The bottom of the bell

Yesterday was another Osteoporosis appointment at the hospital and I had planned to post about that as my Osteoporosis journey continues.  I thought to give some kind of update but that’s going to have to wait until I’m in the right frame of mind.

One thing that did get discussed yesterday was the bell curve of bone density.  (As I’ve said before 0 to -1 is “normal” bone density, -1.1 to -2.4 is Osteopenia and -2.5 and below is full on Osteoporosis.)  At a previous appointment, letter and again yesterday the doctor and professor both said again that my case was severe.  I was quite … dismissive of the word “severe” and thought to myself quietly, “nah … its not that bad”.

Anyhow, here is a bell curve:

bellcurve

Yesterday, I asked the professor, “how old are my bones”?  He explained that at my age, I should be at the very top of the curve  Basically, you develop bone density and as you get older (40’s onwards), bone density starts to drop off, which is normal.  In time, many contributing factors (age being a prime one) starts the decline.  Anyway, he said, I should be at the top of the chart, at the very top of the bell … but I’m not.  I asked him where I was and he said, “oh you, you’re right at the very bottom you have severe Osteoporosis”.  (The word, “severe” came out again!)  Again, I was still almost like, “yea whatever”!

Now, I’m part of an Osteoporosis support group which is useful for information but I’ve just read this.

score

The lights have now suddenly gone on!

By way of reference, I’m 37, typically Osteoporosis is more common in women, and my score in my spine is -4.5.  This now has really hit home.  I don’t expect sympathy, I’m just a little shell shocked by this news and wanted to blog it.

Take a chance

Nothing profound really but felt the need to blog about this.  Yesterday, at work, I went to the toilet.

Upon my arrival at the toilet, what do I see but a £1 coin down the toilet.  This quickly got me thinking, do I wrap my hand in toilet paper and grab the money out?  (For the record, I didn’t and as far as I know, the money is still there!)  But this got me thinking, if I’d have taken a chance, I’d be a £1 up.  Life can be about making the right decisions and choices, about, “taking a chance”.

money

Whatever crossroads you’re currently at and you’re not sure, why don’t you, in the words of Benny Andersson and Björn Ulvaeus, “Take a chance“?

Incidentally below, are my favourite euphemisms for going for a wee)

  1. Talking to grandma slowly
  2. Spending a penny
  3. Draining the radiator
  4. Emptying my tank
  5. Going to water my horse
  6. Paying the water bill
  7. Writing my name in the water

~PAL

More calcium please …

Happy New Year!

Not blogged in the longest time, mostly due to writer’s block and not having a clue of what to say.  But the new year is here, welcome 2017 – boom!  What are your hopes for this year?  What do you expect to achieve?  What do you want from this year?

Me, I think I want answers.  Let me back track and tell you a very quick story …

In late 2013, I was limping around and after much persuasion (and nagging!), I went to the doctors and got a referral to the hospital who confirmed I broken my second toe.  How?  Who knows!  I assume by stubbing it on the bed but I really don’t know!  Fast forward to February 2015, whilst in Belfast, I break my left talus (the sticky out bit of your ankle).  I had surgery on it in April 2016, which I still don’t think is right now, and diagnosed with post traumatic arthritis in September 2016.  Long before my op. I was told by a friend (a recently retired GP) to try and get a DEXA scan to measure my bone density.  I mentioned this to my GP who smiled when I asked for the referral.  She told me, because I am a man and young, I’d be low priority.  I waited and in around May 2016, I think, I got my scan done.  Went back to the GP who confirmed it was negative.  I had/have Osteoporosis or brittle bones.  At this stage, I was quite laid back about the whole thing thinking it wasn’t that bad as I thought, it was a woman’s disease.  I went to the hospital again in October 2016 for an official appointment and a chat and it seems its a lot worse than what I had first thought.  I’ve been diagnosed with severe Osteoporosis!  (For informational purposes, a T-score of 0 to -1 is considered “normal”, -1.1 to -2.4 is Osteopenia (the stage before Osteoporosis) and anything below is considered full on Osteoporosis.  My T-scores were -2.4 in my hips and -4.5 in my lower spine.  So yea I have it pretty severe in my back!)

That’s where I am now.  I am currently awaiting 2 hospital appointments, one for my ankle and one specifically for my bones.  How do I feel?  I feel …

    • Old.  I have joined a Facebook group for people who also suffer from Osteoporosis.  It’s kinda strange seeing people’s stories.  Some of these people are 30/40 years older than me who have marginally better scores than me.  Occasionally, I still get ID’d when buying alcohol (get in!) and so it appears I have the looks of someone under 25 but medically, I have the bones of a pensioner!
    • Paranoid.  The weather at the moment is frosty and cold in the mornings and so walking to and from the bus stop for work etc. I am paranoid of slipping over and breaking something else!  Yesterday, we went to Sainsbury’s to get a few things.  It had been raining and the entrance hall ramp was all wet and slippery.  My son was holding my hand and as he went tearing down the slight ramp to the entrance, he slipped on his butt nearly taking me with him.
    • Why me?  My GP told me that majority of people who suffer from Osteoporosis are either:
        1. Middle aged women who have gone through menopause
        2. Black people as they don’t absorb the sun (Vitamin D) very well
        3. Older people because as you get older your bones start to wear away

      bones

I don’t fit any of these (although number 1 is questionable! LOL!) so it will be interesting to see where it all stems from because at this stage, they don’t know why I have Osteoporosis.  I intend to blog my journey with this condition/disease and give an update on my progress.  My next bone appointment is at the end of January, next update then.

~PAL

Cross cultural

Not blogged in ages – down to … a lack of inspiration and ideas mainly.  Saw someone last night who told me to get blogging again and someone else again tonight, who didn’t know I blogged.  But now, I have an idea, something to blog about …

In 27 days time (on Monday 8th August), I’m going here …

Romania

Well, more accuratly to Constanța, which is on the east cost of Romania.  I am out there for 2 weeks as part of a course I am doing.  For the first 3 days, we’ll be learning Romanian culture and Romanian Sign Language and then we’re off.

It’s worth pointing out at this stage, the Romanian signed alphabet is similar, although not the same, as the American Sign Language alphabet.  I actually learnt ASL fairly recently at a days workshop.  Initially, I felt like I was back in my early days of learning sign, but towards the end of the afternoon, we watched a film and I found I was actually understanding the signs without the subtitles!  Hopefully, the same will be true in Romania with their signs.

Back to Romania … after the first 3 days, we will be doing kids clubs, crafts, games, dramas, meeting the local Deaf people … and other things as they crop up.  All the events are geared towards Deaf people or CODAs (Children of Deaf Adults).  There is 14 of us in the group, 4 hearies and 10 Deaf people.  It’s going to be interesting to see how both sets of groups adjust to the new language and culture.  Nervous?  No, I don’t think so.  Apprehensive, maybe a tad!  Rebekah and I (and another guy in the group, Jay) have been to Romania before when our friend got married, who is now living out there with his kids and Romanian wife.  So, culture should be fine but back then we didn’t know any Romanian signs.

This reminds me of a funny story whilst we were out there.  From the hotel one night, Rebekah, Jay, myself, along with two other guys told a taxi driver we wanted to go to a “night club”.  Harmless right?!  We got there, it was very dark and dingy with no music playing.  We thought nothing of it and carried on talking.  An hour or so passed and the music still hadn’t started.  It was then, whilst looking around, that we realised we were in the wrong place!  Men were muttering sweet nothings to ladies that were there, it had seedy lighting … yes, we’d ended up in a strip club! (Ooopsie, sorry mum!)  Turns out that we should have asked for a “disco”!  I wonder what the taxi driver when four blokes and a girl got into his taxi, asking for a strip club.  Did he think we were all Rebekah’s pimps!?  Ha ha!

Anyhow, I’m going to try and blog everyday whilst I am there but it depends on availability of WiFi and how busy we are.  Failing that, I will try and write it down the old fashioned way and do a blog when I get back to England, on the 22nd August.

Till then, ‘la revedere’!  (The Romanian word for, ‘goodbye’.)

Oh and this, if you’re on Twitter – please retweet this.  Thanks

tweet

~PAL

Registering yourself

Not blogged on a deaf related subject for a while, partly due to nothing to say, partly due to being busy with work.  At the moment, signed off from work, has given me the chance to sit back, take time out, drink copious amounts of coffee whilst downing painkillers!

Anyway, registering yourself – why can’t deaf people register themselves as deaf?  I mean, I’ve looked on a few websites and you can register yourself as partially sighted or blind, but you can’t register yourself deaf – how come?  Maybe it is a certainty that as you get older, you will lose some of your hearing, so maybe the view is taken, “tough, get over it”.  But I’ve noticed, that if one registers one’s self as blind or partially sighted you get various benefits or concessions.  At a very quick glance, you’d get :

  • A blind person’s tax allowance
  • Reduction (50% off) your TV license
  • Blue badge (for free parking)
  • Free cinema pass for your carer

These are just items I have found looking very quickly but why don’t deaf people qualify for these?  I remember talking to TV licensing before and they said, they viewed TV as a “visual affair” and so that’s why deaf people don’t get the reduction on their TV license.  Granted a lot of programs now do include subtitles, but have you tried watching the news live with the dreadful accompanying (not accurate) subtitles?!  A lot of catch up television doesn’t include subtitles and so if you don’t watch it the first time, well you’ve missed it.  I don’t see the government giving out free PVR‘s for deaf people to record onto?

The same goes for subtitled cinema, they tend to only show one subtitled showing of said film, miss that because you’re working, and you have to wait for the DVD.  (Both times of late my wife has been to the cinema to see a subtitled viewing … and the subtitles weren’t turned on.  Really?)  My wife doesn’t expect me to be her interpreter (or the kids for that matter) but why should a blind person get their friend in for free whereas a deaf person couldn’t get their hearing friend in?

Parking – Ok maybe deaf people don’t need a blue badge to park, but there are places, such as at airports and other public places that have a barrier that you need speak into.  The deaf person can’t hear what’s being said and can the operator understand a “deaf voice”?  I remember quite recently, a well known, almost famous (in the deaf world) deaf guy was “trapped” in a car park and couldn’t get out.  In the end, he had to phone his hearing wife on the phone and she had to speak to the man (through the phone) into the barrier.  Is this really equal access?!

I’ve noticed that items are readily produced in braille or large print such as the latest EU Referendum tosh that the Government spent £9 million on, but when deaf people want it in their first (or preferred) language of BSL, they often get over looked.  Why?  I’ve just done a very quick bit of investigation.  There are 20,000) Braille users vs. 90,000 BSL users.  (Both of these are approx. figures.)  Yet the EU Referendum package wasn’t translated into BSL.  Erm, why not? Shouldn’t you treat one sensory loss as you’d treat another?  It isn’t fair!

Government – sort it!

Name calling

Not blogged in a while – maybe I am becoming more placid, busier (that is true, I have),  finding more “stuff” to occupy my time with – who knows?  What I do know is last week, I was riled with our glorious NHS.  My leg operation got cancelled, again but that is a whole other blog post which I could write when I am in recovery.

For now though, I want to moan about another aspect of the NHS – audiology centres.  Following the cancellation of my operation, my wife needed a new tube for her hearing aid because it had broken.  Fair enough, so off we trot to the audiology place – just a small walk away.  In the morning they have a walk in centre, great I thought, no appointment needed.  What I didn’t know until we got there, was the absolute shocking deaf awareness!  This is a place where people go to get aids to assist them to hear.

The receptionist who greets us, exaggerating her lips, “whattt issss yourrr name pleassse”?  Not even a basic BSL greeting with voice, “Your name what?” – NHS, your first fail, please learn basic sign language!

In the waiting room (I should have taken a photo), they have a massive TV which lists patient’s names.  On a piece of paper underneath it says that the screen is only used for appointments and not “walk in” patients – NHS, your second fail.

I find out whilst waiting that in all the times, she’s been to the clinic, not one member of staff has even a tempted a bit of basic BSL with my wife – really?!  I am shocked.  NHS, you suck!

The audiologist comes out and calls out my wife’s name, not particularly loudly either (or maybe I’m gong deaf!?) – So a profoundly deaf person in there, unless they have eyes like a hawk, the second someone comes out would miss their name being called – NHS, you screwed up again!

We go into the room, by which time my blood is boiling and so I feel that I have to bring up all these things.  I bottle it all, apart from the non functioning TV with the lack of names – “well, we use 6 different systems and the TV only works for people with appointments and not walk in patients”.  Fair enough, I calmly explain to her, but why can’t you even write names on a piece of paper like at the airport, “oh I didn’t think that!”.  Really?!

Why don’t the NHS attend basic BSL courses or at least a basic deaf awareness course?!  I know, I am going to Bangladesh to go and work with the locals where only about 2% of the entire population speak English …

name

… or maybe work at the airport collecting passengers whilst showing their names on a placard!

Encryption of messages

WhatsappWhilst reading my Facebook feed today, I read a few people had posted an article to save Whatsapp in the UK.  Curiosity got the better of me, and because I thought it was yet another load of rubbish I decided to take a further look – no, it was true, David Cameron (our Primer Minister) is considering banning WhatsApp along with Facetime, iMessage etc.  His reasoning, because it falls under, “methods of communication that cannot be read by the security services even if they have a warrant”.

I kinda see where he is coming from, because I guess he is trying to stop the services to try and counteract acts of terrorism which I guess makes sense.  But has David, and his ministers thought about this:

In the UK, according to the British Deaf Association, there is 156,000 people living in the UK who consider British Sign Language to be their first language.  These are people such as my wife, my friends and generally, the people I care about.  (By way of representation of figures, there is roughly 63.5 million people living in the UK at present.  So these select group of people equte to about one in every 407 people.  (407 x 156,000 = 63,492,000).

Now, how many interpreters do we have?  I went to the ASLI (Association of Sign Language Interpreters) website and without any filters, searching for an interpreter, I found 505 records.  So, breaking that down, this means each interpreter has to service the needs of nearly 309 deaf people.  (156,000 / 505 = 308.9).

So, taking this to the next level – is David Cameron going to ban British Sign Language?  I should hope not, I mean how will deaf people be able to communicate?!

But my point is this; British Sign Language is hardly an “encrypted” language like Whatsapp, iMessage etc. but can 505 “registered” professionals can’t communicate what 156,000 people are saying continually!?  Is this country bi-lingual?  Do we provide enough access for BSL users?  What is this country doing about the future of deaf BSL user generations?  Where is the provision for thiDs group of people?  Are deaf people getting the access and rights they deserve?  Does this country have any deaf awareness?

The answer to all these questions, in my opinion, is negative!  What are you going to do about it Tory government?  Sign language isn’t really that hard to learn but think of what a difference it would make to the every day lives of ordinary people.  Getting your haircut and being able to have a chat with your hairdresser, being able to order a coffee exactly how you want it, going into a shop and asking for help if you can’t find what you are looking for.  The list goes on and on.  Please do something, please!  For this deaf BSL generation, the next and the next …

Thank you for the service

Recognise the guy on the right?  No, I didn’t either!
His name?  Matti Makmatti_makkonenkonen.  So, who is he and why am I writing about him?  He is the guy (with Nokia’s help apparently) who came up with the idea of SMS (Short Message Service) or “texts” over mobile phones (or cell phones to you Americans).  Without his idea, there would be literally tens of thousands of Deaf people still unable to contact their loved ones in the way they do today.  Who would of thought SMS has
been around since 1992?!  Not that long ago really!

compact_minicomObviously technology has moved on leaps and bounds and here is one way Deaf people used to contact their loved ones, whilst on the move.   This is an Ultratec Compact Minicom and was the first minicom I ever owned.   It could be taken out of the house and it ran on 6 AA batteries (that didn’t seem to last very long!) or you could plug it into the mains.  I guess the idea of it was very primitive and how Deaf people used to contact people like the AA or RAC whilst on the move.  I bought mine off a friend about 15 years ago at Birmingham Deaf Club.  Between the two of us, we now have 3!  A great idea Ultratec, but a tad annoying and if your phone came off the cupplers at the top, it seemed to disconnect the call.  Most annoying!

UniphoneThis is what we have now, a Uniphone 1150.  I only bought it about 10 years ago at a whopping amount of £300!  We can both use it and it acts as a minicom and an ordinary phone.

But who uses these now?  Which companies actually accept calls from Text Direct – this is whole different blog.

But what do we use now?  We still use faithful SMS (thanks Matti!) but now with the invention of smart phones, two apps. have been created that has literally changed the lives of Sign Language users overnight.

Firstly, on Apple iPhone, you have FaceTime.  10/10 Apple!  With this, you can make voice or video calls free iPhone to iPhone perfect for Sign Language users to communicate with one another in their first (or preferred) language.

And the second?  Even if you don’t have an iPhone, you can download this on any Android or iOS device – welcome Glide!  This is a brilliant app. wherebyglide-logo-blue you can leave video messages of up to 5 minutes in length using your phones camera using sign language.  I can’t tell you how brilliant it is.  I don’t use it every day but we use between each other and friends on a regular basis.  The videos are not saved on your device and so don’t waste space on your phone.  The founder(?)  Sarah has taken the initiative and learnt ASL.  If you haven’t already got it, download it today!

Thanks Sarah(!) and RIP Matti.

A simple awareness maybe?

So, I’ve not blogged in ages – seeing a very old friend on the weekend prompted me to blog … and so here I am!  You next MJ, I’ll be watching … 😉

ASL - I love youToday was the day Peter (our son) had to go to the Birmingham Children’s Hospital. To cut a long story very short (too late!), he isn’t talking and to get some speech therapy, he needed to have (another) hearing test.  (This would now be test number 4.)  Having arrived there, under slightly calmly circumstances compared to last time, I was impressed.  (That’s a whole other blog post.)  

You go in, take a ticket like you do it at the delicatessen and wait for your number to be called.  The automated system, eventually calls out your number and tells you which kiosk to go to and so you can check in.  We were both impressed, not only did the system call out your number but it also displayed on a relatively huge TV screen – BCH, 10 out of 10 for deaf awareness … but that’s where it stopped unfortunately.

We checked in and waited right next to audiology.  Looking up, I saw two kids, brother and sister, I assumed.  Both with hearing aids with their mother.  Their names got called and in they went … but was it shown on the display?  Oh no!  Good job their mother could hear I thought.  A short while after, it was our turn and … “Peter Leonard”.  Again nothing shown on the TV!  Why not?!

How hard would it be to add the patient’s name to the TV screen?  It is basic!  Need teaching?  All you need is a computer and a monitor to project the name on … you have hundreds of computers scattered around the building being a hospital and a few TV’s positioned around the room for the “deli. counter” display.  So, why don’t you make use of the technology you have and put on the next patient’s name?  It’s a good job I was with Rebekah otherwise, how would she know his name had been called?!

Then, upon going through – Peter had to have his hearing test but this caused dilemma.  Only one of us could go in the room with him so as not to distract him.  Fair enough I guess, but the lady who greeted us couldn’t sign which meant Rebekah couldn’t go in and so I had to.  (She wasn’t the “proper” audiologist, she was more of her assistant.)  That’s fine but what if Peter really wanted his mummy whilst being whisked away in a tiny claustrophobic room?!

After the tests were over, Rebekah was allowed in the room for the consultation where Rebekah could come in to hear the results with the audiologist.  She scored 10 points for spotting Rebekah’s hearing aids, but then promptly lost them all by saying, “can you hear what I am saying?”  Why oh why can’t these people in this profession sign?  Would it be that hard?  Why can’t the NHS make this a prerequisite of the job? Why is there such little deaf awareness?  Why why why?!

Answers on a postcard to the usual address!  #RantOver!

Crutches and hearing aids

Whilst away on a trip to Belfast nearly 3 weeks ago, I was a tad clumsy to say the least.  On my last day, whilst walking through a park and talking to a friend, I managed to trip over a tree stump and had my first self propelled flying lesson.  I flew back home, which was an interesting experience to say the least and a tad painful!  (I know, I know!)  Various hospital appointments later (don’t even get me started) I had discovered I had an “alvusion fracture of the lateral malleolus” and an “osteochondral fracture of the talus”.  Because that wasn’t enough, I have also damaged the ligaments in my left wrist and obtained my first sick note since going out to work when I was 17.

Although, the pain is beginning to subside slowly and the swelling is finally starting to going down, the whole thing does have a few frustrations.  I guess some are quite unique in having a deaf wife whom we use British Sign Language as our preferred home and first language.  Frustrations such as:

  1. If I want something, I can’t just shout.  I have been sending countless text messages from bed to my wife downstairs asking for drinks and for other things to be brought up.  (She’s been ever so good!)
  2. My crutches went crashing to the ground in the bedroom the other day.  (The living room is below our bedroom.)  Upon feeling the vibration of this my wife flew up the stairs to check that I was ok.  (I guess not so much a frustration, but showing she cares.)  But I guess a hearing couple would just shout up, “is everything ok up there?”
  3. Having conversations whilst I am on my crutches is different and awkward.  A hearing couple can just continue to chat but if I want to say something, I need toJust after the accident stop and then sign.  Then when I am finished get going again on my crutches and then stop again where necessary.  That said, seeing a conversation whilst concentrating to walk with the crutches isn’t easy either!
  4. If I am not walking, I am sat down. (Logical huh?!)  I saw a lot of deaf people last weekend and was sat down a lot to rest my leg.  But looking up to sign to someone who is about 2 or 3 feet taller than you (because you’re sat down) and looking right up into their nostrils is a bit disconcerting and makes me think from now on, is my nose clean?
  5. Try understanding BSL when you’ve got a dose or two of codeine inside you.  I thought it was hard enough trying to understand sign language after an alcoholic drink or two but codeine is definitely much more challenging!  (Even more so now my GP has upped my codeine dosage by basically 4 times!)

Oh and here’s another photo of my ankle.

Big foot

~PAL