PS SOME OF MY PAINTINGS

What a day! Dr in the morning re my funny tummy (was sooo poorly yesterday!!) Then at 2:30, perfectly on time the ambulance arrived to take me to Hx to see the Neurologist. It was one of the new , expensive ambulances... that does not fit in my wheel chair... So I never did get to Neurologist and apparently the only one that will allow me to travel safely is very old and has the nick-name "Doris" !!!

So I do hope that Doris is available when I go to Leeds next Monday to see the breathing specialist... Breathing is getting a problem... well you just need to do it don't you !!

So as a PS, and as I have been asked several times, I will show you some of my work.

HUG ME, I'VE GOT MND

A SPECIAL DISABLED TOILET !

I try to go to see all the productions at Tod Hippodrome. Each one is excellent, I have never ever been disappointed . The musicals especially. are wonderful !



Well,.................. as those of you who have travelled/ are travelling, the ALS route will know... at first you can manage toilets. The next step is that , when out, you need to use a disabled toilet with those bars that come down... then you need to use one of those plastic seats that raise you up.

Well. if I went out with a friend, then,  she would help me up, so that was OK. But very often I went out by myself.. especially to the Hipp.
So ...., on a number of occasions I had to ask total strangers to help me off the toilet when at the Hipp. They were happy to help, but it was difficult for me on two accounts.. 1. There were no side bars and 2.And the helpers were unknown to me !

I spoke about this to a committee member and the side bars were put up, but sadly this was too late for me , as by now I was in a wheelchair and couldn't manage to get in the door.

BUT having highlighted this the Hipp have spent £29 K on developing a proper disabled toilet area. OK I cant use it but others will be able to.
In September the Disabled toilet area is to be offically opened.
There are to be two people cutting the ribbon,on the open day... Craig Whittaker our local MP and......................     ME !!!

Wow , how proud I  am ! I have never opened anything before and I am proud that having brought the need for appropriate toilets to the attention of the Hipp, they have responded... so lots of people will be able to visit the theatre in the knowledge that they are able to use a loo which will be appropriate, should they have needs.

HUG ME, I'VE GOT MND

BREATHING ANXIETIES

My life has been hectic as usual but the main issue for me, has been re breathing.. I am having tremendous difficulties. It appears I should have been given more tests in Feb but this somehow didn't happen.

It has now reached what feels like a crisis for me. I'm struggling in the evening and terribly when going to bed as I can.t lay flat which causes difficulties with turning.

 I end up gasping and very distressed. My night carers are extremely kind and soothe me as best they can.... but they cant breathe for me. 

However I rang the appropriate consultant in Hx today and know that I am now being referred to Leeds as a matter of urgency. 

There  I expect to either be fitted with a mask, which forces air into you or (my preference) will take part in a new trial of a thing like a pace -maker which will stimulate the muscles around my  lungs. Of course I need to know more about this trial, it has been used on spinal patients for a year and is now being used on MND patients who, as yet, haven't had the mask thing, but need help/support with breathing.

 I really thought I was going to have a heart attack the other night my breathing was so so laboured for so so long... and... having a DNR in place, I got even more frightened as I'm not ready to go yet !!!

No,  not for ages!! There are too many too good bits and there will be even more once I can breath with less effort !!!.

HUG ME, I'VE GOT MND

MY TRIP TO WHITBY

A few times I have been asked what I would like to do that is special.

 I thought of four things at the time. : To go to New York ( friends did promise to go with me but sadly it never materialized………….. and cant now , I guess); to have pink hair (I did have a rinse but it came out after only three washes); to have an ice cream maker………(Bought ! and a great success too !!); AND ….. to go to Whitby………….

So last Thursday my friends Richard and Anne picked me up in the car I had hired (£116 per day), with a lockdown for my wheelchair. We went north to Whitby!!

YEY!!!

It was sunny, and we took the scenic route (But as everyone in a wheelchair knows when you are in a vehicle every bump matters !!.. )………but that apart.. . We arrived and it seemed even hotter. Seagulls called and you just knew you were by the sea… WONDERFUL!!!

Richard, who, when he gets an idea is rather like a terrier, decided I should have a trip in a boat!

I looked and just knew this would be impossible. I would need to be carried down steps, lifted over the edge of the boat and then sit on a bench… all impossible … eventually he simply had to believe me !

Then, about 3:00 by this time, we went to The Magpie for Fish and chips. Exactly what i desired.. We ate them by the bandstand and then sat in the sun. I had two conversations re wheelchairs with people who admired mine. One was with a girls’ mother. The girl, very white, spends her days on her hospital bed as it’s the only place she is comfy. Her local authority doesn’t provide tilt in space which is what she needs. I thought my chair was basic, but compared to hers it is mega high standard … how sad that a young woman stays in her bed because it is too painful to go out………

As my first physio said, it’s the creaky gate that gets the oil!!

 I said to the mum perhaps it might be an idea to pester her OT and physio………….. I guess that I’ll never know.

After our lunch we went onto the pier, but there are steps towards the end bit and thus no wheelchair access.

We sat in the glorious sun, sea gull cried as they wheeled around ……… utter bliss.

Anne and Richard afterthe Fish and Chips

As I get more ill it’s the simple things that give me most pleasure.

Then a trip to the church and the Abbey. The church was closed which was such a shame. I knew that David Smith, now Canon David Smith , our former vicar in Yarm, had been in charge there.. And I wondered if he still was… I wanted to surprise him. I found out later that he hadn’t retired and was still there but we didn’t meet up, as the church was closed. …….What a shame. ………..On to the Abbey. Well signed for disabled  BUT to get to the Abbey, after the easy entrance lift, you had to jiggityjog around the perimeter and then I couldn’t find an actual entrance for me in wheel chair!!!!!! Anne and I just laughed at the poor access for disabled people.

Me at the Abbey

We left and went to visit Richards’s sister in Guisborough.  When we left we drove past the best ever view of  Roseberry Topping. I have fond memories of Roseberry Topping. Each morning as I came down Gypsy Lane, on the way to school at Swans Corner,  I would see it straight ahead of me.  Also memories of  climbs up there. Two specially memorable.. Taking yr 6 up ( I worked at Nunthorpe Primary) and Simon the other teacher hurt his back. I had 60 children to manage and had to dial 999 for help. Also my first ever trip up on New Years day.. What a mistake ! Climbing without water and with a hangover, boy did I feel rough!!

We continued on to Yarm. I said to turn too soon and ended going up Ormsby Bank not Gypsy Lane so thus didn’t see Nunthorpe Primary at Swans corner. I then didn’t remember the route, but knew the post code of where we were going (to see my former neighbours)  so SAT NAV was engaged !

We arrived at Yarm and drove up at my neighbours... Christine and Terry. It was wonderful to see them. They had prepared a tea/ supper of sandwiches and cakes and some fizzy wine. We chatted about Whitby.. (Sometimes people find it difficult to get to the nitty-gritty of the meeting. I hadn’t seen them for many years and was now very ill, but this was obviously difficult for them to tackle.) We eventually really  talked and all was well. We mentioned things that we had shared: Chrissie playing with their boys in the sand pit; my husband helping to lay the patio .. and it still was there; our Laylandii hedge which still existed and still well trimmed as we left it; the removal of my pink rose hedge at the front (planted in memory of Eleanor), how I fed their baby and sent Christine to bed as she felt so ill,……. …………. And many, many other things.

It was wonderful to see these friends with which I had shared so much.. but funny that Richard eventually asked where I had lived…… NEXT DOOR RICHARD !!! 

My home in Yarm was large by comparison to mine now. I lost a lot of money when my husband and I separated. We valued the house and I paid his half and took out a huge mortgage… but by the time I sold to move to Tod house prices had fallen and I lost a lot.

 But that is history.

Me with Christine and Terry

I got home at 11:30 pm !! I was so excited from such a super day out that I couldn’t settle. I had a glass of wine and some cups of tea, …………… then bed.

Having slept well on my back for the two preceding nights thought I would have another good one…………. But this wasn’t to happen.

Sleep and bed are becoming such a stressful time for me.

……… and that will be my next blog,……………… I think……….

HUG ME , I'VE GOT MND 

TO PEG OR NOT TO PEG !!

For the last month my breathing difficulties have increased. I can no longer lay flat. In the last week I have had terrifying incidents of not being able to breathe when turned in the night, ( every 3 hrs to stop pain).Three days ago , just turning I had to gasp for air. Now, part of this was needing air, and then there was panic.. the situation lasted for 35mins before I could calmly breathe.
On Friday last I had the thing on  my finger, with recorder, to do overnight sats..I do hope it worked.. this is what I wrote when the recorder was returned\\\;...................

TO WHOM IT MAY CONCERN:

I did this test on Friday 12 July. As I have gel nails I felt it appropriate to place the finger monitor around my toe nail, where there is no nail varnish.

When the unit was switched on it flashed “L” .So ,realising this wasn’t working as it should, I then had it on the correct finger, according to the instructions.

As Dr Thomas , at clinic, has always done the finger monitor on a gelled nail, I do hope this has worked !

If you wish me to repeat it, because: I put it on my toe first; or the gel needs to come off, please do say. However, should I need to repeat it, please can you let me know as quickly as possible as I am having significant trouble with breathing. This happens when I am lying flat, when I am sitting and lean forward or to the side. It can also happen on other occasions, even just when I’m sitting.

I do hope I get a response soon as I am very frightened and even fear going to bed. I mostly lose my breath when I am in bed, thus I am not sleeping well and wake with headaches.

Thank you

So you get the picture... except for two things  1. I wake up dizzy also and 2. My nails are a lovely purple shade    !!!!

So having discussed PEGs with:   Prof Shaw in Sheffield; Rachael, the consultant at Overgate Hospice; and more recently my Speech Therapist; and dietitian  I agreed that it would be the correct measure to have a PEG .

The PEG would be: because my breathing is getting worse and a crisis intervention would be to be avoided, also: it would be used for giving me extra fluids ( drinking the amounts of liquid I need with a catheter is very draining ) and to take my meds as liquid:: and finally I would be able to have a feed breakfast.
Breakfast is a real problem.. I cant eat cereal or bread... Ive had eggs and sometimes can have bacon... but it depends on how it is cooked.... and that depends on which carer I have...........

So armed with all this as a background, I met the    today . I was told  Gastroenterologist  by the Gastroenterologist I would be able to have it soon, and that it would be done under a local anaesthetic with an intravenous sedative.

Jokingly I said  can I have a large dose of sedative as I didn't fancy swallowing a tube... this was met with a ... the anaesthetists   will decide  how much you need based on weight etc !! What a humourless man !!

Then I asked how would I manage with two tubes in stomach with the hoist belt    .    I WAS TOLD I WOULD HAVE TO BE VERY CAREFUL !!!....
NOT VERY HELPFUL !!

So here we are : Me agreeing to have PEG with a local aesthetic and him agreeing to do it .
I then asked what would be my position for the op. On your Back... was his response.
But I cant breathe when on my back ............

The procedure only takes 20mins...

I CANT COPE FOR EVEN TWO MINS,   SAID I.

BUT IT ONLY TAKES 20 MINS,  HE SAID.................

BUT I  CANT EVEN TAKE 2 MINS ,,SAID I..............

This conversation continued .

In the end it was decided that I will have the op but under anaesthetic. The  will be able to organise my breathing .

The op will take place in the next 6 to 8 weeks (Hopefully!!) But it does depend on getting a space in the planned ops , ie to get a theatre space.

BUT as this time passes my breathing gets worse and thus the op gets more tricky... conundrum , isn't it !!!


HUG ME , IVE GOT MND

GLASTO THE FESTIVAL 3.................ESPECIALLY FOR PEOPLE WITH MND

II heard of my diagnosis at the beginning of December 2011...

It was on a routine visit to my GP re mu Thyroid levels.... It was Friday evening, late. I had no-one with me... my GP said she had had the results of my MRI and electromyography tests and it was confirmed that I had MND. She gave me a print out of info re MND which said that life expectancy was 2 to 3 yrs ...
How horrified was I .
I decided to wait til the Monday morn and ring the neurologist... clearly he was horrified that I had been told in this manner...
He then made an appointment for approx 12 days time,
I decided to use the time t think about my future with MND and to google as much info as I could.
Fully armed with info and a plan for my future ,I went to see the neurologist.
He was kindly and a support plan was put into place immediately... however. as Christmas was coming up this didn't swing into action till Jan. I did , however feel supported and knew that this time of thinking was good.
 It was only then that I told my dear neighbours, then my very best friends and eventually my girls ..........of the diagnosis...............
So how did I cope?......
I decided that I would try to live my life as I had done. always. I recognised immediately that my life would involve having carers eventually, and \I hoped that they would take over the mundane  and difficult tasks that would use my energy, allowing the special events in my life to still occur.
 Of these painting would be a priority.. It is................ and I still do it.. I have an exhibition of my work in October this year........
I had a wish to go to the island in the Bahamas , where I lived when I was a child........... but soon it became obivious that this would be impossible.
My next wish was to go to New York...... my friends said they would go with me......... but this didn't happen........... sadly.................
 my next two wishes were to go to Glasto 2013 (especially when I knew the Stones were playing !) and to go to Whitby via Yarm (where I used to live).

So to Glasto .......... any trip like this takes planning. I hired a big enough car to take myself in wheel chair and all the equipment. This included  a tent, hoist, commode and luggage. The luggage included yellow bags, dressings, scissors, bedding, warm clothes ( I'm always cold ), tena lady, gloves and all the normal stuff like torches...
 I had organised that a hospital bed would be delivered to the site.
I must admit that the people on the disabled site were of a great help. (Lots of people on this site hire vehicles.. they are probably people with walking difficulties rather than people like me , and you, who cant weight bare and utterly rely on a chair. ) OH I organised that our tent would have electricity, IE to charge chair during the night and the hoist during the day and also to power the bed..

So planning................. is of the essence,,,,,,,,,,,,,

Also the choice of carer is important.... I had a choice of two........... the one I chose was a nurse (daughter of the woman I always have gone to Glasto with). I knew she would be able to care but wouldn't be phased by the enormity of \Glasto ,as she had been there before.
My other possible carer would have been great as a carer............ but , as she hadn't ever been to Glasto, i feel  would have been overawed by the whole place, by the sleeping in a tent, and by all the practical adaptations that have to be made in such a situation.

I think its important not to cling to your carer in outing situations. Thus after breakfast and dressing me my carer went off... returning at 2;:00 so that we could go to the Pyramid by 3:00.
There I stayed till midnight .. \My carer discreetly emptied my catheter.. I was surprised that people didn't stare.. She kept me in water and food.

It was  a great shame to me that I couldn't mooch around the site as I always had done... but this was too difficult.. The roads//tracks were so rutted that travelling in a wheel chair was mega uncomfortable........... so you do have to make compromises.

HOWEVER  I was only too happy to be on the site and to see some of the bands... especially The Rolling Stones.

So you see ,you can do special things with planning and with an element of compromise..
 its sad that compromise is past of our lives , but sadly it is.

I do hope, like me, you are able, want to, do things that others say are soooooooooooooooooooo difficult........ THEY NEEDN'T BE.

HUG ME , I'VE GOT MND

GLASTO.. THE FESTIVAL FROM SOMEONE WHO HAS MND....... PART 2 (MY RUN-DOWN OF THE MUSIC)

OK! just to explain the title... I'm writing this Blog as a woman with MND, but also as a woman who lives a life.. so you'll get both here, the MND perspective and the festival goer perspective.

So the first dreadful night. When I hired the hospital bed it couldn't be delivered with a mattress because of (yet again) health and safety restricticions !!!!. I could get one off them but it would be expensive. SO.... I bought an inexpensive one from Argos ( Knowing Sweetie Pie, my grand daughter, would be on it when she visited)  This was a mistake... I could feel every spring when I did eventually get into bed...BUT  getting into bed. by now it was dark and we had little torch light.. Elsa has used a standing hoist but not the same one... so i gave her the 3min course on the hoist.... BUT  nothing could prepare either of us hoisting on grass!

So morning... I didn't want to spoil Glasto for my friends... so, leaving me with tea and a bacon sandwich , off they went to suss out the whole scene.

At 2 we got together and set off for the pyramid stage.

I had hoped to meander amongst the other stages and shops as ever... but one journey to the pyramid indicted that this would be impossible..

You see ,this a farm. Farms use tractors. Tractors leave rutts....wheel chairs on ruts go BUMP BUMP BUMP...... and it is very uncomfortable....  believe me.

But I got on the the viewing platform for the bands.....

Here is my three day run-down of all the music I saw...

FRIDAY

3:30  RITA ORA... Amazing !!! dressed in red.. I didn't understand why she wasn't higher up the performers list.

5:00 PROFESSOR GREEN.. what a waste of space !!

6:30 THE VACCINES... had never heard of them ( My problem ?) Inoffensive but that's all I can say!

8:30  DIZZEE RASCAL    Amazing!!!   He got the whole enormous audience, on his side and we all whooped away !!! YEY !!!!

10:30 ARCTIC MONKEYS... OH dear !!! I thought I was going to see Snow Patrol !! get the link.,. coldnesss.!!!! and Arctic Monkeys didn't do it for me !

SATURDAY

3:30  BEN HOWARD....  delightful !!

5:30 ELVIS COSTELLO...   well it was him and a good performance

7:00  PRIMAL SCREAM... By now, the whole of the Pyramid area was filling . the crowds were massive.. We were were all waiting for the Rolling Stones... Primal Scream were as they are, but the audience didn't please them . We didn't respond to their many requests to "Make some noise"... the lead singer seemed to get more and more frustrated and eventually said "Come on you Fuckers, make some noise "! Well after that who would..????     Not me !

9:30  THE ROLLING STONES... A beginning number Jumping Jack Flash with lots of fireworks... Lots of older tracks... but the BBC joined later and I don't feel the TV viewer got the best of the performance. I was electrified and the disappointment for me was that "Hey, You, Get Off My Cloud" was missed off the set. The whole experience of seeing the Stones was phenomenal for  me. It was a main thrill of Glasto with MND.

 And yes, unless ALL The Beatles reform !!!!then I wont go again.. this was my last Glasto.. after 12 yrs of going ... AMAZING !

SUNDAY 

3:45  KENNY ROGERS...  I arrived when the crowds were thick for Kenny. It was amazing .I simply said excuse me and the people parted.... like the Red Sea. This is soooo Glasto. 

I have never seen a fight or unpleasantness.. OK' people get drunk and/ or have too many drugs but they simply seem to sleep and /or just be happy. As I was getting through the crowd, people said excuse me to me ! !!!and they parted like the Red Sea ! eg    At one point,  a guy was sleeping and in the way, his mate kicked him ,and said get out of the way for the lady. He moved immediately . 

What kindness, what courtesy... 

I was touched. 

Sorry but,  this is supposed to be a commentary on Kenny Rogers.. 

Well, it seems traditional on Sunday afternoons at Glasto ,that you have a Kenny type person. Families sit down and chill. BUT this year plenty of families sat together and there were many standing... He was  sooo well received. Simply delightful with lots of one liners........................ sooo good. And I didn't expect to be saying this ! WONDERFUL 

5:30 VAMPIRE WEEKEND...  for me, unmemorable.. think I was chatting and eating and having the only pint of cider of the weekend!!!!!!!!....

7:45 NICK CAVE AND THE BAD SEEDS... Oh dear !  Can't say anything positive .because, I just don't like songs about death and crudity.!!!!!. but it seems, the very few do ! However there was great sigh of relief as they ended , ie from Anne and and I .. and the THEN he had the audacity to come back on for an encore !! And no-one had shouted for one. Anne and I simply looked at each other and said .. OH No !! Even the Security said.. surely they wont be back again,, and they were young.. so it just wasn't me !!!

9:45 MUMFORD AND SONS   the band I had looked forward to ,...... apart from the Stones,..... all weekend.... but 30 mins prior to their performance I started to feel very ill .I couldn't get my breath. I was soooo cold despite 2 jumpers, a thermal vest, a Tee shirt, a coat 2 blankets and a cagoule type cover-all. Basically I had been wearing Tena Lady pants all the time, as \I knew that if I were to need the loo when on the viewing platform , there would be no time to get back to tent and the commode.. BUT Tena Lady don't allow you to open your bowels.. Urine is OK but there is no space for the other.. I had had pains from Saturday but now when I really really wanted to be at the very end... No way ... we had to go back to the tent. I was hoisted onto the commode.. OH Joy, I went . I said Io Anne and Elsa , do go back and watch the end... But they valiantly stayed with me. We heard the end of the concert from our field and drank some wine....

This, in part, may seen negative.. ie re music... but it e

was brill just to be there , listening topeeeeeople.. I know that whilst I dont like eaxh band , it dimply doesny matter, basically Im ok for my values and I enjoyedevery moment of glasro s013

PART 3 HOW TO MANAGE GLASTO WHEN YOU HAVE MND... HOT TIPS !

HUG ME , I'VE GOT MND

GLASTO.. THE FESTIVAL FROM THE PERSPECTIVE OF SOMEONE WITH MND, PART 1

Ok just to explain the title... I'm writing this Blog as a woman with MND, but also as a woman who lives a life.. so you'll get both here the MND perspective and the festival goer persective.

We were supposed to set off at 10:00.. Thursday 27th

I got my night carer to get me up early, at 6:00, to shower and thus have maximum cleanliness for the weekend. I was so excited, I had gone to bed at 2:00...... so was shattered before I started !  But the adrenaline kicked in, and pampered in my Jo Malone I was resting in my riser chair in dressing gown when morning carers arrived at 8:00. I had a small breakfast , dressed and then waited.
10:00o'clock came and I was waiting by the window. My carer was supposed to go but didn't want to leave me.. eventually she had to go at 10:25 to get to her next client and as she went....... the big vehicle arrived.

Richard looked at the actual amount of luggage.. 2 bags ( containing spare clothes but the essentials like: Tena Lady (more later) , and all the bags, tubes, creams, yellow bags and gloves etc,ie  all that one with MND (and diagnosed for 19 months  needs)   also a commode, a standing hoist, mattress for bed , duvet and pillow(never before taken camping before... but this time its different), box of red wine (you aren't allowed glass bottles onto the site).. and no... I didn't take a Teddy !!!

Well it all got loaded, including me in wheelchair.. But no trip is simple.

We first stopped to drop off Jerry dog in Gloucester and Richards bike, he would be going back to stay with his sister in law and be with the doggie..... on to Bromsgrove where cups of tea were provided and we collected Elsa, Anne's daughter who was to be my carer. Elsa is a nurse in ITU and proved to be a wonderful excellent kind caring carer.. but did she blanch when I said,  I do have a DNR ( well, you have to, don't you ?!!!)... she works in the heart ITU..... ? Anyway at least she knew the score.

So we get to theGlasto signs for multicoloured gates.
 I was certain we needed yellow gate but just before then came the red, which said disabled. It took us 15 mins to do the circuit and get out of the circus of the red gate and back in through the yellow gate.

so now all set for simple drive up ! BUT I forgot to say that though we had a vehicle pass, Richard had no ticket, after all he was going back to cycle and look after Jerry dog... OH Dear.. we were sent from pillar to post, eventually a call to our Eavis contact  got us through  ! PHEW!!!

By this time I'm so so shattered and so so shaken as the vehicle bounces everyone ,but in a wheel chair you get a double bounce !!!

OH, DID I SAY IT WAS RAINING ... oh dear Glasto weather..... ?????

On site we were welcomed  with Oh its your bed ( I had had a hospital bed delivered) . The tent went up... well it must have but I was facing the wrong way so didn't see this happen . I saw increasing  rain !

So, like a bride being carried over the threshold, I was eventually let out ( backwards) from the vehicle. ( Sorry to this day don't know what it was except it was largish, grey and rattled!).

The tent was borrowed. It was one of those with semicircle poles and in three sections. One third to sleeping ( two sections), and two thirds to live in... but this area didn't have ground sheet. Anne and Elsa were in one section and my bed poked out from the bed area into the living area.. it was cold.. a first night... What would the health and Safety mob say as we wheeled across the grass in the semi darkness (torch not bright\) with me on standing hoist..... to wake for Friday and the real start of \glasto...

I craved a good nights sleep... but... that was when I found the inexpensive mattress from Argos was inexpensive for a reason... so thin !!

There began a first night of mega discomfort... But a first night looking forward to music and the fantasy that is Glasto...

AND the weather forcast said thatrain would stop at midnight... BUT it stopped at 11:30... an omen ???!!!!

to be continued................

HUG ME , I'VE GOT MND