what benefit that is, but there it is anyway.  And the drug doesn’t work?  Yeah right.  Without the drug, I know all the gains I have made will gradually slip away, and the relentless downward slide will begin again.  Not a nice prospect.  I know some will say, quite rightly, that there are new drug trials in the pipeline and more treatments in development.  I know that’s true, but I’m not ready to jump on any new bandwagons just yet.

The only advantages I can see to not having the infusions any more are (a) that I won’t have to get out of bed at 5 am any more to start the horrendous journey into Central London, and (b) the diarrhoea might clear up. 

So Monday is my next scheduled appointment.  They would like me to arrive fasting, ready for blood tests, strength tests, walking tests, ECG, physical exam etc.  They say it will be a long day.  They have no idea how much the day takes out of people with IBM, but we’ve done it on numerous occasions because it was required of us in order to get the drug.  Now we’re not going to get any more drug because they’ve decided it doesn’t work.  So why do they need this extra set of data from us?  What difference will it make?  None to me.  Am I going?  Am I boll*cks.

BYM338 on tour

 

 

A late visit to hospital this month, as I was poorly with an infection for a week followed by a week being even poorlier with a reaction to the antibiotics.  Anyway, finally got there on Friday last week.  Still not much to report – the day went much as usual, with the alarm going off at 5am, and we set off just before 6 o’clock.  Friday traffic seemed much better than Monday’s, so it was an easy journey and we arrived at about 8.30 am.  Since I’ve been feeling so ill, I agreed to Colin wheeling me into the hospital in my wheelchair, which would be fine if only I could get out of the blooming thing.   Sadly, even with the electric riser cushion I wasn’t able to do it so poor Colin not only had to lift me out of the car, but out of the wheelchair too.

I had an early appointment with our new physio lady.  She seems very nice and down-to-earth, admitted she doesn’t know much about IBM yet but looks forward to learning.  I’ve been having a lot of problems with an immobile shoulder, the result of some old injuries, and she gave me some different exercises to help with that.  She also encouraged me to get back to the regular exercise schedule as soon as possible, as obviously that had all gone out of the window while I was feeling ill.  After she had gone, there was an ECG and a couple of questionnaires to complete and then we just had to wait for the drug to arrive. 

The trial doctor popped in to do the questionnaires, and we talked about when Novartis were likely to decide when/if the trial was going ‘open label’.  Her feeling was that the grip and pinch test results, along with the DXA scan data, were likely to show enough improvement for Novartis to be able to proceed with the trial, although it may prolong things if they decide to investigate higher dosages or different timescales.  We all agree that a 6 minute walking test for IBM patients is pretty useless – we’re not natural walkers any more, and are more likely to walk slowly and safely than rush about and risk a fall.  The difficulty is that the people who devise drug trials, although undoubtedly very clever and highly qualified, aren’t medical people – they are scientists.  They have very little contact with real-life patients, and don’t always take all the factors into account in the way that clinical staff – doctors and nurses – would.  I think the premise of this trial, if it was simply intended to make us walk faster, was flawed from the outset.  Anyway, there are many things that Novartis could decide to do at this stage, and there will be a meeting in Switzerland in July to discuss the options.  One very real possibility is that the FDA will say that the results are too insignificant for the project to continue, but given that there is nothing else available for us at present, and any improvement is better than none, I hope they won’t take that view. 

Colin was outside when he saw a courier arrive with a drug box at around 1.15pm.  He thought it might be for me, but he was disappointed when the courier headed off to another part of the hospital.  We carried on waiting…..  Around 2 o’clock, the same courier arrived in our department.  He had been on a complete tour of the hospital looking for the right place to deliver his package.  Pity it never occurred to him to ask at the reception desk.  Anyway, I already had the cannula in ready, so it didn’t take long to get the drug hooked up followed by the glucose flush through, and we were away by about 3 o’clock.  I decided that I’d sat down enough, and walked to the car.  I felt that I handled the slopes better than usual – they usually hurt my knee and slow me down considerably, but Colin said I was quicker than normal.  Possibly the only benefit of spending nearly 2 weeks in bed feeling like death!

We got home just before 6 o’clock – traffic was fairly heavy, and Colin needed to stop off at Oxford Services to stretch his legs.  It’s a lot of driving for him, and central London is so busy and difficult to get through that I know that I wouldn’t even attempt it myself – I’m so timid that I’d still be there now, waving people out in front of me and hesitating at junctions…..  I’m grateful that he puts himself through this for me every month, and hope that it will all be worth it in the end.  As we often say, I might not be much better than I was when we started the trial, but I’m no worse and that, when you have a progressive disease, is a very good thing.

BYM338 – no answers yet

Yesterday I was back at The Leonard Wolfson Research Centre for another infusion of BYM338.  This month the news broke on the internet that the drug trial hasn’t achieved its ‘primary endpoint’ – the expected improvement in walking distance over 6 minutes hasn’t been met.  We don’t know what this means – whether there was some improvement overall but not as much as they’d forecast, or whether nobody has improved at all – we’ll just have to wait until more information is released.  The trial centres haven’t received any information other than that, and they heard that by email on the same day that the financial publications were running the story.  Bit naughty really.

When the news hit the internet, I found it completely unsettling and it made me question everything that I thought and felt about the drug.  In one way though, it was a bit of a relief because I’d wondered why I hadn’t really been able to improve my walking ability and thought perhaps I wasn’t trying hard enough, wasn’t exercising enough, or perhaps my body wasn’t reacting to the drug the way it was supposed to.  There was no need to worry about any of that any more, because obviously it wasn’t just me.  On the other hand though,  it made me wonder whether the other improvements I’d noticed were real or imagined, or whether they were only because of the exercises we’ve been doing.  Then I remembered that some of the trial participants are exercising just as regularly as I am, and not getting any results at all – they just continued to get weaker so they have probably been on the placebo, or a very low dose.   So the drug has to be doing something, doesn’t it?  The thought of the trial being cancelled fills me with horror, partly because I remember how quickly I lost strength when we had a 3 month break in treatment over the winter, and partly because that would mean that the drug won’t ever be licenced for IBM and none of the people who have been waiting for it to be available, encouraged by my progress to hope that they too will benefit one day, will be able to try it for themselves.  That would be so disappointing, to say the least.

The trial investigators have still got data to analyse though – they have got to look at the results of the pinch test, grip test and leg strength tests, as well as the indisputable evidence provided by the DEXA scans (showing any increase in muscle mass quite clearly, if present) and the questionnaires we fill in about what we can and can’t do.  If just one of those data sets shows any sort of improvement at all, then surely it is a worthwhile treatment regardless of the walking results.  After all, many of us can’t walk at all, but these patients would still benefit enormously from stronger breathing or swallowing muscles, stronger and more mobile fingers, hands and arms….  it’s not all about walking is it?

So all we can do is wait and see how it all turns out.  I think relying on the results of the 6 minute walk tests would be ridiculous.  Those of us who have dealt with IBM for several years  are not naturally fast walkers, we’re CAREFUL walkers, and I wasn’t convinced that an increase in strength would necessarily make us walk faster.  I’m wrong about that though, because the current Follistatin clinical trial has reported quite significant increases in the 6 minute walking distance month by month.  Follistatin is a drug injected directly into the muscle and it works only on that particular muscle.  At the moment, trials are being conducted on the quads which are the primary muscles used in walking.  If they wanted to test the drug on any other muscles, they would have to apply for separate approvals for clinical trials on each one, which of course could be quite a long process.

I stand by my opinion that the doses of BYM338 they are giving us are not really strong enough to overcome the effects of a progressive disease.  IBM left to its own devices progresses at about 5% per year.  The Phase 1 trial of BYM338 used a dose of 30mg per kilo of patient’s body weight, and achieved an improvement of 6% (average) on the 6 minute walk test.  The current phase of the trial is using doses of 10mg, 3mg or 1mg per kilo of patient’s body weight so can we really expect that to be enough to make us stronger?  Perhaps the best we can hope for at these doses is that it might slow down progression a bit.  That in itself would be useful.

The drug testing business is an unpredictable one though.  A few years ago we were all devastated when trials of another potential treatment for IBM, Arimoclomol, seemed to come to nothing.  Now researchers have decided that it is worth looking at again, and new larger trials are being prepared.  That drug works directly on the disease itself, altering the way muscle cells react to the destructive effects of IBM and stopping progression in its tracks.  So wouldn’t it be amazing if they could come up with a way to use all these therapies together?  Arimoclomol to stop the disease destroying our muscles.  BYM338 to repair the damage already done prior to diagnosis.  And Follistatin to ‘spot-repair’ the worst areas.

In the meantime, BYM338 trials are continuing.  We’re a little bit premature if we assume the drug has failed, or that it won’t be of use to us.  I personally hope that the investigators will have the common sense to look at the bigger picture, assess what other options we have available at this time (none!) and carry on with the work they have started, perhaps with either (a)  bigger doses, or (b) more realistic expectations.  I will of course update if I hear anything at all from the official sources.

This is just a hasty posting in case anyone is waiting to know whether I learnt anything new about the future of BYM338 yesterday.  I didn’t, sorry.  I will add this months progress stats in the next day or so, when I’ve had chance to get them together