Posts Tagged With: MS
This post first appeared on Living Like You July 18th 2016
Although we all love our independence – the ability to do what we want when we want – we also all fear losing it. As in all things, there are degrees of independence, and for people with a neurodegenerative disorder like multiple sclerosis, the degree by which we are affected becomes very important.
Our degree of independence not only varies immensely because of our position in life’s cycle, but also with our health status. The degree of disability governs the range of curtailments on one’s independence, and these restrictions can vary from minor inconveniences to major barriers.
We were brought into this world being totally dependent, and as our lives progressed we become less so. In early adulthood, there is a time when we come close to being truly independent, but even that eventually evolves into co-dependence with a partner and then to being depended upon by children. It is the cycle of life.
Throughout our lives, we are all connected with another or with each other. If that were not the case, the world would be an extremely lonely place to be. Love/Belonging is set midway on Maslow’s Hierarchy of Human Needs immediately below Esteem which involves connections with others. These two spots on Maslow’s pyramid are, in my opinion, crucial to the way we perceive independence.
If we are being brutally honest with ourselves, none of us are totally independent. On the other hand, who would really want to achieve total independence– it seems like such a lonely place.
Although we often fight long and hard internal battles before accepting the help of things like assistive technology (AT), tools like these can quickly become an integral part of our lives. Whether a keyboard with larger keys, apps that help us organize and remember appointments, or even tools to help us with our balance , technology can help to prolong our independence.
Why do we value our independence so much? Why are we so afraid to lose it? I think that a large part of the answer is that we do not want to become a burden on our loved ones, our families, or our friends. We despise not being in control, particularly of our own bodies.
I don’t believe that independence is overrated, but it is misunderstood. It is not in our nature to be alone or do things on our own; we like company and often require the assistance of a helping hand when it is offered. If you’re living with MS, don’t be afraid to accept the kindness of others.
This post first appeared on Living Like You on May 11th 2016
It is a beautiful spring morning and the sun is shining. As I sit at my desk looking out the window, I notice one of my neighbours walking along the footpath with his infant son hoisted high upon his shoulders. The scene makes me pause to consider what part I will play in the life of your baby, my first grandchild.
Over the past few months, I’ve had plenty of time to reflect on how my multiple sclerosis will impact my role as a grandparent. Because a granddad’s role is largely ceremonial in the life of a newborn,I think the true differences will really appear with the passage of time.Because of my condition, I know some things just won’t be possible. I won’t be able to hoist Junior onto my shoulders.I will be able to hold and cuddle my grandchild just like any doting grandparent, but I will have to remain seated.
Another job this doting granddad will miss out on is pushing Junior in a buggy or pram, but I certainly will travel alongside whenever the opportunity arises.I will still be there to do the things that granddads do, to buy the things that you and Henry won’t. I will still be there to spoil Junior despite what you say.
I relish the thought of playing with Junior while sitting on the ground; we will be safe there, as neither of us can fall any further. I may experience some difficultygetting back upafter,but to me it will always be a price worth paying. Actually it could be quite interesting watching both of us attempting to stand up. As my mobility decreases Junior’s will improve and in a very short timehe or she will be able to run circles around me!
Of course, there is the matter of the small genetic factor involved in the MS equation. I sincerely hope and wish and pray that that factor will not be a part of my grandchild’s life.But I also know at this point in my life that worrying is a wasted emotion. Qué sera sera!
I know you and Henry will be Junior’sprimary caregivers and educators, but I will have my little inputs.A lot of Junior’s ”firsts” will happen with you two, as it should be, but I intend to be around to celebrate each individual ”first” even if I’m not actually witnessing them. I know it may seem difficult at times, but grandparents want, dare I say need, to be involved. I have no real memories of my own grandparents except for my paternal grandmother who passed away when I was very young. Memories are important.
More than anything, I just want to help. MS will occasionally throw a wrench in our plans, but try to be understanding. I will love Junior with all my heart – MS, a wheelchair and impaired mobility will not change that. MS has taken a lot from me, but it has not robbed me of my ability to love, and we know Junior will have plenty of that.
Love you always
St Patrick’s Day 2016 seems an appropriate day to post my most recent blog which appeared on MS & Me. CLICK HERE
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Multiple Sclerosis (MS) is three times more prevalent in women than in men. Signs and symptoms vary immensely among People with MS (PwMS) to such an extent that it has been said that no two PwMS are exactly the same.
Some men never open up about their MS problems but others are more comfortable doing so and some of the aforesaid men feel more comfortable opening up amongst other men. With this in mind the Southern Branch of MS Ireland instituted MS for Men meetings. We meet in the River Lee Hotel in Cork and over non-alcoholic refreshments for a couple of hours three or four times a year we listen to a presentation followed by a Q & A session. We have had presentations on diet and software development for a physiotherapist-monitored home exercise program. Before the meeting ends we usually discuss the options for the next one and recently we opted for a meeting without a presentation or an agenda; just us and whatever we wanted to chat about.
The get together was attended by about 23 men with Carmel and Patricia as facilitators. As you know I blog about MS frequently with some awkward topics appearing in print so I had never considered the difficulty others may have opening up. One of the lads said that in our group we could say things that would otherwise go unsaid while another said that he felt that coming to our meetings was like meeting ‘his people’.
We openly discussed our personal experiences with whatever medication we were taking, the good effects and the side effects, why people had changed or remained on the same medication. We shared information and being armed with the correct information is essential in our efforts to live as full lives as possible. Some of us talked about how we missed the social interaction associated one particular medication which is administered by four-weekly infusions but the daily oral medications available now more than compensates.
Medication or no medication was brought up and then the issue of whether the search for a cure was genuine or being hampered by big-pharma because MS medication is a huge cash-cow; MS being a lifelong disease as long as no cure is found and PwMS have a normal life expectancy. That’s a lot of money for a lot of years. We talked of the importance of honesty when talking to our neurologists and also the importance of discussing any changes to medication regimes as not all medications are compatible or necessary.
We are very fortunate we have a Functional Zone in Leisure World, Bishopstown which is attended by an average of 85 PwMS on a weekly basis. This section of the gym is supervised by a physiotherapist, all the machines are disabled friendly and as we all know exercise is very important. Exercise, activity and tenacity play major roles in our personal MS jigsaws.
We are a band of brothers and we are stronger together.
Should similar groups be available around the country and the globe?
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After a hearty breakfast in the hotel Jean and I headed for Part 2 of our Valentines Jaunt and so we headed off to Powerscourt Waterfall which is the highest in Ireland at 397 feet. (Click here for further details) There had been some snow overnight and the morning was very brisk and invigorating (in other words COLD). Neither of us was really interested in a trek around the area of the waterfall, well Jean was cold and I wasn’t able, but I think it would a beautiful setting for a picnic on a warm sunny summer day so we admired the scenery for a while, took a few pictures
and headed across country to our next stop, Glendalough.
Glendalough is a monastic settlement founded by Saint Kevin in the 6th century and is run by the Office of Public Works. (Click here for further details) There was still a small amount of snow on the ground so I restricted my visit to the Visitors Centre which is totally wheelchair accessible. The exhibitions are very informative and the 15 minute film which is in an accessible intimate theatre is also very enjoyable and informative. There are a number of specified walks around the area of varying degrees of difficulty available.
I did have a number of issues with the accessible toilet in the men’s area (I didn’t check the Ladies Loo); the emergency pull cord was severed at ceiling height which made it totally useless and there was no drop rail at the side of the toilet bowl. It seems that the emergency cord is regularly pulled and snapped; I suggested that a push button alarm be installed close to the floor as a viable alternative and that a drop rail be fitted.
We headed off again in beautiful sunshine and stopped for lunch in Joannes Cafe in Gorey. Check out her Facebook Page. The cafe is accessible without any difficulty from the footpath. I used my walker to enter the cafe and even though I found that the accessible toilet was accessible I’m not sure how user friendly it would have been in the wheelchair. I suspect it might be a bit tight. We both had Steak Sandwiches with chips and pepper sauce, which were very tasty, before heading for the last leg of our journey.
All in all a thoroughly enjoyable trip.
The Oxford dictionaries define serendipity as “The occurrence and development of events by chance in a happy or beneficial way”. It is difficult, at first, to use the words happy, beneficial and Multiple Sclerosis in the same breath
MS is not good, it is not nice but in spite of this good things can come from it. I was diagnosed in 1988 and I will never know what path my life would have taken without MS so there is no point in dwelling on it. I can only play the hand of cards I was dealt and let’s be honest it’s not a great hand and unfortunately there will be no re-deal.
There are a number of things I am grateful to MS for bringing into my life;
I would never have known how strong Jean, Elaine and Mairéad are.
I would never have known how strong my brothers and sisters and their families are.
I would never have known my friends and fellow bloggers on the MS & Me blog team.
I would never have known other bloggers around the world who can empathise with my blogs and understand where I am on a particular day.
I would never have known the wonderful people in MS Ireland. These wonderful and passionate people are indicative of the vast army of professionals and volunteers who populate the voluntary sector around the world.
I would never have known how fantastic total strangers can be to a fellow human when they see them struggling.
I would never have known so many other People Living with MS (PwMS) who have their own way of contributing to society and living as good a life as possible.
I will stop now and finish with a line that I have used before and will use again. I am strong in spite of MS not because of it.
Christmas without family and friends wouldn’t be the same.
Christmas without decorations wouldn’t be the same.
Christmas without presents, giving and receiving, wouldn’t be the same.
Christmas without mince pies, turkey & ham, spiced beef wouldn’t be the same.
Whether you are religious or not Christmas is a special time of the year. When I was a small lad we used to go to Midnight Mass and in those days tickets were needed to gain entry to the church because the church we frequented could not accommodate all the people trying to get in. We always had a crib at home and Dad would drive us around to a number of local churches to view their cribs in the New Year. We also had decorations and a real tree. The decorations have become much more sophisticated over the years and a real tree is no longer practical for us but we still ‘do’ Christmas. This is our first Christmas in our new home so it is extra special and Jean has done a fantastic job.
I’m not sure whether I ever did as much as Jean in the decorating sphere but MS has restricted my abilities even further. In any event I am quite happy to give my ‘Christmas Genie’ a free hand. She does it all and for that I am eternally thankful.
I would like to wish all my family, friends and fellow bloggers a Happy Christmas; may your lives be filled with happiness and joy this Christmas Season and may your spirit and determination remain undiminished in the new year.
Jean and I headed for Dublin last Tuesday morning for a pre-Christmas, mid-week break courtesy of our two daughters (Elaine & Mairéad) and their respective husbands (Henry and Rowan). For those of you who don’t know Ireland Dublin is our capital city and seat of Government. It is about 2 ½ – 3 hours drive from Cork but us Corkonians believe that Cork is the Real Capital.
By the time we reached the hotel we were both gagging for a cuppa and after check-in we adjourned to the bar to relieve our thirst. The bar has quite an unusual name; the hemidemisemiquaver barand the cheesecake that Jean chose as an accompaniment was absolutely delicious. The public areas are all smooth floored and easily navigable in my wheelchair. There were 2 unusual art installations in the reception area.
We then proceeded to check out our bedroom. It was perfectly spacious and had a perfect en-suite bathroom with all the appropriate hand rails. The shower seat was at a perfect height for me as were the sink and mirror.
The hotel has 12 wheelchair accessible rooms.
We rested a while and then headed down for something more substantial to eat before going to the show. There is a wheelchair accessible toilet located at either end of the bar/dining area.
The food was fine and then we made our way to the 3 Arena, which is only a stone’s throw from the hotel, to see the show. The wheelchair section is on the First Floor and offers uninterrupted views of the stage. There are a number of accessible toilets and the upper floors are serviced by elevators. The old adage that ‘laughter is the best medicine’ is definitely true and Jean and I and thousands of others laughed our way through the two hour show and left in high spirits.
We were glad we were staying in the Gibson as the walk/roll back to the hotel took only moments.
There is Luas Tram Stop at the front door of the hotel and the following morning after breakfast we headed for one of the frequent trams and the short trip to the city centre for a bit of light shopping. O’Connell Street is wheelchair friendly and navigable unassisted if necessary.
We were really only browsing but did pop into a few shops for a look around. We yielded to temptation in Arnotts and had a cuppa and a cake. Not having bought very much we decided to call it a day and headed back to the hotel and a after a brief rest we headed over to Stillorgan to Anita and Jim’s home for a bite to eat and a catch up.
I know that it sounds as if we ate and drank our way through our short break but we really didn’t. Thursday morning came around and after check out we headed home and thankfully arrived safely with our batteries still fully charged from the inimical Mrs Brown and her Boys.
5 Accessibility Stars to both
The Gibson and The 3 Arena.
5 Laughability Stars to Mrs Brown and the Boys
Designated Disabled Parking Spaces and the abuse thereof has long been a source of controversy. The spaces are frequently occupied by thoughtless/selfish people with no right, they are frequently occupied by the ‘I’ll only be a minute brigade’ and badges are being used by ineligible people.
Before we consider a solution, it is necessary to understand why the problem exists. Designated Disabled Parking Spaces are the most coveted spots in any car park; they are the closest spots to the entrance doors and are also wider than the usual parking spots. The main reason they are designed this way is to make life less difficult for people with mobility issues. The car door may have to be fully open for a disabled person to get into or out from a car or their wheelchair may need to be placed at the side of the car for the person to sit in immediately on exiting the car. The parking spaces are located close to the entrances so that a disabled person can get inside as rapidly as possible particularly in inclement weather and let’s be honest Ireland has more than its fair share of bad weather.
There is also the issue of ineligible Blue Badge Holders and in my opinion these are the worst offenders of all.
Remember that it is not a prerequisite that a person uses a wheelchair to legitimately use the parking spaces. Some disabilities are not readily visible. Some people can only walk a short distance without fatigue setting in and it should be remembered that whatever the distance walked from the car it is the same distance back.
I would like to see these parking spaces being better policed. I would like to see Traffic Wardens and the Gardaí (Irish Police) check the badges when they see a person alighting from or returning to a car in public areas. Legitimate badge holders should not be embarrassed as identifications are often checked and this would be no different. The policing of these spaces is a different matter on private property but they should be monitored in a like manner by whatever security is employed.
P.S. San Diego are increasing parking fines for illegal use of these spaces to $740 (Click Here) and a judge in County Clare put a driver off the road for 6 months (Click Here) plus a fine of €500 for illegally parking in a designated parking space for sheer convenience – the ‘just a minute brigade’
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“You have Multiple Sclerosis (MS)” said the doctor, as he sat with his fingers steepled under his chin at the opposite side of a grey, impersonal, metal desk. This bombshell was dropped on me after four days of extensive tests. The four days had crawled past so slowly that it seemed time had stood still. The longer I remained in hospital my position seemed to become more precarious.
“You have MS” said the doctor and my world crumbled. The year was 1988 and he told me that there was no cause, no cure and no treatment. I was on my own.
“You have MS” said the doctor and I knew that I had a really difficult job on the horizon; I had to tell my wife what the doctor had said. She had anticipated the diagnosis and was somewhat prepared. We hugged and we cried and we hugged and we cried and railed against God and the world for a number of days and then like a sail ship without wind we were becalmed. Shortly after that our wind rose again, we left the doldrums and resumed forward motion. Life goes on.
“You have MS said the doctor” and I looked at him with horror and terror in equal amounts etched on my face. It was just another day at the office for him. He hadn’t tried to ‘gild the lily’ to soften the blow. The sentence was delivered in a cold manner of fact way with little or no regard for the recipient, me.
“You have MS” said the doctor and I knew that my family and friends would be devastated but they had to be told. I knew some of them would be stoic in their acceptance of my news and others would not. I was correct
“You have MS” said the doctor and I knew my life would never be the same. It had changed irrevocably and I would have to get comfortable with a new ‘normality’. I would have to get used to the restrictions that MS would place on me but at that time I did not know what form those restriction would take. I was facing into the great unknown, facing a journey that had no roads or even informal pathways.
“You have MS” said the doctor and I thought I was on my own to navigate this tortuous journey. I was wrong, so wrong. My family, both immediate and extended, rallied to my side. They surrounded me with love and understanding. They did not force their attentions or help upon me but I knew that they were there for me whenever I would allow them into my world.
Blogging has been the key that opened the door to my MS world and I am grateful that I discovered blogging. It has opened a new world for me and if my experiences can help one other person I will claim that as a positive result.
I am strong in spite of MS not because of it.
There is no map to where I am going. No one has travelled the exact same road on which I travel, although more than 2.3 million people in the world are making the same journey at this moment in time. No map exists; even with that huge number of travelers, each road has its own twists and turns, humps and hollows and more than a few cul-de-sacs.
This journey is not planned, it is thrust upon us. We have no say in the matter and we have no control. It is like a giant fairground. It has roller coasters – thus the humps and hollows. It has carrousels – thus going round in circles, getting nowhere. It has dodgems – thus all the bumps and knocks. It has a giant lottery wheel – but no prizes are allocated. It has a ghost train and as we travel on the train major obstacles and scary things pop up and frighten us.
The road is a one-way system. Actually it is more like a train running on invisible tracks through a continuous tunnel with no light at the end.
But wait, is that a pin prick of light I see? Has the train slowed? Have I noticed some people disembarking? I shout gleefully that the answer to all three questions is yes, yes and yes.
This is the Multiple Sclerosis (MS) journey and thanks to major research breakthroughs, that pinprick of light has appeared and it is getting brighter. Returning to the train analogy medications are now available that slow its progress. Hope has appeared on the horizon that the train may be stopped dead in its tracks and sometime in the future I hope that the train station will be closed and no more passengers will be allowed on board. One day I hope to be able to announce that MS is a thing of the past and has been consigned to the medical history books.
I hope to be able to say “I had MS”.
You would have to be living on a desert island without any means of communication if you are not aware that Christmas is coming. The Coca Cola advert has been running for some time, the new Cadbury’s advert is on the TV regularly and the Budweiser Clydesdales are coming. It is a time of year that I love but at the same time face with a degree of apprehension, dare I say, fear.
There is such an amount to be done; presents, decorations, parties and for people Living with MS, who have a finite amount of energy, planning is crucial to enjoy ‘the season of goodwill’ to its maximum. I count myself exceptionally lucky that Jean is a Christmas person from head to toe. She loves it. If Christmas came twice a year she would still love it. On top of loving it she is the most organised person I know. She makes her list, she checks it twice and to her it really doesn’t matter whether you’ve been naughty or nice; if you’re on her list you’re getting a present. The Christmas card list is treated with the same excitement. Jean gets the tree and dresses it and ‘decks the hall with boughs of holly’. This is one of the many reasons I consider myself so lucky; Jean does it all with the exception of my present to her and a few small presents to the girls and their husbands.
Not everybody Living with MS is as lucky as I am so Christmas needs careful planning. Going shopping without a plan is like going fishing without bait; you will have wasted a lot of energy and caught nothing. “Fail to prepare. Prepare to fail” Don’t be afraid to ask for help, your family and friends will be willing to help, all you have to do is ask. I believe in asking people what present they would like, except for the surprises. That is the way to avoid wasting energy and the recipients avoid the disappointment of getting a present they didn’t want.
Outings at Christmas are another consideration. Remember energy is rationed. You cannot borrow from tomorrow. Well you can really but the penalty is always extreme and rarely worth it. Don’t be embarrassed about taking a nap before going out, nor should you be embarrassed about leaving before the party ends. People that know you will understand. Happy Christmas to all my friends.
Munster played Treviso in the Champions Cup on Saturday November 14th in Thomond Park (Click Here) and we were there. The four of us, Declan, Jean, Elaine and Henry, headed for Limerick on Saturday morning after Josh had been kennelled. The journey was uneventful except for the usual hotspots of Buttevant and to a lesser extent Charleville. The weather was poor and on arrival at the Limerick Strand Hotel (Click Here) we opted to stay in and stay dry before the match. Teas, coffees, scones and paninis were ordered, delivered and consumed in the Terrace Bar. The toilet facilities, which include 2 wheelchair accessible toilets, are situated one floor below reception and are accessed by elevator. We inspected our rooms and were more than happy with the accommodation.
We headed off towards the stadium which is only a few minutes from the hotel. There were no major inclines to make life difficult but one badly parked car did not make life easy. My companions shared the ‘driving’ duties as I was having a lazy day. We reached Thomond and went for a look around the museum which was informative but still growing as Munster Rugby grows in history. We managed to down a few drinks and hotdogs before taking our places. The weather was deteriorating with a swirling wind accompanied by cold wet rain.
Thomond Park is very accessible and the 5 star accessibility rating I gave it last year still applies.
Munster won the game in poor conditions and by the time we headed back to the hotel the wind and rain had died down. The wind and rain started up again after we got back to the hotel so we decided to stay in the bar and refuel while a musician kept us entertained. The food was fantastic. The only negative that we could apply to the hotel was the music/noise reaching our rooms on the first floor. I would not recommend rooms immediately over the bar area.
On Sunday morning we headed in to Limerick city for breakfast in The Buttery, Bedford Row (Click Here). Accessibility is fine but there is a small step at the entrance door and circulation is good. I didn’t check the toilets and after a scrumptious breakfast we headed for home.
Limerick Strand Hotel –
5 Accessibility Stars
Thomond Park –
5 Accessibility Stars
Happiness is an inside job.
A friend of mine, Eleni Politi, sent me a poem recently that got me thinking and for that I say thank you Eleni.
Is it nature or nurture? I have heard that question asked innumerable times and more often than not the question refers to badness within people; most often after an horrendous crime that people cannot understand.
The same question can be asked of positivity/negativity and happiness/unhappiness. Is it nature or nurture? Why are some people better equipped to deal with adversity? Is it nature or nurture?
Adversity, in the form of Multiple Sclerosis (MS), has been part of my life since 1988 and my family and I have learned to deal with it on a daily basis. We have learnt to cope. Is it nature or nurture that helps us through, that keeps us going?
I believe it is a bit of both but I also believe that without the wholehearted backup of family and friends in times of adversity that that feel good factor can be swept away in a torrent of negativity.
We must learn to deal with adversity and recognise when we need help and our family and friends must learn to recognise when we need help but most importantly they must learn to recognise when we are willing to accept help; it is not enough to recognise that we need it. Sometimes stubbornness/pride can restrict our ability to accept help. The needing of help and the willingness to accept help rarely arrive together. Please be patient.
Happiness is an inside job. Positivity is also an inside job but neither can last without nurturing. Firstly we must learn to be nice to ourselves and be nice to others. The main tenet is to treat others as you would like to be treated. Empathise. Look at things from different perspectives. Be less critical of yourself and others. Don’t play the blame game. Worry is a waste of emotion and can never be totally eliminated but it can, and must, be controlled.
Live long an prosper.
It all started with an email I received on Monday 28/09/2015, from Multiple Sclerosis Ireland, offering the winner of a competition 2 tickets to Ireland v Italy in the group stages of the Rugby World Cup in Olympic Park, London. The competition involved a question concerning none other than Brian O’Driscoll and his record number of World Cup tries (Keith Earls broke that record on Sunday). I replied with the relevant information and much to my surprise and incredulity I won. It was then that the mad scramble began in earnest; airline tickets, accommodation, an appropriate green jersey and most importantly someone to accompany me. Travel = Ryanair to Gatwick – sorted, Accommodation = Jurys Inn Croydon – sorted, Green Jersey = Lifestyle Sports – sorted, Elaine Sheehan = Travelling Companion – sorted.
Since this is a blog site mostly about accessibility let me say that all sections of our journey were accessible. Olympic park was constructed with accessibility a major consideration. The tube was accessible without help and the over ground railway was accessible with a bit of help but that help was always close by. Jurys Inn was also accessible but we didn’t have time to do a full look around.
Excitement had been building for a few days and when Sunday morning eventually crept over the horizon at last it was time to head to the Cork Airport for the first leg of our journey. I was like a child fidgeting with excitement – are we there yet, are we there yet? We landed in Gatwick Airport and transferred to a train to Croydon and on to our hotel. Back to the station to discover that the elevator to Platform 4 was not working. Momentary feeling of dismay. An alternative way down was via another elevator to Platform 1 then a push up a big ramp and back down the other side to Platform 4. Elaine was brilliant. On we went to London Bridge where we transferred to the Tube. We were seriously pleased that the elevator was operating. Wow it’s a long way down to the Tube platform. We carried on to Stratford Station where the pre-match excitement was really palpable. We were making our way to the exit when an English gentleman, a very perceptive gentleman, approached us and asked whether we were going to the match and if we were would we like a spin? There was a fleet of custom fitted mini buses operating between the station and the stadium which was operated by volunteers and it was free. We loaded up for the short trip to Olympic Park.
Unfortunately The Orbit had closed by the time we got there but I would have loved to get a ‘Bird’s Eye’ view from the top. A return visit has gone onto the bucket list.
The Fan-Zone was accessible albeit with a bit of hard work on the grass. The area was a mass of green jerseys and food and drink was plentiful. The atmosphere was building up and we watched some of the Argentina v Tonga match on a huge screen while we had a liquid and solid lunch. Then we headed for the stadium.
There were absolutely no accessibility issues getting into or around the stadium, as I said accessibility was a major consideration when the Olympic Park was being planned and built. Henry told me that there are over 300 wheelchair points and all have uninterrupted views of the pitch. Accessible toilets are in a number of locations around the stadium.
After the match was over, WE WON, we headed back to the shuttle buses for our return journey to Stratford Station and back to Croydon. The tube from Stratford was absolutely packed but Elaine managed to find a spot for us.
And so our truly memorable weekend was coming to an end. More food and drink in Jurys Inn but with the added company of Mairéad and Rowan. Monday morning we headed back to Gatwick Airport and then on home.
Here is a link to a blog on the Dorsett Hotel – sounds 5 Star. Yes they have wet rooms.
Click HERE for the hotel’s own website
There are very few people alive in the world today that remember the end of World War II and even fewer that could remember its beginning but I hope that many of you will remember the history of WWII and the preceding years. History shows us how Hitler tried to conquer Europe, his initial successes and his ultimate failure and destruction. This may seem strange at first sight but MS and the Third Reich have many similarities. MS and WWII are like dizygotic twins, alike in so many ways but also completely different.
Hitler started by taking control of Germany, he slowly moved into Poland and followed on by taking most of central Europe. He was unpredictable in his strategy. The allied forces yielded a lot of ground in the initial stages but when our Americans allies came fully on board the tables started to turn and Hitler was eventually routed.
I think that Multiple Sclerosis starts off like WWII. It usually starts off with small attacks; symptoms like tingling, loss of balance, lack of energy become apparent and then slowly get a grip on our bodies. It buries itself deep and takes root and is unpredictable as was Hitler. As it gets emboldened it targets our eyesight, our mobility, our cognitive functions and our independence. Not unlike how Hitler took Central Europe. No one knows where it will target next. It is totally unpredictable as was Hitler. MS is engaged in a major battle with our bodies as it tries to exert its unstoppable destruction of our myelin sheath and ultimately us. Hitler had few allies but counted Mussolini as one. MS has few allies but if an infection gets into our bodies MS will use it to achieve its stated aim to destroy us; all very similar to WWII.
The allies are now lining up to assist us in the battle and their resources are huge, they are immeasurable. Our allies are the medical research teams but also people like George Jelinek and Terry Wahls with their dietary sloutions. As Hitler suffered small defeats leading to larger defeats and his ultimate demise MS is now suffering such setbacks. Medication to slow the progression of the disease is now readily available and there are many more in the pipeline. Research is being undertaken like never before, new treatments are becoming available and hope is beginning to shine its powerful light in our direction. It is so like the beginning of the end of WWII. The forces have gathered at the beach heads and the heavy weapons have been deployed but the targeting system has not yet been perfected.
Just as Hitler was defeated MS will also be defeated. The only issue is when? How much longer will it take? How much more pain and suffering will be inflicted on people living with MS, and their families, before the disease is finally wiped out? When will all this happen you ask? I can’t answer that just now but I firmly believe that with the massive resources that are available MS cannot withstand the onslaught that is being unleashed on it. It is just a matter of time and when that day comes I will be able to say “I used to have MS”.
You have all heard of the imaginary ‘slippery slope’, you know the one where it starts at a gentle gradient and gets steeper and steeper and your descent gets faster and faster. You go further down and soon the bottom is visible and you know that it will take Herculean efforts to stop the slide and even greater efforts to raise yourself off the floor. This can be real problem for people living with Multiple Sclerosis (MS) because for some physical strength is compromised and for others there can be cognitive issues and life becomes really difficult for those who have both. Relapsing Remitting Multiple Sclerosis (RRMS) is the most common form of MS and accounts for about 85% of initial diagnoses. Relapses vary in intensity, duration and degree of recovery. Shorter relapses rarely pose a major problem for me, after all MS has been part of my life for more than 27 years.
MS does not have total control over my life but it occupies an important place and whether I like it or not it is in the mix when any important decisions need to be made. MS is a particularly vindictive family member and when things seem to be going too well, or she feels ignored, she pounces in the form of a relapse and the severity and duration of the relapse is governed by how peeved she feels. I feel that she is standing right behind me at the top of the slippery slope and is only awaiting her opportunity to launch me on a downward spiral. (Ladies, no insult intended when referring to MS as ‘she’.)
My slippery slope has two parallel tracks; one track is my mental attitude and the other is my physical ability and both are interlinked. By nature I am extremely positive but I find it is impossible to be positive all the time and when my positivity slips a little I suddenly realise that one foot has taken position at the top of the slippery slope. Once one foot takes position on the track it becomes difficult to keep the other off and when both feet are on the slope there is, unfortunately, only one direction of travel and that is down.
Positive mental attitude and physical wellbeing are essential to maintaining a position at the top of the dreaded slopes and keeping MS at bay. There are a myriad of signs and symptoms associated with MS. Cognitive dysfunction is one of them; the ability to think and/or concentrate for long periods of time may be compromised, hence the difficulty for people living with MS in keeping a positive mental attitude. I don’t believe it is depression but if not addressed early it may develop.
Physical wellbeing is of co-importance with a positive attitude and some form of regular exercise is important. It is when you least feel like exercising that you need it most. Exercise need not be pumping iron in the gym or training to run a marathon. The biblical reference to the ‘widow’s mite’ comes to mind and thus the need to tailor your exercise regime to your physical limitations. Start with short exercises. One or two minutes a few times a day to begin with and graduating to longer times. Endurance is more important than resistance. As your physical wellbeing improves so will your mental attitude. It is the reverse of the slippery slope but you go downhill much faster than you get back up. Getting off the damn slope and resuming your place at the top of the slope is difficult but it is worth all the effort. Nothing about MS makes life easier but we owe it to ourselves, and our families, to keep trying and not to lie down before the awesome destructive power of MS. The Munster Motto “Stand up and fight” has become my motto.
It is easy to understand how we falter and go downhill. It is impossible to stay positive and focused all the time and one lapse is enough to start the slide which once started is difficult to stop. Believe me when I say that whatever effort is needed to reverse the decline it is worth it. I know. I have been well down the slope and fought my way back up, maybe not quite to the top but close enough. The view from high up is far better than the view from the bottom.
Relapses can be of long or short duration and of varying degrees of severity. It can be difficult to know when one starts and even more difficult to determine when one stops. I have looked back on some of my more recent blogs wherein I accepted that my MS was progressing but I have now decided that it was just a prolonged relapse. Thanks to Jean and all my family and friends for sticking with me and helping me through it. You may not know that you helped but you did. Thanks to MS Ireland (Click HERE)and particularly the Cork Branch for my Gym Buddy and the Leisure World Functional Zone programs. Now that my physical condition is improving my mental attitude is also improving and I have reversed the slippery slope. I am on an upward spiral.