I have nothing particular to say - but I'm going to say it anyway!

After my blog earlier in the week - "Standing up solutions" - I've had an incredible response from people wishing me well with the new wheelchair, and especially from people eager to see a video of me using it.

 

Hopefully, I'll get the new wheelchair sometime in the middle of September and I'll post video's shortly afterwards.

 

I've not done much this week.  Monday was a bank holiday here in the UK - as someone gleefully reminded me, "the last one before Christmas" - so there wasn't much going on.

 

On Tuesday, I went to the Douglas Brunton Centre in the morning and spent 3 hours teaching people how to use the computers.  One of the ladies who has been coming to me for sometime, finished this week.  Its always a shame when someone finishes, but satisfying that I've been able to help them, to the point that they have the confidence to go off and use the computers on their own.  The good thing is that I'll have a new person come along next week, to start teaching.

 

When I got home in the afternoon, I was completely shattered and just got in my armchair and went to sleep.

 

On Wednesday, I had an appointment to see the nurse to dress my big toe.  About 4 weeks ago when my carer came to get me out of bed in the morning, she noticed that I had blood on the big toe of my left foot.  Since then I have been going to have the toe dressed by the nurse at my GP's practice.

 

Having Raynauds, Dermatomyosiitis with Scleraderma overlap, Inclusion Body Myositis, Diabetes, Lymphodema, Lipodermatosclerosis - among others -  and being in a wheelchair means that my circulation is very bad and this means that even relatively minor cuts on my feet are a source for concern, and take ages to clear up.  Although its a bit of a pain to keep having to go down the surgery to get it dressed, it really is much better than leaving it to my carers to look after, and hopefully if it gets infected, the nurses will pick it up very much quicker.

 

The nurses have a new dressing to go directly onto the wound, which looks a little like mustard powder when its sprinkled on, but forms a protective gel over the cut on the toe and should help speed up the healing process.  The nurse uses this and then gets a bit enthusiastic with the bandages, which means that my toes looks far worse now than it actually is.

My heavily bandaged toe! Yes that is only one toe bandaged.

 

Hopefully, when I get the new wheelchair and can stand up on a more regular basis, this will help to improve my circulation, and therefore reduce the time that small wounds like this take to heal.

 

Thursday, I had my physio come for our regular bi-weekly appointment.  This involves her moving my legs and arms, and exercising my joints, and stretching my muscles.  This helps to maintain the range of movement I have, and also helps keep my condition from deteriorating.

 

After an hour of being pulled about, I am worn out.

 

Today I have another appointment to have my toe dressed again.  I wasn't expecting to go but received a text reminder from the practice of an appointment.  I know there is another David Wood who is a patient at the practice, so I just hope it isn't his appointment and I end up having some horrible procedure performed on me!

 

I between times I have been working on something here which at present I don't want to say to much about for now.  However, in doing this work I have been in contact with quite a few fellow Myositis friends here in the UK.  It has been great to get to video talk, on Skype, with people who up to now I have only corresponded with on Facebook.  It has been particularly exciting to have picked the phone up this week and firstly to find myself chatting with Joy Walker, and then only this morning, to chat with Frank Smith.

 

I have also been inspired by the recent posts by Lesley Coleby, about her son, Tom's, bicycle ride from John O'Groats to Lands End.  It is a fantastic effort by a young man showing support for his mother in raising funds for a Charity here in the UK.  Not only is he putting in a massive physical effort but he has already raised a fantastic sum of money. 

 

Lesley, you should be very proud of your son, and Tom, thank you for your incredible effort.

 

This has got me thinking, what could I do to raise money?  Being in a wheelchair, and not having great movement or strength, I'm struggling to come up with any ideas, but wonder if any of you could think of something that I might be able to do to raise funds.

 

Before any comedians suggest pie eating - that would obviously be too easy and perhaps not ideal given my already expanding waste line.

 

So there you are.  I said I had nothing particular to say, but seemed to be able to string it out quite a bit.

 

I'm out at various appointments Monday, Tuesday and Wednesday next week, so I doubt that I'll be blogging again until the end of next week.  So in the meantime look after yourselves.

Standing up solutions

If you have been a regular reader of my blog - and I'm still amazed by the number of people reading this - you will be familiar with my trips to the National Hospital for Neurology and Neurosurgery (NHNN), to see the physiotherapists and their efforts to get me standing.

 

My last trip up there wasn't very successful, as for some reason I didn't seem able to stand very well, and the changes I asked to be made to how we used the standing frame only highlighted the fact that using this piece of equipment at home wasn't going to be an option.

 

At NHNN they had suggested that we try using a tilt table to see how I would get along with this.  After doing some research on the internet I'm not sure that this is going to be the solution.

 

It seems that with both the standing frame and the tilt table, I would need some input from at least one other person to help me use them.  As I only have Mum with me here full-time, I ideally I want a solution where I can use a piece of equipment with as little input from anyone else.

 

You may remember sometime back that I had a demonstration of a stand up powered wheelchair called a Levo C3.  This had gone really well.  Standing it had been easy.  It was comfortable as a wheelchair, and apart from the transfer in and out of the chair, which I would need help with anyway, I could use it on my own.

 

Levo C3 stand up powered wheelchair

 



There were however two problems with this chair. 

 

Firstly, the cost.  I was quoted a price in excess of £14,000 for a new wheelchair, like the one demonstrated to me.  Although I could have spread this cost interest free over 5 years, it still seems an excessive amount.

 

The other problem was that after looking into the Levo C3 on the internet, there were questions raised about its reliability.  One guy had said that after purchasing a new Levo C3 he had needed to return this 9 times in the first 12 months to sort out problems.  There was a suggestion from one supplier of wheelchairs, that the stand up wheelchairs were best used only indoors, as the vibrations of running them over uneven ground could lead to bits becoming loose and the chair not working.

 

It sounded like buying an expensive car, but not being able to use it on the road.

 

After having thought about things for a bit, I started to look at alternative to the Levo C3, to see if there was a cheaper option that could do the same thing. 

 

I found one called The Genie, which is made by a company called EasyCare Products Ltd.  This looked promising, in that it did much the same as the Levo C3, but the retail price started at £6,500.  I tried calling the telephone number shown on the website, but it just rang and rang. 

 

Eventually I found out that the company was a one man band, who made each chair specifically to order, but that he had recently been taken seriously ill and the company was in liquidation.  So if you are thinking of buying a wheelchair from this company or a second hand chair from them, I would strongly advise against it, as parts will not be available should things go wrong.

 

Any other alternative makes of stand up wheelchairs, had a starting price about the same as the Levo C3.

 

So I then started to look at the possibility of a second hand chair.  Straightaway I found a Levo C3 about 5 years old being sold on eBay for a little under £2,000.  However, the seller was located quite some distance away, and so getting to see it, let alone collecting it, was going to be a problem.

 

I then started ringing round locally to suppliers of wheelchairs to see if they would collect the chair for me, and then service it and refurbish any bits that needed replacing.   Alternatively, I asked if the ever had any second hand stand up wheelchairs for sale.  In every case, they would happily collect it but the could not service or refurbish it as they didn't deal withstand up wheelchair models.  Most of them said they simply could not get the parts.

 

Eventually I rang up Gerald Simonds Healthcare Ltd, the company who had demonstrated the Levo C3 to me, to ask if they had access to any second hand chairs, or if they could refurbish and service a second hand chair for me.  The person who answered the phone advised that they did not deal with second hand chairs.

 

I seemed to be hitting a brick wall every way I turned.  Then about 30 minutes after getting off the phone from Gerald Simonds Healthcare Ltd, Sean, who had come out to demonstrate the Levo C3 to me called back.

 

He asked if I would be interested in buying the chair which had been demonstrated to me.  He advised that it had a few scuff marks on the paint work, but it was only a couple of years old and had actually only done about 20 miles in all that time.  He agreed that before supplying the chair to me they would give it a full service, and the chair would come with a 6 month warranty.  They would also do annual services - but at a cost.

 

We discussed the cost, and after a bit of haggling, agreed on a price of £5,500.  On Friday, I paid a deposit, and Sean, thinks that I should get the chair about the 3rd week of September.

 

Although its still quite a cost, it seems like the best deal that I'm going to get.  I know I can use this chair with the minimum of help from another person, and if I only use this indoors, and keep my other chair for going out, its much more justifiable at this sort of cost.

 

Standing up is important to me.  Not just because of the benefits to my health, but also because I just feel better being able to stand.  Having been given the opportunity to stand at NHNN, it would seem a waste to stop once I can no longer go there.  By buying the Levo C3, although its still quite an expense, it allows me to be able to continue to stand on a more regular basis.

 

I can't wait to get it, and watch out for my next video of me standing up in it.

Joost van der Westhuizen

For those of you who aren't rugby fans, you probably don't recognise the name, Joost van der Westhuizen.  If you're a South African, you certainly will.

 

In November 1993, van der Westhuizen made his debut as a Springbok, playing at scrum-half, in Buenos Aires, when South Africa took on Argentina, and the international career of one of Rugby's greatest ever players began.

 

In 1995, he was part of the South African team that won the Rugby World Cup playing on home soil.   In a thrilling final against New Zealand, played in front of President Nelson Mandela, van der Westhuizen made a try saving tackle on the All Blacks juggernaut that was Jonah Lomu, after he had bulldozed his way through most of the Springboks team.  People still talk to him about "that tackle".

 

In 1997, he was a member of the South African team beaten by the British and Irish Lions, and was one of the players who fell for an outrageous dummy, by Matt Dawson, the Lions scrum-half, who then went over in the corner to score a crucial try and seal the series.

 

In 1999, van der Westhuizen, was the captain of the Springboks at the Rugby World Cup, where they narrowly lost the final to Australia.

 

When he eventually played his final game in Melbourne,  in 2003, against New Zealand, he had done everything, and won virtually everything, in the game.  He had 89 international caps for South Africa, a record for a South African player that still stands, and had scored a record 38 international tries.

 

He had speed, strength, skill and an incredible will to win.  He was the sort of player you would pay good money to see, but hated seeing rip through your team.

 

In a country that is Rugby mad, van der Westhuizen, was second only to God - but only just.

 

In 2008, he noticed some weakness in his left arm, and assumed it was an old Rugby injury.  Later that year it was obvious, it was more that that, and after seeing his personal doctor, was diagnosed, in 2011, with amyotrophic lateral sclerosis, one of the most common forms of motor neurone disease.

 

Also, in 2008, he suffered a suspected heart attack, and was then involved in a sex and drugs scandal, that cost him his job as a TV sports pundit, and his marriage.  Living a high-speed life as a reaction to his deteriorating health, actually gave him the insight to see what was important and what really mattered.

 

On diagnosis, he was given between two and five years to live.  His body, once his greatest asset, is now failing him.  His speech is slurred and his body is disobedient.  He is now confined to a wheelchair.  But his mind is still as sharp as ever.

 

Joost van der Westhuizen - as a Springbok, and as he is today

 



He now spends his time with his two children, and raising awareness of Motor Neurone disease, through his J9 Foundation. 

 

He has great memories of his career and acknowledges that he receives great support from the Rugby community, with many international team mates and opponents.  Later this year he hopes to travel to the UK, to watch the Springboks take on Wales and Scotland, in the autumn internationals.

 

This is a man I greatly admired for his ability on a Rugby pitch.  It is sad to read about someone who has been so active, so skillful, so brilliant, who is then brought down by the frailties of his own body, the one thing that he probably thought he could always rely on.

 

He admits to many highs and many lows, but having come through these he's is able to see life in a different light, and to focus on what's important - his children, his faith and his work with his foundation.

 

He is now 42. 

My Week - Part 2

Just for Simon, who complained that my blog yesterday was to long and should have been snappier, and to show that I'll take on board your comments about my blog, here's a Twitter style version.

 

"Got up. Did stuff. Went to bed.

 

Repeat as necessary."

 

Hope you like that better, Mr Marr, but can't help feeling that its missing that personal feel to it.

My Week

I thought I'd do something a bit different today with my blog, by telling you all about my week, and giving you some historical events that have happened on these days in the past..

 

Saturday 10th August

 

In 2003, Britain has its hottest day since records began, with the mercury rising to 38.1 C in Gravesend, Kent.

 

First thing my friend, Paul, comes over and takes Mum out to get the weekly shopping.  Paul has been doing this for about 8 months, and it is a great help.

 

Saturday was always going to be a difficult day, and one I wasn't looking forward to as my sister, Jane, and her boyfriend, were coming to visit.

 

We have a difficult relationship.  I don't like the way she treats Mum, and think that she could do much more to help her out.  She acts as if there isn't much wrong with me, and that I expect Mum to do to much for me.  I always feel that I have to watch what I say, as the possibility of an argument is never far away.

 

Jane was involved in a car accident about 25 years ago, and suffered some fairly major injuries to her neck and back, as a result.  She was entirely blameless for the accident, but received little compensation, due to the tactics employed by the other parties Insurance Company, an ineffective legal team representing her, and the fact that she could not face being in court, and being bullied by barristers.  This all had a huge impact on her life and Mum has provided loads of support to her, both physically and emotionally, as well as financially.  Jane doesn't acknowledge the support she had from Mum, and if asked I suspect she would deny it ever happened.

 

The accident meant she had to give up a promising career.  She has suffered bouts of depression, although she would never acknowledge this, and mentally, I think she has never really moved on from that event.

 

However, since, in the last couple of years, she has found herself a boyfriend - who is a complete drip - she is a much happier person, although not necessarily a nicer person.

 

They arrived about 12.00 pm, which was an hour later than they had said they would.

 

Following lunch, they took Mum out to a local garden centre to buy some things we needed for the garden, and when they came back they helped do a few jobs round the garden.

 

After that, they had a coffee and were gone by 4.15 pm.  I always get the feeling that they stay for as shorter time as possible, and although I'm relieved to see them go, I feel sorry for Mum as she would like to see Jane more, and Jane could do more to help her.

 

Anyway, I get to watch Mo Farah win the 10,000m race at the World Athletics Championships in Moscow, and then relax for the rest of the day.

 

We usually eat our main meal of the day about 6.00 pm but because we had visitors, we had eaten this at lunchtime.  This always throws me out, and I never feel quite right not having a proper dinner in the evening.

 

Sunday 11th August

 

In 1968, the last steam passenger service runs on British railways, hauled by the locomotive 'Oliver Cromwell'.

 

Sunday was a nice relaxing day, spent watching the Ashes Test match and the athletics.  Nothing special happened but it was a peaceful day.

 

Monday 12th August

 

In 1949, the Fourth Geneva Convention is signed, providing for the protection of civilians in war.

 

In 1981, IBM announces the introduction of the first personal computer, or PC.

 

Nothing much happened Monday. 

 

I had to book transport to take me to a hospital appointment in a couple of weeks, and I got this sort out early on.

 

After spending sometime on the computer, checking my emails and Facebook, I watched the end of the Ashes Test - another great win for England - and then some more athletics.

 

Tuesday 13th August

 

In 1961, the East German government closes the border with West Berlin and begins building a dividing wall.

 

In 1966, China announces the start of the Cultural Revolution, which will result in the deaths of thousands.

 

On a Tuesday morning I go to the Douglas Brunton Centre, a centre for the retired, where I volunteer giving lessons on how to use computers to the over 55's.  It is good fun, and I get to meet some interesting people, and hopefully help them learn how to use the internet.  It also gives Mum, one morning a week, were she knows I'll be out and she can do what she likes without having to think about me.

 

So I am up early.  Augusta, the carer who is coming to me now in the mornings arrives at 6.00 am.  I really like getting up early, as I hate being in bed too long, as I cannot move about in bed, and also I hate getting up later and finding that half the day has gone before I get to do anything.

 

Once I'm up and had breakfast, the Dial-a-Ride bus, a charity run local minibus service for taking elderly and disabled people round the local area, picks me up at 9.00 am.

 

I see my first person at 10.00 am, so while I wait for them to arrive, I have a cup of tea, and check my emails.  I have 3, one hour sessions, where I give one-to-one tuition.  I teach people only what they want to know about, and hopefully in about 8 weeks can have most people to a point where they are confident enough to be able to do the things they want for themselves.

 

The morning usually passes really quickly and about 1.30 pm, I'm picked up and brought home.

 

After a bit of lunch, I spend sometime checking Facebook, and then get in my armchair and watch the athletics.

 

In the evening we have some confusion with my carers, which I wrote about in my last blog.

 

Wednesday 14th August

 

In 1834, the Poor Law Amendment Act is passed, introducing 'workhouses' for the healthy poor.

 

Again, I'm up early, and after showering, getting dressed and having breakfast, I get on my computer and check my emails and Facebook. 

 

I have a set routine of things I do on my computer, first thing most mornings.  Once I've logged in, I open a couple of Excel spreadsheets, which I use to track my bank account and credit cards, and then check these against my online bank accounts and credit card accounts.  This way I know what I've spent and what has yet to come out of my account or be debited against my credit cards.  Although I am lucky that currently I don't have a lot of the financial pressures that many disabled people have, I am very aware of the need to be on top of my spending and finances, so that these don't become a problem.

 

After I've looked at my accounts, I check my emails, before going onto the BBC website, where I look at the sports page and then at the news. This is so much better than buying a newspaper.  After that its onto Facebook, and checking out the various pages on there and any activity that might have happened since I was last on.  I will usually check out the Myositis Support Group website and check if there has been any activity on the "community pages", and if there is anything to respond to.

 

I have an appointment at 1.15 pm with the nurse at my doctors surgery, to redo the dressing on my big toe.  I get ready and set off down there at about 12.55 pm.  I arrive early - I hate being late for appointments - and after checking in with reception, wait to be called.  There is a baby clinic going on, so the waiting room is a symphony of screaming children, either going in, or coming out, from having their injections.

 

I don't have to wait long before I'm called in.  The nurse re-does the dressing and I have to make another appointment on the way out for early next week, to have the dressing done again.

 

When I get home, Mum has a visitor.  Rita, who has been brought down by her cousin, Michael, worked with Mum as a tailor at Hartnell's, in London in the early 50's, and they have remained friends since.  I have known Rita all my life.

 

Mum and Rita spend a good afternoon together, chatting and catching up.

 

After some tea and sandwiches, Rita, and her chauffeur, Michael, leave about 6.30 pm.  We decide that although we haven't had a proper dinner, neither of us really fancy a big meal, so Mum makes some more sandwiches and a cup of tea.

 

I find having people over and sitting talking, very tiring.  Although I'm not doing much, afternoons like this really wear me out.

 

Margaret, my carer, come at about 10.20 pm, which is early for her, and puts me to bed.  I'm glad she is early as I'm feeling tired and ready for bed.

 

Thursday 15th August

 

In 1867, the Representation of the People Act (1867) doubles the number of British men able to vote.

 

In 1945, The Allies officially celebrate Victory over Japan Day, and the end of World War Two.

 

In 1947, India gains independence from Britain, having been partitioned into India and Pakistan.

 

This morning I have my Physiotherapist coming at 9.30 am.   Liz has been coining to me for almost 3 years, and we usually have a 1 hour session, every two weeks on a Friday.  However, with school holidays and my appointments, we haven't seen each other for about 6 weeks, and I feel like I'm really in need of a good stretch and having my legs and arms moved about a bit more that I can do. 

 

She has come on a Thursday because tomorrow she is going away for a week.

 

After a good hours workout, I have a coffee, and then onto my computer.  I spend sometime researching more about stand up powered wheelchairs, standing frames and other alternatives.  I make a few phone calls and hopefully I'm finding a workable solution, but I don't want to say to much about that yet.

 

After lunch, I print off a few documents I need for a meeting of the local Patient Participation Group (PPG) I have on Friday, and the chase the minutes from the last meeting.   About 3.00 pm, exhausted from my session in the morning, I get in my armchair, turn on the athletics and fall asleep.

 

After dinner, and getting back into my armchair, the secretary from the PPG rings to say she has lost her notes from the last group meeting and hasn't done the minutes. Also she won't be able to come to tomorrows meeting.

 

I spend the rest of the evening watching TV.  Margaret comes about 11.50 pm.  She apologises for being so late, but she had gone to one of her clients, to put her to bed, but had been unable to get her oxygen working properly.  It had taken her over an hour to get it working.

 

Friday 16th August

 

In 1819, Troops charge a political meeting in Manchester, killing 11 and injuring 400 in the 'Peterloo Massacre'

 

In 1896, Gold is discovered near the Klondike River in the Yukon Territory of Canada, sparking a gold rush.

 

I'm up early again, and after breakfast, I put together a set of minutes for my meeting this morning, from memory.  When I was working I had a really good memory and very rarely took notes during meetings, as I could remember what had happened, and who had said or agreed what.  I still try to do that as a way of trying to keep my brain sharp.  It really annoys me when I find I forget things now, as I never would have done in the past, and like to think I should be able to maintain that mental sharpness.

 

The meeting is at 10.00 am at the local surgery.  The PPG is basically a patient group, who are active within the medical practice, in addressing questions and concerns from patients, helping the practice develop services and arranging educational events. We have a committee of 8 patients, and are supported by the practice manager and one of the partners, when ever possible.  I am the Chairman of the PPG.

 

We are currently arranging an educational event on Hypertension, which will be presented by onE of the practices doctors.  We discuss the details of this, and how we are going to advertise the event.  This is all pretty much sorted and we are just finalising details.

 

We then move onto the groups AGM, which will be held in early October.  I hate this event as potentially I have to address a large group of people, something I'm not very good at.  However, last year only one patient came along, in addition to the committee, so it wasn't as bad as I'd expected.  We are looking at ways of getting more people along, although secretly, I'd be quite happy if no one turns up.

 

The meeting finishes at 10.50 am.

 

After checking out some bits on my computer, and sending some emails arising from this mornings meeting, I have lunch and the settle down to the athletics about 3.00 pm, and a good sleep.

 

And that is pretty much my week.

Confusion at the Care Agency

In my last blog, I wrote about my carers and how poorly run the Agency that supplies them is, and how this can impact on people.  Well last night was a classic example of them not knowing their arse from their elbow.

 

I have three calls a day. 

 

The first is early in the morning to help me get up out of bed, go to the toilet, then shower and dry, before helping me dress and put on my compression stockings.

 

The second call is at midday, when the carer comes and helps me to the toilet.

 

With both of these calls, the carer, should get my breakfast and lunch, but as Mum is here, she gets my meals for me, as she would be doing her own anyway.

 

In the evening I originally had a call to put me to bed.  However, I found that carers would regularly turn up between 7.30 and 8.30 pm to put me to bed, which is far to early.  We then changed the call so a carer would come at 7.00 pm, to take me to the toilet, get me ready for bed and then put me in my armchair, where I could watch TV, and then Mum would put me to bed later on.

However since Mum's episode where she had to go to hospital, just over a month ago, she has been to tired and unwell to put me to bed.  So we asked the agency if a carer could come later in the evening to put me to bed.  The carer who was doing my evening call at the time, Shola, said she could not come after 8.30 pm, which was too early to go to bed, so the Agency arranged for Margaret, my regular carer, to come at the end of her evening round.  This means I get put to bed between 10.30 and 11.30 pm which suits me much better.

 

Well last night, I had just finished dinner, and was watching the World Athletics Championship on TV, when the door bell rang at about 6.50 pm.

 

Mum answered the door to find a carer stood there, who had come to put me to bed!

 

I had meet the girl, Marilyn, before.  I explained that I did not want to go to bed at that time and that my normal call, was by Margaret much later.  She said she had just been asked to cover the call, but had been told to be here at 7.00 pm.

 

Now usually, if Margaret is going to be off, she will let me know about a week before hand, and as she had left the night before, she had clearly said to me, "See you tomorrow".

 

Marilyn, had come out to me on the bus, as her car is in the garage, and it wasn't possible for her to come out to me later.  Plus she had just walked up the road from the bus stop, in the pouring rain, and was already soaked.

 

We chatted about the problem, for a bit, and I then decided that I should call the "on-call" service, to tell them of the problem, and to ask them to send out a carer to me later on.

 

When I got through to the number, I spoke to a girl named Nicola.  I explained the problem to her and asked if Margaret was not working and if my carers were changing, why I hadn't been told.

 

Nicola didn't know whether Margaret was working or not.  She also couldn't explain why I had not been told about the change.  She then looked at her rota for the rest of the week, and said that Marilyn was due to come to me tomorrow and the Shola would be coming to me on Thursday and Friday.  I asked if this was the case, whether Margaret had been taken away from me.  Her response was, "Oh, it looks like it".

 

At this point I hit the roof.  Trying desperately to stay calm - put failing - I explained that I had never been consulted about any of these changes.  That 7.00 pm was far too early to expect me to go to bed, and if they wanted to change the time of the call they should have talked to me about it first.

I told Nicola, that she needed to find out what was happening, and get a carer to come out to me later on.  Also she should contact her Manager - a useless idiot if ever there was one - and get him to explain to me why I had not been told about any of these changes.  I then rang off.

 

I got Marilyn to write up the care book, with what had happened, and signed her timesheet, so at least she would get paid for coming out - the least I could do after her having to sit on the bus and then get soaked walking up the road.

 

About 20 minutes later, Margaret phoned to say, not to worry she would be seeing me later as normal, and she was working.

 

About 10 minutes after that, Nicola rang back to say Margaret was coming out.  I apologised if I had shouted at her or been rude, and she said I had been quite reasonable under the circumstances.

 

Half an hour later, Olo, one of the guys that works in the office, rang to apologise for the confusion, and to say that it had all now been sorted out, and Margaret was coming to me.  (I took from this that I wasn't going to get a call from the manager).

Having got me all worked up and annoyed - and having missed the end on the Women's Pole Vault final - I sat down in my armchair to watch TV.

 

About 11.25 pm, Margaret let herself in. 

 

She told me that the problem was that when my evening call changed from Shola at 7.00 pm to Margaret after 10.30 pm, the office had never taken me off Shola's rota.  Therefore when Shola was taking a couple of days off, they covered the call with another carer.  But if they had phoned me to tell me about the change I could have pointed out their mistake, and Marilyn wouldn't need to have come out.

 

I told Margaret, that Marilyn had come out on the bus and had got soaked, getting here, and that I had signed her timesheet.  She said that she would get paid, but as it was the Agencies mistake they will have to pay for it.

 

So this is a good example of how a simple mistake throws the Agency into confusion.  They didn't seem to know who should be working, or was working, and therefore who Marilyn was covering for.

Chaos rules!

Changes to my carers and another piece of equipment

Its almost five years since I came out of hospital and needed carers to help me at home.

 

When I was first told that I would need carers I thought it would only be until I adjusted to being at home.  I was also very nervous about who would come and how I would be treated, as you hear so many negative reports about carers in the media.

 

From the very start I was lucky.  On the first day home, a girl called Jane, came to me and we got on straightaway.  Jane came to me for almost two and a half years, on and off, and we still remain in contact today.  Sadly, she no longer works as a carer but is now at University doing a pharmacology degree, after which she intends to return to her native Uganda, and start a chain of pharmacies.

 

Over the period of Jane coming, she was supported by a number of other people.  Mary, was Jane's friend who had come over from Uganda with her, and she would come at odd times. Natalya, was a lovely little girl, who was pregnant when she first came to me, and she still comes occasionally, and she is always giggling and good fun. 

 

For about 6 to 8 months a lad called Jason, came to me in the mornings.  Jason is about 6 foot and probably a good 17 stone plus, and was in his early 20's when he came.  Although he was such a big lad, he was very gentle and caring.  He would catch the first bus from his home every morning to be here for 6.00 am to get me up.  We had a common interest in sport, and especially in Crystal Palace FC, so we would spend our mornings chatting about the sport from the day before. 

 

However, there was one girl, who wasn't so good.  Her name was Jackie, and she was supposed to come to me to get me up.  The call should have been about 7.00 am but her timing was very erratic.  It was nothing for her to turn up at anytime from 7.00 to 9.30 am, usually without any real excuse.  The only day you could rely on her being on time was a Sunday, when she wanted to get her round finished so she could attend church.  Every Sunday, she would be here at 7.00 on the dot.

 

But the worst thing about Jackie, was that you never knew what she was going to be like from day to day.  She was never what I would call a happy girl, but some days you could barely get a word out of her.

 

She only lasted about 3 weeks, and then she decided she didn't want to come any more.  I could have cheered when she told me.

 

Although in the main, the boys and girls who came to me were very good, the agency that supplied them had lots of problems.  The administration was very poor.  They never really seemed to know which carers were doing what or when.  They would make appointments to come out and conduct reviews, and then not turn up, and seem surprised when I phoned and asked what was happening.  But worst was the fact that they never told you if there was a problem with a carer coming, or is a carer was off, who was coming in their place.

 

However, things really came to a head, when the owner of the agency was arrested and charged with raping two of the young girls.  During the court case that followed, it became clear that he was bring girls over from Africa, and then using them to work as carers for the agency, without any training.  He would provide accommodation, but basically everything they earned, he would keep to pay for this.  And then he was sexually abusing the girls.

 

The agency folded as soon as this all started to come out.

 

For a few days another, local, agency was employed to send carers, and although they were very nice and professional, they did not have any carers who could come to me before 9.00 am in the morning.

 

I was then changed to the agency that currently supplies my carers.  This was in January 2011.

 

Margaret has been coming to me pretty much constantly since that date, although there may be some other girls covering the odd call or the very occasional periods when Margaret is taking time off.

 

The great advantage of having a regular carer, is that you get real consistency of care.  We both know what we are doing and how we are going to do it, without having to say anything to each other.  We can have a chat, and a laugh, whilst we just get on with the job in hand, without having to think about it.  We have built up a good personal relationship, and Margaret understands why and how I want things done, and is prepared to spend time allowing me to do things on my own, because she knows that this is the best thing for me.

 

I still have other carers come to me and again they are very good.

 

However, I did have one lady come to me for a few days, first thing.  Her name was Debbie, and she must have been in her early 60's.  She was a nightmare.

 

Being a carer is a physical job, and you need to be fit and strong.  Margaret is very strong, and when she has to help move me, like getting me out of bed, she does it very easily.  With Debbie, it was almost too much.

 

She smoked and her clothes and breathe reeked of it.  Other carers who smoke, come in chewing gum, so the smell isn't on their breathe but Debbie would pull up in her car, smoking, and the come straight in, smelling of cigarettes.

 

She couldn't multi-task.  If you were having a conversation, if Debbie was going to say something, she would stop working to talk, and then continue with her work when she had finished.  This meant that what should have been a 45 minute morning call to get me up, showered, dried and dressed, ended up taking over an hour.

 

But the final straw came when she was going to pull my trousers up, and grabbed hold of the waist band at the back, and yanked them up, and at the same time dragged the engagement ring up the skin on my bottom.  This ring had a nice big stone in it, which not only ripped her glove, but also ripped the skin on my bottom.

 

She never came back.

 

Sadly, again, although the girls who come out are very good, the agency and how it treats both its staff and clients is very poor.  I am very rarely told if there are going to be changes to my carers, or if there is a problem with a carer coming.  If you complain, you get the impression they aren't really interested and frankly it doesn't change anything.

 

But its worth putting up with the agency, to have such a good carer as Margaret.

 

However, a couple of things recently have really annoyed me. 

 

A few weeks ago, Margaret was off on a Monday morning.  She had said to me she wanted to be off but wasn't sure, but that the office would inform me.  They never did.

 

So at 6.00 am on Monday, I heard a key in the door, and someone let themselves in.  Next thing I know, a girl who I had never meet before is stood by my bed, telling me she is my carer for the morning.

 

When I spoke to the office, they couldn't see the problem.  So I explained that a complete stranger had just let themselves into my home, and had come to stand by my bed.  How would they like that happening to them or to a member of their family.

 

Then one of the girls from the office phoned up about coming out to conduct a review.  Rather than asking when would be convenient, she told me she would be coming out the next day.  As it happened I was going to be out, so I told her I would not be there.  This seemed to confuse her, and she said she would call back, but has never done so.

 

But what has really annoyed me recently, is that last Sunday, the office phoned me to tell me that Margaret will no longer be coming to me in the mornings.  There is no thought that she has been coming for over two years and that I might not be happy about losing Margaret, its just that they want to re-organise some of the rounds.  I can adjust quite easily, and in fact the girl coming on the week day mornings, Augusta, I know and am quite happy with.  But some of the older clients, particularly those with conditions like Dementia, will be really upset with the change.  For them consistency of care is really vital, and Margaret is such a good carer that she will be really missed by these people.

 

To me it shows the lack of consideration and respect, that the agency has for its clients.  They don't think about their clients needs or dignity, its all about what is best for them, in the office.  All to often this is the attitude taken by agencies.

 

Rant over.

 

Yesterday, I discovered another piece of equipment that I use, which I had missed from my previous blogs about equipment.

 

I got up yesterday, and found that my big toe on my left foot was bleeding - God only knows what I must have been doing in the night.  I went and got it dressed by the nurse at my local surgery and was advised to keep it dry.

 

So in order to keep it dry I use a Limbo Waterproof Protection sleeve.  These are available to go over wounds, dressing or casts, on legs and arms - but probably not heads - so that you can still shower, and even bath, without getting the wound or dressing wet.

 

Limbo Waterproof Protection

 

 

These come in various sizes depending on the size of the wearer and there are even sizes of children.

 

They are very effective, and when I was having pressure bandages on both of my legs for about a 10 week period, it meant I could still have a shower, knowing that I wasn't going to get the bandages wet.



A disappointing day out

From previous blogs, you will have read about my efforts to stand using a standing frame at the National Hospital for Neurology and Neurosurgery (NHNN), in Queens Square, London, and the really brave ones amongst you will have watched my video's of these efforts.  You may also have read about me looking into getting a stand up powered wheelchair.

 

Yesterday, I had another appointment at NHNN to see the physiotherapy team, with a view to continuing these efforts to stand.  I was hoping to make some adaptations to how I had stood previously in order to see if doing this would make a difference to how I could use a standing frame, if I had one at home.

 

The day started at 6.00 am, when Augusta, my new carer - I'll tell you about that later in the week - came and got me up.  Having showered and dressed, had breakfast and had my pills, I was ready to be picked by the hospital transport by 7.00 am.  They duly arrived about 7.15 am.

 

Once I was strapped in the driver advised me that we needed to pick up two other patients on the way, but as my appointment wasn't until 10.00 am, we had plenty of time to get there.

 

The first patient we had to collect, was in New Addington, which isn't that far away from where I live, but getting there usually means going through Croydon, and then back out.  However, this morning the driver decided we would take a more scenic route, and go round Croydon, using some country lanes.

 

This made a very nice change as I don't often get to go out this way.  The first part of the route was similar to one I used to take, when I was driving, to go to a supermarket, that was a bit quieter than the ones really local to me.

 

However, we were going down one of the lanes, just past a golf club where I used to occasionally play, when we came to a sign stating that the road ahead was closed.  We had to reverse back to the entrance of the golf club and then turn round, and take another route.

 

We got to the first patients house and got him on board, and set off to collect the other patient, who lives in Southwark, which is just south of the River Thames.

 

On the way the driver used a combination of his sat-nav and local knowledge, to try to avoid traffic.  However, at one point the traffic came to a stand still due to an accident up ahead, and we had to turn round and find another route, and then at another point, we went down a road, and came across another "road closed" sign.

 

When we were almost at the home of the patient, the driver pointed out that he could see their house, along an alleyway, but that the turning up ahead to get him there was blocked off by workmen.  So he then had to go round in a huge circle to get to another entrance, to where her house is.

 

We eventually picked her up at about 9.00 am.  She was very agitated, as she thought that the transport would not get her to the hospital on time - for 10.00 am - and it was her first appointment there and she didn't want to be late.  I was able to reassure her that we wouldn't take too long to get there and that in any event they would see you if you arrived later, if you were using the hospital transport.  This seemed to calm her down, and we actually got to the hospital about 9.25 am, which gave her plenty of time to get to her appointment.

 

On the way into the hospital, I meet Liz Dewar.  She was out of her regular physiotherapist uniform, and I almost didn't recognised her.  She said that she was in meetings most of the morning, so was unlikely to be able to come along to my session this morning.

 

I went off to find a toilet - after two and a quarter hours in the ambulance, I was bursting - before going and booking in at the physiotherapy department.

 

Rebecca, who I had previously seen, has left NHHN, as part of the regular rotation of staff that happens with Occupational Therapists and Physiotherapists.  This meant that I was seeing Mark, who had just started at NHNN, as part of this rotation.

 

We started off with a quick chat about what I had been doing on previous visits to NHNN, and what progress I had made.  I told him about the demonstration of the stand up wheelchair, and about my reservations regarding these.  I suggested that if we could try the standing frame, if we could adapt how we had used this previously, in order to see if it would be possible for me to use one at home.

 

Mark, went and made sure that the standing frame was free for us to use, and also made sure that there was someone else to help us use it.

 

The things I wanted to try out where to see if I could rise from my wheelchair to a standing position, and to see if by raising the table at the front of the standing frame, if this would help me to stand upright more independently. 

 

Standing Frame - similar to the one used at NHNN

 





We first tried standing, using the standing frame, from sitting in my wheelchair.  I always thought that this would be a long shot, as previously I had been standing from the side of the physiotherapy plinth, which could be raised up so that the start position for any stand was much higher, and my knees were less bent, and my bottom was very much above my knees.  However in the wheelchair, my knees are bent less than 90 degrees, and my bottom was below my knees.

 

After a couple of tries, it was apparent to us all that I would not be able to stand from the wheelchair.

 

I then transferred onto the physiotherapy plinth, and the standing frame was set up in front of me.  Once I was fully strapped in, and the table at the front had been raised, we started to stand.  The first time, I got half up, but one of the knee blocks was in the wrong position and was pushing into my knee cap.  So I was lowered down and the knee block was adjusted.

 

On the second attempt, I got myself fully upright, but even with the table raised, was unable to stop myself from slumping forward.  However, the whole stand was very much, more hard work than it had ever been in the past, and even having got myself up and with my legs straight, it was still very difficult to maintain that position.  In all I probably only stood for about 2 minutes.

 

I was completely exhausted by the effort, so much so that I had to accept some help in transferring back into my wheelchair, something that I would usually stubbornly refuse to do.

 

Mark and I then spent a small amount of time reviewing the exercises I do, and he suggested another I could add.  We then briefly discussed what other options there might be to help me stand, and we decided that next time I go, we will try an electrical tilt bed.

 

Electrical Tilt Bed

 



Things were so bad that the video's that I normally produce to accompany these blogs, and to show you my standing, have been scrapped on this occasion.  I am so disappointed with the results that I don't want to share it, and have already deleted it from my camera.  Also the swearing would mean that it would have to be classified as an X-rated video nasty.

 

I usually have a full 2 hours with the physiotherapists, but only used up a little over 1 hour 20 minutes.

 

I checked in with the transport for coming home, and then waited for a driver to collect me.  I was called, loaded up and on my way just after 12.00 pm, and after a straight forward run home, was back indoors just on 1.30 pm.

 

It was a useful day, and answered some of my questions.  Certainly it is obvious to me now that a standing frame is not a reasonable option to have at home, as I need too much assistance to help me use this.

 

I was though, really disappointed with how things had gone with the stand from the plinth.  It has been 10 weeks since my last appointment, but even so I would not have expected this to have made standing so difficult.  After all, when I first went and stood at NHNN, it had been 4 years since I had stood, and it hadn't seemed so difficult,

 

I was exhausted so quickly.  These appointments are usually very tiring but it is worth it for the benefit, I feel I get from standing.  However, this stand hardly seemed worth the effort, and I seemed to spend more time struggling to maintain the upright position, than enjoying it, as I had done before.

 

It may be I was having an off day, or that the accumulation of all the hot weather we have had here recently has sapped my strength, or it may be that something in the way the machine was set up was slightly off from what I had previously experienced and this made it all harder work.

 

Whatever the reason, I am glad to have got some answers regarding the possibility of having a standing frame at home.  But I'm annoyed, disappointed and frustrated with myself that I couldn't even seem to achieve what I had done before, when standing. 

 

It is though, only a set back, and certainly isn't going to put me off trying to continue to stand.  I just need to find another solution, and that may still be the stand up powered wheelchair.

 

This morning, my shoulders, neck and arms are very stiff and sore, and this is perhaps a sign that something wasn't right as I had never had this before, after one of these sessions.

 

And just to add to my bad day, when I got home I found that I had lost my cap.  I knew I'd had it when I went into the hospital, and had taken it off when I went to the toilet, after getting there.  However, I don't recall seeing it after that.

 

Just another thing to add to a disappointing day out.

When a heart attack isn't a heart attack!!

A few days ago I was talking with Ron West, and he mentioned that he was going to have some tests on his heart.  At the time I said that when we had more time, I'd tell him about my experience of having a "heart attack".  Having thought about it though, its worth re-telling here as it might be useful for any of you to know about.

 

Let me first say that I have always had very good results whenever I have had tests done on my heart.  I have regular ECG's and Echo cardiograms, and am always told that my heart is working well and is very strong.

 

However my father died of a heart attack, very young, and his mother took medication for a heart condition for many years.  So there is a family history.

 

In 2000, as a precaution when they were investigating my growing weakness, and before I was diagnosed with Inclusion Body Myositis, my heart was given a full MOT, whilst I was in hospital having other tests.  They even did an Angiogram, where they ran a tube up from my groin into the coronary arteries, to check that these were clear.

 

Anyway, fast forward to the end of October 2005.  I'd been feeling a bit under the weather for a few days, with what felt like a chest infection, and finally one Sunday morning, I realised that I needed to do something about it.

 

Being a weekend my doctors surgery wasn't open but there was a NHS Walk-In Centre in Croydon, so I suggested to Mum, who was staying with me for a few days, that I'd go up there and see if I could get to see a doctor and get some antibiotics.

 

When I got to the Walk-In Centre, after having struggled to get up a huge step to get in, I was told that there were no doctors available, and there were unlikely to be any until early afternoon.  The nurse suggested that I go up to the local hospital, Mayday Hospital, and see a doctor at the out of hours service there called Croydoc.

 

Croydoc, was mainly a telephone based out of hours service, where you could call up and speak to medical staff and they would advise you on what treatment you needed, or send a doctor out to you, or refer you to the hospital.  There is also a small number of doctors on site, who will see people if required.

 

When I got there and registered, I had to wait about half an hour before being seen.  When I got in to see the doctor, I explained about the fact that I was feeling lousy and that it felt similar to how I had been on other occasions when I had chest infections.  I also explained that I had Dermatomyositis and Inclusion Body Myositis, and gave her a full list of all my medication. 

 

Now many of you will know "that" look a doctor gives you when you mention something like DM or IBM, and you know instantly that they don't know what you are talking about.  The arm length list of medication I'm on certainly didn't help.

 

Well she listened to my chest, and did all the normal things, and asked all the normal questions, before saying that she wasn't sure and really wanted me to go down to A&E to have an x-ray.

 

So I went along to A&E, which was in a same building and registered, and sat and waited to be seen.

 

After about 40 minutes I was called through.  I explained everything to the doctor, about how I was feeling and my medical history, and got "that" look again.  He decided that he needed to take some blood and arranged for a nurse to take this.

 

After waiting on a bed for about an hour, I asked what was happening about the x-ray.  The nurse went off and came back a few minutes later and took me through to another to another department.  If she hadn't taken me there I would have thought that it was actually closed, as there were no lights on and no staff seemed to be about.  Anyway, the nurse told me to wait there and someone would come and do my x-ray.

 

I was just getting to the point where I thought I had been forgotten, when I was called in to have the x-ray.  From there I was sent back to A&E to wait for the x-ray pictures to be sent through to the doctors.

 

Well I ended up sitting round for most of the afternoon, and eventually about 5.00 pm a doctor came and saw me and said that they couldn't find anything wrong and that I could go home.  At this point I was to tired and hungry to worry that I hadn't got any antibiotics, and was just glad to go home.

 

Once home, Mum cooked dinner, and I had just finished this and the phone rang. 

 

It was one of the nurses from A&E, asking me to come back urgently.  I asked if it was really necessary as I had spent most of the day there and I was really worn out.  He insisted that it was important, as results of my blood test needed to be checked again, and I really should not have been allowed home.

 

So about 7.30 pm I got back in my car and drove back to the hospital.  I was ushered straight through reception, and seen straightaway by the nurse who had called.  He explained that he needed to re-do the blood tests, and proceeded to take some blood.

 

There wasn't a bed available so I had to wait on a chair, in a corridor, near where the access for patients brought in by ambulance would come in.  So it was a nice busy area with doors being opened and closed to the outside, which made it nice and draughty.

 

About 10.00 pm, I was still waiting for the results of the blood test, and Mum who had come up to the hospital with me, was starting to drop off.  I suggested that she went off home, before it got to late, as she could get a bus right outside the hospital to near my house.

 

At about 11.30 pm, I finally managed to catch the nurse again, and ask him what was happening.  I pointed out that sitting in a draughty corridor was not doing anything for my health, and that I would be better off at home in my own bed.  He went to check what was happening with the blood results.

 

About 5 minutes later he came back, very apologetically, and advised that the blood he had taken earlier didn't appear to have been received by the lab, and he needed to do the tests again.  He quickly took some more blood, and promised to get the test results urgently, but advised that if the results weren't right he would have to admit me.

 

So about an hour later, the nurse comes to see me and says that the blood results are not good, and that I am to be admitted.  However at that time of night there wasn't a bed available on a ward, so I would have to stay in A&E, but as they didn't have a bed, I would have to stay on a trolley, but that this would be in a cubicle where I wouldn't be disturbed.

 

The blood tests that they had been doing was to measure the amount of Troponin, in the blood.  Troponin is a complex of three regulatory proteins (troponin C, troponin I and troponin T) that is integral to muscle contraction in skeletal and cardiac muscle, but not smooth muscle.

 

Certain subtypes of Troponin (cardiac troponin I and T) are very sensitive and specific indicators of damage to the heart muscle. They are measured in the blood to differentiate between unstable angina and myocardial infarction (heart attack) in patients.  A patient who had suffered from a heart attack would have an area of damaged heart muscle and so would have elevated cardiac troponin levels in the blood.

 

The specific protein the blood tests were looking for was Troponin T, or TropT, and this was elevated in my blood, indicating, to the doctors, that I had suffered a heart attack.

 

After a not very comfortable night on the trolley, I was transferred to a general admissions ward the next morning.  Nothing really happened all day as they were waiting to get me onto the cardiac ward.

 

Eventually, I was transferred to the cardiac ward late on the Monday afternoon, and hooked up to all sorts of monitors.  Although I was allowed to get out of bed, to sit in a chair, I wasn't allowed to walk around.

 

I was seen by one of the junior doctors, and went through all of my medical history.  When I told her I had DM and IBM, she told me that it wasn't possible to have these two conditions together, and certainly not at my age.  However, it became clear to me from talking to her that she really didn't know much about the conditions.

 

I explained that I thought I just had a chest infection, and had never had any pain in my chest to suggest that I had, had a heart attack.  However, my TropT was so elevated that she could not see that it was possible that I had anything else wrong, than a heart attack.

 

For the next two weeks, I stayed in hospital, having various tests on my heart, but nothing could be found, beyond this elevated protein to indicate that I might have had a heart attack.  I had some good discussions with the doctor about my DM and IBM, and I tried my best to educate her on these conditions and how they actually affect people, rather than what she had read in her text books.  I did meet her again, during an admission in 2008, and this time she was much more willing to accept that I could have DM and IBM, as she admitted that following our discussions she had gone away to find out more about them.

 

Finally, they did another Angiogram, just to check that there was no damage to the coronary arteries.  The two surgeons who performed this procedure were very good at explaining what they were doing, and I was able to sit up, a bit, and actually watch the x-ray monitor to see the tube being pushed up into the heart.

 

As they push the tube up, it causes a funny sensation in your chest.  As it gets pushed up, this increases the pressure in the heart, and can cause the heart to feel constricted.  The immediate reaction is, "Oh my god, I'm having a heart attack" but in fact its nothing to worry about.  It does though make you feel flushed and very warm, and rather awkwardly, you can feel an overwhelming urge to have a wet yourself!

 

At one point when they were pushing the tube up towards the coronary artery, one of the surgeons said to the other, who was controlling the tube, that he had was going the wrong way.  This raised two questions.  Firstly, given the mass of blood vessels on the x-ray monitor, how did he know which was the right way.  And secondly, and more worryingly, if he was going the wrong way, what part of the body was he going to end up in?

 

Anyway, the Angiogram, was fine and they found no problems.

 

Before being discharged, the ward sister came and spoke to me, and to confirm that I had suffered a heart attack.  She told me all the does and don'ts that I should stick to, and that I would not be able to drive for the next 6 months.  She also gave me information on dietary changes, that were recommended, and suggested that more exercise might help avoid a recurrence.  I told her that despite everything she had said, I could not see that I had had a heart attack, but that two weeks rest in hospital had enabled me to get over the chest infection I thought I had.

 

After I got home, I had a rest, and during this the phone rang, and it was the ward sister, I had spoken to earlier in the day.  She said that she had asked the doctors to look at my file and results again, and following this they had downgraded my condition from a heart attack to a cardiac event.  On the basis of this, rather than having to take 6 to 8 weeks off work, she now said I should be fine to return to work in 2 weeks.  The other guidelines should still be followed, but I would not have to stop driving.

 

Anyway, life got back to normal.  I returned to work, and many of my colleagues commented on how well I had recovered from a heart attack, and how well I was looking.  And I have to admit that I did feel very much better than I had for a long time, although I still couldn't believe that I had had a heart attack.

 

Fast forward now to 2009, and I am seeing one of the doctors at the National Hospital for Neurology and Neurosurgery, in Queens Square, London. 

 

As is normal the first time you see a new doctor, he was taking a full medical history and when I told him about this episode, he smiled.  He went on to say that in all probability I was right that I had not had a heart attack, or any sort of heart problem. 

 

He went on to explain that it is quite often the case that people with muscular conditions such as IBM, have elevated levels of TropT in there blood.  If the doctors had understood anything about IBM then they would have known this.

 

So if you suffer with IBM and a doctor diagnoses a heart attack after checking your TropT levels, be aware that it might not be as straight forward as it seems.  If you don't think you've had a heart attack, and in my case I had never had any chest pain at all, and was sure it was a chest infection, then make sure that the doctor has taken your IBM into account.  It might save you from spending time in hospital, and a whole load of unnecessary procedures and tests.