Sunday, 29 June 2014

Friends arrive unexpectedly

Sitting in bed on Friday the phone goes and our friends who live in Southport are on the line. Not unusual but it was a bit early they normally call me when   they are out eating teacakes at some beautiful spot. Well to cut to the chase they were outside wondering where the car was and I unwitting never knew this and explained Heather wasnt here she had taken the car for servicing. They said they would call back when she got home and cut off. I went back to sleep and they shocked Heather when shen spotted them, we haven't seen each other for almost four years and they haven't been to Thanet for seven years. Imagine the surprise I had when they snuck into my bedroom and woke me from a deep deep sleep. This weekend has been a whizz of doing stuff laughing and reminiscing. I have an appointment with the uroligist tomorrow so they are coming and taking me and if I up to it after  we will go and get a bacon sandwich at Tankerton
I will keep you updated as to what and where and when but for now I am knackered and am going to get some shut eye and listen to a bit of Dolly at Glastonbury.

paddling pool disaster

Our daughter has just been on the phone with two distraught boys the paddling pool has  been punctured. They have three cats so they are prime suspects. I have been on the Argos site and one that has solid sides rather than has to be inflated is 129 pounds. Me thinks I best find a puncture kit.

Thursday, 26 June 2014

Writers Block a win win situation



No one ever gets talker’s block. No one wakes up in the morning, discovers he has nothing to say, and sits quietly, for days or weeks, until the muse hits, until the moment is right, until all the craziness in his or her life has died down. Some unfortunate souls are unable to talk through illness or trauma and I did actually work with a chap who was a selective mute at school until he was eight years of  age. But writers are a completely different kettle of fish they dry up in the middle of a paragraph and then spend sometimes days or weeks before the creative juices start flowing again.
But why? What is the difference between prose and print and why is it so hard to convert between the two forms? I don't know why I am asking you the reader because you cannot explain your thoughts to me thus enabling me to reply to your thoughts  with the full force of my reasoned argument of reasoning as to why I may disagree or in some extreme circumstance agree with your thoughts and conclusions to the extreme. In person we could debate and counter and once over we could retire to our dens and recall the conversations. But  transferring those words onto paper to make them become the written word may not be so easy. As the saying goes there are two sides to every argument and even though you might think the resulting written revue of the said argument would be the same, I fear  you would be far from the truth. Two sides will always result in two stories, winner and looser so to speak. Perhaps that is why the story of war is always written by the winner and never the vanquished.
I have in the past attempted poetry. I say poetry I really mean words with meaning but to someone else the meaning may and most likely is lost. Sometimes it is lost even to me so what chance would anyone have just happening upon a few words hastily transferred from the recesses of my brain onto paper or as is most the more obvious route for my to get written word out there on a computer screen. I can type on a keyboard but am unable to grasp a pen and make eligible marks on a sheet of paper.
The fact I am now disabled with Multiple Sclerosis may be the reasoning behind my need to recall my thoughts and then in turn record them for others to share. I blog I tweet I Facebook and I belong to forums in the vain hope my words  will find homes  inside the brains of others. Is this why we all put pen to paper, in my case metaphorically speaking, and is this why we suffer writers blog I wonder. Maybe deep down we know that what we want is others to read would best be left just there deep down, down in that little space at the back of the sofa of life along with the lost pound coins and hair grips. We know that whatever we write no one really wants to read it!!! all they are doing  is filling in spaces in their day before they actually get round to doing the exciting stuff or if they work for the council may I hazard :-actually do some work. If you ever discover what the exciting stuff is let me know it might stop me writing this stuff and that in turn will save you having to read it and in salesman talk we all get to a win win situation.

Sunday, 22 June 2014

Been in bed all day

Its 10:50pm and I am wide awake, I have  been in bed all day. We went out yesterday and had fish and chips at the beach. Margates not short of beaches I think the Isle of Thanet has nearly 20 miles of beautiful sandy beaches bays and coves and for the last twenty five years our family have had a beach hut on the sand at Westbrook Bay. I hadn't intended going down the steps and onto the sands but four guys offered to lift me in the wheelchair down the half dozen steps onto the sand so I accepted and hey presto I was with my family on the beach, something I cant do that often. My three grandsons were playing in and out of the incoming tide and the sea was as calm as the proverbial Mill Pond. We had a nice milky coffee from the cafe just above us on the prom and the boys enjoyed  ice creams.
Heather's sister was due to join us and bring fish and chips from the chip shop in Westgate so we phoned and added our fish and chips to the order. All set fish chips and coffee on a wonderful sandy beach. She came complete with tomato sauce mayonnaise salt and vinegar. Plates came out of the beach hut and even knives and forks addmitidly plastic ones but knives and forks none the less. I sat there in my eliment surounded by those I love the most at I spot I have enjoyed some marvelous times over the twenty odd years we have had a beach hut at Westbrook.
All good things have to come to an end and trip to the beach was no exeption. Our Son and his girlfriend had people coming and had to leave we recruited a couple of the chaps who had helped get me down and I was  back on the promenade in a flash. We came home and got in doors with help from our son who despite his guests had rushed home with us to ensure I got indoors OK. He is an angel and helps me move around a lot at over six foot he is the tallest and stongest. I was able to watch Wallender and headed to bed at about 10:30 pm and as I mentioned its now after 11:00 I have been busy typing for half an hour and have been here since this time last night. We enjoyed yesterday but we did have plans for today, well they went out of the window at 8:00 am when Heather tried to get me up. I cant get out of bed unaided and this morning I couldnt move at all. We had planned to go and watch number one grandson play football. He was kicking off at 9:30 and no way was I in any fit state to join him so I stayed put. I was fast asleep when Heather returned at just after eleven. I had bacon rolls and coffee and managed a shower. That was possibly a step to far she had to put me in a wheelchair to get me back to bed but at least I had tried even if I couldn't cross the landing with my zimmer. Back in bed I slept and slept and then slept some more. Trouble is it is now 23:31 and guess who is wide awake?

Saturday, 21 June 2014

Multiple Sclerosis and Diet

When I was first diagnosed with Multiple Sclerosis some twenty odd years ago I can remember telling someone in a shop I had been diagnosed with MS. I still remember the reply I got even after all these years. Oh that's not too bad is it "Johns got that and he controls his with diet" I smiled politely and left. I feel I have tried most  things to help me with my MS including diet and nothing has helped. I have Primary Progressive Multiple Sclerosis the one where you get no remission. I have got gradually wore over those twenty plus years. I have met each new stage head on and hopefully with a smile on my face, but getting back to this diet subject how does eating affect MS? Well the answer is officially it doesn't. And I must say I never found any changes to my diet made the slightest bit of difference. I know the MS society have found no evidence that diet can help but they do recommend you follow a healthy diet.
Everyone needs to follow a healthy diet more and more people are suffering from Obesity and there is proof that the body needs a good healthy diet. The body is a complex machine and how it deals with food and drink is very clever but  to my mind one flaw is if you over eat or eat the wrong stuff say fatty foods or nuts or dairy products if you are allergic to them. The allergy thing is close  to me I have a grandson who is allergic to nuts and a daughter who suffer with a dairy products allergy. I suffer from MS so maybe diet is something I should consider. I know some people say the onset alzheimer's can be helped by eating a diet that is fruit and veg based but with no hard and fast evidence I am at a loss as what to believe. Maybe now the prime minister has vowed to defeat Alzheimers us with MS will get some drugs to help with Primary Progresive Multiple Sclerosis

Friday, 20 June 2014

good days and bad days the story of multiple sclerosis

Yep I do have good days, in fact I view every single day as a good day. I used to work with the most cheerful chap and when asked why he was so happy his immediate reply was "your a long time dead plenty o time then for being miserable". So I only do good days and not so good days! T today is a not so good day. I am awake now in bed waiting for Heather to get back from collecting the grandsons from school. I can't get out of bed without her help so here I lay. Whilst waiting I thought I would tell you about last night.
I suffer from reflux a bad type of indigestion heartburn all rolled into one. Last night's episode started as I was reading in bed, I got hot and pains in my chest. I have a very good pain threshold but these hurt. Eventually I called Heather and she gave me some gavescon and went off to make some tea. She returned with tea and biscuits and when I refused the biscuits she knew I was feeling poorly. She then went off in search of a bowl in case I was sick and she returned to her own bed knowing that there was nothing more she could do for me. By now it was 1:30am. and I was tired, no not tired exhausted. I sat the bed up until I was more ore less in a sitting position and nodded off. I woke at 4:50  no longer hot and not felling sick. Great I put my breathing mask on (I suffer from sleep apnea) and got comfortable and went to sleep. And sleep I did, Heather has woken me with drinks during the day and I have immediately gone back to sleep. I am awake now and wanting to get the Day going. Yesterday we had planned a picnic for today that's out of the window now. I need a shower and something to eat. I thought I would share this with you, I expect you have similar experiences but I wanted to let you know your not alone and that a simple blip can write a whole day off.Today has been a not so good day, roll on tomorrow.

Thursday, 19 June 2014

Seen the Multiple Sclerosis Consultant

Kent and Canterbury Hospital 1930's
We got to Canterbury Hospital and had the usual trouble finding a disabled parking space but got tho the appointment in plenty of time. We even dropped my sleep apnea machine off for service before getting to the waiting room. They were running a bit late but we were soon in to see the Neurologist and he had been doing his job he had read my notes and knew not only my recent history but some from the dim and distant past. He wants me to go backnext week and have a full MOT to appraise the way forward. I was diagnosed twenty odd years ago and have run out of drugs to try for muscle spasm but he has asked me to try Gabapentin. I was  pleased with him and was lucky to see him at such short notice (he had fitted me in during his lunch hour) well back to have a full MOT next week more news after that.

Tuesday, 17 June 2014

MS and baclofen pump

My experiences with tizanidine over the last few weeks have made me contact my MS nurse. She in turn has got me an an appointment with a MS consultant, not one I have seen before but the way my movement is disappeared over the time I am just so pleased to be seeing anybody. Even getting out of the wheelchair was a real kerfuffle tonight, and then getting my legs to bend when I actually managed to sit on the stairlift was a real mission. When I last see the physio she had spoke about a baclofen pump. I am not keen but on the up side if it makes my movement better it is a no brainer. What has put me off is the pictures on Google yuk. But I am a big boy and surgery is the least of my problems. I have had baclofen tablets before a few years back and never got much in the way of benefits but the pump delivers the drug direct to the nervous system so less side effects and maximum benefit. As I said a no brained really. I will keep you all posted as to what happens, he may have something else in his armoury or maybe that's just me being hopeful.

Friday, 13 June 2014

Fun Fish and Chips and Donkeys

Yesterday was sweltering hot and I didn't move to far the heat zaps my energy and I tend to sit in the cool with the curtains drawn and fans on. Late in the afternoon two friends called round and we decided to have a ride to Herne Bay and get fish and chips. We all piled into the car and headed of up the Thanet Way to Herne Bay and fish and chips. The women went to get the food and we men sat watching the Gulls foraging for cockles and fly up and drop them to open the shells and they could eat the cockle that thought it was safe inside. I had what Heather told me was skate and chips but was in reality plaice and chips poor girl the sun got to her. Well all four of us sat in the car eating our goodies. Heather had come well prepared Tomato sauce kitchen towels extra salt vinegar and even mayonnaise so we enjoyed our tasty feast and were entertained by the Gulls and all of us are people watchers so fun was had by all.
We headed back towards home and decided to take the long route skirting the Island, Thanet once was an Island cut off from the main land by the River Wansum. But now we are most definitely joined to the rest of the mainland. We went through Margate on to Cliftonville and I could only count six ships so was disappointed my theory that you can always see ten ships was flawed maybe its not always but nearrly always. From Cliftonville we went via North Foreland and I was out voted at going to see the Donkeys at Reading Street so we headed on to Broadstairs in search of Ice Cream. Well Morellis was shut as by now the time was getting on so we headed on towards Ramsgate plenty of bars and restaurants were open but no Ice cream bars. So onwards and upwards I took charge of directions and with the women safely chatting away in the back I directed the course to the Donkeys. We stopped and took some pictures so I was triumphant I had go fish chips and donkeys . We headed back to Cliftonville hoping to cat the sun before it dipped below the skyline. We were to late.
Home it was then for tea's all round and an ice cream from the freezer.
Donkey's by moon light


Thursday, 12 June 2014

Absolute poverty is a lie

I got into quite a debate last night on Twitter about absolute poverty. By the current reckoning any thing bellow twenty two thousand income and your living in poverty. I have always lived bellow the average income and therefore have always lived in poverty. This median line must be retrospective as well as current? So I and my wife have bought up three children bought our own home clothed and fed ourselves put two of the children through university run a car had a phone plus mobile phones computers holidays and nights out yet by the current reckoning I have lived in poverty. Try compairing our reckoning of poverty to a family in a refugee camp ask the child there if we live in poverty? or one of the kids living in the slums of a shanty town in Africa. Would they recognize ours lives as being in poverty, I don't think so.
If Government and the media are being PC I for one don't want to be tarnished as in poverty. Can the people who invent these statistics who by the way are most likely civil servants with great salary and pensions I could only dream of live in the real world. Stop wasting your time telling us how poor we are and do something to help raise standards, maybe by sacking those civil servants I mentioned. That will never happen for every one of those civil servants you actually see there is ten unseen none of which contribute to the economy. They say the welfare state needs reform well so does the public sector, we can accept one man counting paper clips but thousands. They come up with these ideas to find themselves work to justify their existence. Thanks you have branded me as in poverty made me feel really worthless please crawl back into the hole you came from and count your pension benefits.

Wednesday, 11 June 2014

The MS scrap Heap that is Primary Progressive Multiple Sclerosis







I don't often buy a news paper in the week it is just one on a Saturday for the television programme listings book. Yesterday was different I had got up early showered and shaved breakfasted and moaned but had got out of the house for an 11:20 dentist appointment. Well you can imagine my horror when I was informed I was a day early!  The receptionist bless her littllle cotton socks popped to see the dentist who aggreed to fit me in but it might be an hour. I waited and Heather my wife popped off to get me a newspaper and a bit of shopping. Well imagine her suprise when she returned and I was sitting there wating for her to collect me. The news paper was The Times and when I got home I started going through it. The day wound on other stuff happened and I never did read the paper but this morning after a slow start I browsed through it and discovered an entire section on MS 16 whole pages devoted to MULTIPLE SCLEROSIS. How spooky is that? I just had to read what I regarded as my destiny.
Most of it was about the new medicines available now for people  who suffer from Relapsing Remitting MS if only I understood that beast I suffer from Primary Progressive MS and have got progressively worse  over the 20 years I have been suffering from this beast. but there on the next to last page was an article that I could relate to about a girl who in her early thirties had been diagnosed with PPMS. I had been about 38 and yes I am 58 and a moaning old git, it's compulsory to morph into one when you turn 50. The words of the post resonated with my own experiences of being diagnosed my Neurologist had the bedside manner of a house  brick and it appears  thing haven't changed much over the ensuing years. The last few lines really touched the nerve of how I feel about my own situation, it finished with these words
Pretty much sums up how I feel about my PPMS. My GP is a personal friend but he has no idea how I should go forward, I cant get much help from my MS nurse the options are all very  limited. Last week whilst trying to get my hard to move legs to work a little better I was increasing the dosage of the tizanide tablets I had been prescribed. I got up to 10MG daily and they were causing me to feel breathless and eventually to hallucinate. Needless to say I am cutting the dosage back and my legs have not shown any signs of the spasticity going so I am in need of  some help but cant contact my MS nurse. PPMS continues to be the pain that makes my life  interesting but I would walk away from it in an instant and not look back but until the drugs search for Pandora's box is a success it looks like me and all others with PPMS will be on the MS scrap heap.

East Kent MenCap press release


FOR IMMEDIATE RELEASE

LOCAL CHARITY RUNS SUCCESSFUL EVENT FUNDED BY RAMSGATE TOWN COUNCIL
 
A local charity supporting adults and children with learning disabilities staged a very successful event in Thanet which raised £581.88 for its cause.
 
East Kent Mencap ran its 3rd annual Spring Fair and Variety Show on Thursday 29 May at the Red Arrow Club in Ramsgate. The event included a raffle, tombola, craft stalls and refreshments followed by sketches and singing and dancing, all performed by adults with learning disabilities.
 
The event was attended by 125 people including the Mayor of Ramsgate Councillor, Mayoress Ms Penny Webb and Town Sergeant, Mr Terry Major.  Ramsgate Town Council provided East Kent Mencap with £350 for the event, which helped with publicity, staging and props.
 
Comments after the event:
 
Emma Croucher- Drama Club leader:
 
“The group just gets better and better and so proud of everyone involved. The hard work over the last twelve months really paid off.”
 
“There was a lot of audience participation too! Being from Ramsgate myself it was great to see members of the public who we had not met before, come to the venue and support a charity close to home”
 
Tristian Kennedy – EKM Support Worker:
 
“It was a truly great show, our guys are nothing but amazing!”
 
Claire Goldfinch - Chair of EKM Executive Committee:
 
“The show was fantastic! Well done to all performers and crew for their dedication and attention to detail. I look forward to seeing the group at their next panto in December: Beauty & The Beast!”
 
Thanks to Ramsgate Town Council, the Red Arrow Club, the Mayor of Ramsgate, and everyone that attended the event.
 
The money raised will be used to fund East Kent Mencap’s Drama Club which takes place every Thursday at New Gateway House in Margate, from 4pm to 6pm, and costs £3 to attend.  For more information please contact Emma Croucher on 01843224482, or emma.croucher@eastkentmencap.co.uk
 
 
Photographs attached: some of the acts involved with names included
 
 
East Kent Mencap are a local charity which provides opportunities for people with learning disabilities to enable them to achieve the things that they want out of life and to be valued, treated equally, listened to and included. For more info on their work in the community visit: www.eastkentmencap.co.uk
 
 
 
 
 
Paul Wrynne - Fundraising and Communications Assistant
East Kent Mencap
 
Tel: 01843-224482 Email paul.wrynne@eastkentmencap.co.uk

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Working with people with a learning disability, their families and carers
East Kent Mencap- Affiliated to Royal Mencap
Registered Charity Number 220798

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New Gateway House
132 Northdown Road
Cliftonville
Margate, Kent CT9 2RB

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Sunday, 8 June 2014

Beautiful day so going out

Following the successful walk/push at w Walmer we hope to go out again today. Not sure where we will go the world is our oyster as they say. I will take the camera and rest assured you will have some pictures of the Day. I know a fantastic little cafe at Folkestone overlooking the Channel and high up at the top of the white cliffs. Last time there I counted nearly fifty ships in the Channel and we drunk coffee and ate cake. Maybe Folkestone it is then.

Friday, 6 June 2014

New tablets new problems

When I was in hospital last year I was prescribed tizanidine and dutifully took them, well earlier this year I spoke to a doctor, a locum my GP was away and we decided to double the dose 2mg to four. Well earlier last month I saw the MS nurse who was a MS physio and she said I need to Be taking more as 4mg won't be scratching the surface of my spascisty. I am now up to ten milligrams but the sleepiness is knocking me sideways.
I also had to have a blood test for liver function earlier this week. I hope these increased tablets work because the nurse says the next step is a Baclofen pump which injects liquid baclofen direct into the spinal cord. The drug is delivered directly to where it is needed unlike tablets which mess with the rest of the body as well as where you need it. I am unsure of the Baclofen pump it is a big op but to be able to move my legs again, to sit or to get out of bed unaided seems miles away from the sleepy zombie I am at the moment. I know I will probably get over this spell of tiredness but knowing it and it happening are completely different things. I seem to just be getting side effects without the benefits and I am knackered.

Sunday, 1 June 2014

Wonderful walk at Walmer

Red Hot Pokers

snails everwhere

sea view with red hot pokers

one way to Deal the other way to somewhere else
It is only just today, I am writing this at ten past two laying in bed. We had a great afternoon yesterday. Got into the car after a lazy start to the day at about one thirty called our friends from the car and they were already out walking so after getting some diesel we found them and headed out for a ride. We headed towards Sandwich but when we got there the car park along the Quay was shut due to flood defence work so headed on towards Deal. Previously we had seen a footpath at Walmer along by the seashore we wanted to explore and with the Sun out it was the perfect time. We got there and after much debate and visiting and rejecting two car parks decided to go back to the second one. We parked in the disabled bay got the push wheelchair out and followed the flat path onto the shoreline walk. We found a nice concrete path with a signpost pointing to Deal a mile and a half away or the other way pointing to somewhere else. We headed for somewhere else. I did take a photograph of the sign but that is still on the camera and the camera is downstairs. Oh I can't get out of bed unaided and Heather is now fast asleep so I can't actually tell you where somewhere else is or was but believe me it was the opposite way from Deal.
The car park is right opposite Walmer Castle and its ancient Canon were bristling over the banks pointing out towards the sea ready to shoot at invaders but all shipping looked friendly so all seemed safe. Whilst heading towards somewhere we read a few of the inscriptions on the many benches dotted along the route. The pathway and the adjacent cycle path were both being well used I couldn't believe that all those people had  decided to go for a walk at the same time. A bit further along and a short spur headed down toward the sea and there Sat another wheelchair user. Her name was Nina I discovered and I got a severe case of wheelchair envy, here wheelchair has got suspension! How cool is that? Her husband demonstrated it to us bouncing NINA up and down. I did get an offer to try it but declined. Well we returned to the main path which a few hundred yards later (yes I still use imperial measure) I discovered is called Wellington Walk, I took another photograph but don't need the camera I can remember that all on my own without any help. So we carried on towards somewhere else and I took photos of the flowers I am sure Red Hot Poker's are not a native to these shores but many had sprung up along this shore. Well eventually the path to somewhere else arrived at its destination and we turned round to head back. I got another dose of wheelchair envy as Nina headed past in the opposite direction.
We got back to the car park and once I was safely back in the car the women headed of to the ice cream trailer parked in the corner. Scoop ice creams all round mine was a blueberry one and most unusually with scoop ice cream it went down inside the cone, delicious. I stayed put while the others all headed for the toilets in the next door car park. Next stop fish n chips in Sandwich but it's now after 3:00 am and I am signing off. Needless to say the fish and chips were great. Nite folks
Walmer Castle bristling with canons