Make Hay While The Sun Shines

My life is good at the moment in fact it has been good for a while now but I know this will change; it’s not IF this will change but WHEN. I’m not fatalistic I’m realistic.

I am enjoying my ‘up’ time immensely. Jean and I have done a lot together recently. We’ve been to Brighton and Berlin, the Pro 12 Final in the Aviva and Dáil Eireann over the past few months and being honest I couldn’t have done them without her.

We both know that MS can rear its ugly head at any moment and without notice.

I have undertaken a personal project at home; we moved in here 2 ½ years ago and it is only recently that I felt physically able and motivated to clear out the shed, to prepare my ‘Man Cave’. Even though the shed is not big the clean out has taken a few weeks, which in MS time isn’t that long, but it isn’t quite finished yet. A run to the dump and another few hours will see it complete. An old farming adage is my guiding tenet at the moment; “make hay while the sun shines” and when translated into ‘MS Speak” it simply means “do it today because you may not be able to do it tomorrow”.

We both know that ‘tomorrow’ will come maybe not exactly tomorrow but someday.

There was a slight dip recently when the uninvited and unwelcome Mr Unthoff came to visit but thankfully he didn’t stay long. The weather over the past few days was not officially a heat wave more like a ripple but it took a lot out of me.

My Multiple Sclerosis (MS) seems to have taken a back seat for the moment and hopefully will stay back there for a long time. MS has been part of my life for more than 29 years and has left its marks and scars where they can’t be seen, except with an MRI scanner. Those marks and scars have placed limitations on my life but I have learned to live with them. MS has not gone away; it never will. It is just waiting in the shadows for the opportunity to pounce and re-impose old restrictions and maybe introduce a few new ones.

Life is good. Of course good is relative and I still have pains and aches in various parts and I am less able than I was a few years ago but I have learned to work within my limitations. My ‘time window’ for getting ‘stuff’ done is short and any effort to extend the time will be met with staunch resistance. MS is unpredictable and I celebrate the good times and every achievement and live in the here and now. Change will come but I will deal with it then.

This blog is not about boasting about how good I feel at the moment when I know of so many other People with Multiple Sclerosis (PwMS) whose disease course has been much more turbulent and destructive than mine. It is just to say appreciate the better times when they arrive and deal with the less good ones when they follow. “One day at a time”.

I know that when this good period is over, which I hope will not be any time soon, I will be less able; so I say Carpe Diem and MAKE HAY WHILE THE SUN SHINES.

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#StrongerTogether #WeAreIreland

I was delighted when asked to make a contribution to a publication by Multiple Sclerosis Ireland (MSI)/Novartis on the Quality of Life (QoL) of people living with Multiple Sclerosis (MS) in Ireland (Click Here For Full Report). It was a further honour to have been present at its launch in Dáil Eireann on May 31st, World MS Day. Quality of life is classed as an intangible cost and it is difficult to assign a cash value to it but using all sorts of mathematical wizardry a value was assigned and it equates to 20% of the overall annual cost of MS.

My friend and fellow blogger Aoife Kirwan gave an impassioned and inspirational talk on the issue (Click Here). Please take a few moments to read it in full before you read anymore of this post.

I had the same worries and fears when I was diagnosed in 1988 as no treatments were available and I often wonder where I would be today had I started medication then. On the day of my diagnosis my neurologist said “You have MS –there is no cause, no cure and no treatment”. It was 10 years later after getting a second opinion which confirmed MS that I started medication. Unfortunately, the cause is still unknown and without understanding the cause a cure is nigh impossible to find but treatments are now available.

This infographic shows the societal cost of MS in Ireland and to my way of thinking it is a no brainer to do everything possible to reduce the 50% indirect cost and the 20% intangible costs and if that means incurring extra costs in the short term, so be it. Things have changed somewhat since 1988 but there is a lot more to do.

It is likely that the direct costs will increase but the benefits will far outweigh the extra cost; there will be a decrease in indirect costs and an improvement in the QoL of people living with MS (PwMS). It is a win-win situation.

Professor Gavin Giovannoni of Barts, London (Click Here) believes that early treatment is the key to successful treatment, a view which is widely, but not universally held. I am also a believer. Many people have shunned the pharmaceutical route and opted for dietary or alternative remedies as is their right, and some have been successful.

Remember, we are Ireland and we deserve every chance to live our lives to our fullest potential. Remember, we are Ireland and we would like to be productive members of society for as long as possible. I’d like to thank Aoife for her use of the phrase in her powerful address to the members of the Oireachtas.

#WeAreIreland #StrongerTogether

Do you use medication or an alternative in your battle against MS?

Accessible Brighton 2017

Brighton Blog

The boarding at Cork Airport was slow and disembarking at Gatwick even slower; I was the last on and the last off. Brighton is about a 25 minute train ride from the airport and all the staff members were excellent. We stayed in the Premier Inn (Click Here) on North Street which is about 10 minutes from the station and only a very short distance from everything. This was another family trip – The Magnificent Seven back together again; we were in Spain together last September.

The hotel reception, restaurant and bar are located on the first floor which is serviced by 2 elevators. There is ample circulation space and a functional and accessible bathroom off the dining area. The Premier Inn chain (Click Here) has accessible bedrooms but each venue should be checked for individual needs. We had reserved an accessible room and it was exceptionally spacious but the bathroom was a bit of a let-down as it had a bath instead of a shower and baths are difficult for me but it was well appointed with a low level sink and an array of grab rails

Our Bedroom

Our en-suite bathroom

Over the few days we rambled through The Lanes, old Brighton with Dickensian laneways, where we visited the world famous Choccywoccydooda (Click Here) and had a cuppa in The Plant Place. We had a light lunch in The Little Shop another day. The lanes are quite narrow and prone to pedestrian-congestion but have a large number of shops. The area is a bit hilly but manageable.

Choccywoccydoodah

Brighton Pier (Click Here) is very accessible and well worth a visit. There is a wide variety of things to do including games arcades, rides, pubs and places to have a bite to eat. Jack won more than 1,100 tokens on his first attempt at a gaming machine; a game of Paw Patrol. Jellied Eels were available but Jean and I exercised self restraint and declined.  Staff members keep a sharp eye on the Disabled Toilet to minimise abuse. We travelled on BA 360i (Click Here) which is vertical ride reaching 450 feet into the sky giving panoramic uninterrupted 360⁰ views of Brighton. There is a clean and spacious Disabled Toilet in the terminal building. SeaLife (Click Here) aquarium is also worth a visit and is totally accessible. The main entrance is accessed by a considerable number of steps or via an underpass from the Pier side; my only criticism of the underpass was the awful stench that pervaded the area from entrance to exit. Improvements to the extensive promenade are ongoing and probably will be for a number of years to come but it is still accessible.

Approaching the Pier

Collecting Jack’s Tokens

Inside Sea Life

I was a bit tired the first day so the gang went to a nearby Mexican restaurant, Wahaca (Click Here), and spoke highly of the food. We had a light lunch the next day in the nearby ‘All Bar One’ (Click Here) which is accessible with a stair lift to the mezzanine floor where the accessible toilet is located and the food was great. Al Duomo (Click Here) an Italian restaurant was the setting for our big dinner; the restaurant is accessible and the food and staff fantastic. I didn’t check the toilet facilities. Henry, Rowan and I visited the Colonnade Bar (Click Here) which has a large step at the front door and the toilets are down stairs. However it is a lovely cosy, old fashioned bar and worth visiting when attending the theatre next door.

We visited Churchill Square Shopping Centre (Click Here) which is new and modern and much the same as all modern shopping centres.

We noticed that many of the buses were named after local people which we found a bit bemusing albeit a nice recognition of deceased local people who had made a “significant contribution or had a strong connection to the area in their lifetimes”.

We booked an accessible taxi for the trip back to the railway station and then our onward journey home. All-In-All a five star experience

My MS Journey

This is the link to my latest MS & Me post.

Cork University Hospital

I was an inpatient in Cork University Hospital (CUH) for a week in August 2016. I recovered fully thanks to the excellent medical care received. This post is as a result of the poor facilities in the bathroom attached to the ward in which I was resident. It is a critique on bad planning and design and poor feedback. I wrote to the relevant authorities on August 22^nd detailing my concerns and received a prompt reply informing me that the matter would be investigated and I would receive written details of the investigation early in October.

As I write this, on December 4^th, I have not received the promised written details of the investigation despite writing again in November. I have received a number of telephone calls, which were actually return calls, detailing what action is proposed and promises of the letter. The proposed action is what concerns me and what finally prompted me to pen this post.

The photographs below describe my concerns;

No emergency pull cord or vertical grab rails in shower cubicle

I can’t even see my forehead whilst sitting

Emergency call button above toilet roll dispenser and no drop rail to assist standing

Another HSE facility with a drop rail in place

the emergency call button at the toilet section was approximately 4 feet off the floor and there was no drop rail; there was no emergency pull cord in the shower area nor were there any vertical grab rails; the mirror is wrongly placed to facilitate shaving while sitting in a wheelchair. I have been told that when the refurbishment is complete the emergency button is to remain in the same location which is absolutely ridiculous. There was also a discussion as to where a cord/button could be placed; near the bowl or the sink? Falls can happen anywhere and the alarms should be in the most likely places.

Below are a number of areas with emergency alarms close to the ground and also at a higher level. It can be done. Where there is a will there is a way and patient safety should be of paramount importance.

Irish Rail Washroom with button off the ground

Irish Rail with the emergency button near the ground

Gatwick Airport with long emergency button near the floor

Gatwick Airport with emergency button near the bowl

Design and safety is not a new and should require little discussion particularly in a large organisation with numerous examples but it may be a good idea to ask service users for an opinion, dare I say advice.

What do you think?

 

The Flying Enterprise

We were at the Flying Enterprise on Friday evening for a meal and a chat and maybe even a drink or two. Who are ‘we’ you might ask and I will answer that later.

Group Photo

The Flying Enterprise (Click Here) is very accessible, tiled floor and no awkward thresholds, and the staff are friendly and accommodating. 11 of us had a meal and drinks but mostly we chatted among ourselves. The food and the service were both excellent. I have no hesitation in recommending it. The accessible toilet was exactly that, accessible and clean and neat and tidy. An extra few people joined into the group after the meal was finished. A limited amount of on street parking is available nearby.

Accessible Toilet

Now back to the question of “Who are we?” We are a small group of people living with MS in and around the greater Cork area. This is a group of individuals who happen have Multiple Sclerosis as a common denominator. It is not about comparing notes and signs and symptoms but neither is it about ignoring the reality of MS. It is a social group that was started about 2 years ago and was originally a group for the newly diagnosed but has gone from strength to strength since its inception.

Please feel free to leave a comment.

A night out and the morning after

I’m not sure why I wrote this but it was weird this morning, not freaky, just different and since I haven’t posted a lot recently I decided that this would be a reintroduction of myself. I wanted to share some of WWW.MS.DG (Weird Wonderful World. Multiple Sclerosis. Declan Groeger)

My internal clock has 07.00 indelibly etched after a number of years taking a pill at that time every morning, a time of my choosing, and which must be repeated around 12 hours later. It really is not a hardship as I have my best hours in the morning; my energy levels slip a bit in the afternoons and evenings. Sometimes, like this morning I want a lie-in but my internal clock insists on telling me it is 7 o’clock and time to get moving.

You see last night we went for a meal and a movie with 2 of my brothers and their wives; Martin & Mary, Kerrie & Bríd and Jean & Declan. Let me set the scene; the movie was produced by my nephew Fionn and it was being shown at the Indie Cork Film Festival so it was a must see for us and a yellow rain warning was in operation for Cork. We arranged to meet in Luigi Malones for a bite to eat before the show. It was raining pretty heavily by the time we parked the car and we got our first wetting getting from the car to the restaurant. The food was up to Luigi Malones usual high standard but the accessible toilet was a major let down. It is tired looking but it is roomy and functional. It really needs a makeover. Our second wetting came while returning to the car and our third and final wetting came while we were moving from the car to the cinema by which time the rain was absolutely torrential. The film “Twice Shy” was directed by Tom Ryan and produced by Fionn Greger; it is topical and well worth watching if you get the chance. The rain had stopped by the time the film was over and it was well past my regular bedtime by the time we got home. The Gate cinema is wheelchair accessible with an elevator to the upper floors with 3 designated parking spaces adjacent.

I, and others living with MS, find that having a regular bedtime helps in getting a good night’s sleep and since I was late going to bed I decided to have lie-in in the morning. My alarm shrilled at about 07.00 and I turned over and took the pill and rolled back again. I slept but not a deep sleep and at 08.30 I was lying there thinking that I should get up, I will get up, I must get up, I want to get up. I wiggled my toes and did a mental check that everything was working and when I discovered that everything was fine I said I must get up, I should get up, I can get up but I didn’t get up and I don’t know why; I just lay there thinking about getting up but refused to act. This was MS brain at work. I wasn’t tired or cold, I was warm and rested but I just lay there and then at 08.45, without any warning my legs swung out of the bed and I found myself standing upright and ready to take on the world.

Is there a point to this story? Not really. I’m just saying that after a not very late night my head was in a different place when I awoke. I am now back to being supercalifragilisticexpialidicious sitting inside with beautiful sunlight shining in the window writing this.

Command Central

View from Command Central

Please don’t stop asking me to partake in different events. I may not be able to do them all but please let it be my decision. Borrowing Spoons has never been a problem for me and once I keep the number low pay back is not too difficult.

Puerto De La Duquesa Sept 2016

Puerto De La Duquesa, Spain has been my favourite holiday destination for the past 15 years. Truth be told we rarely  go anywhere else; we are aware of its shortcomings but more importantly we are comfortable with the facilities. This was a different holiday for us as we have grown to a family of 7 and we were all together. Elaine, Henry and Jack along with Mairéad & Rowan and then Jean and I brought up the rear. Jack, at 12 weeks old, was on his first holiday and had his own ‘transport system’ and this brought a different perspective to accessibility. So the human interest angle; the sun shone brightly most of the time, we ate too much and drank too much and spent a lot of time doing nothing much. It was a superb family holiday never to be forgotten.

The battery in my power chair had died while we were away and despite numerous attempts I failed to revive it. Luckily a new business, Roadrunner Leisure, has opened in the port; Fiona and Wendy offer a diverse range of mobility aides, bikes, golf society and baby equipment. (Click HERE for further details.) In any event when Fiona became aware of my predicament she organised a replacement battery in a short space of time. Thank you Fiona and Roadrunner!

We stay in Marina De La Duquesa and they are making great strides at complying with new Spanish disability statutes which must be fully implemented before the end of 2017. (Click HERE 2014 and HERE 2015 for previous posts) A hoist has been installed in the largest of the 4 pools within the complex and getting in and out is now so much easier and therefore more enjoyable. There is more work to be done and I’m really looking forward to seeing the finished project.

Máiread, Elaine and me

Jack, Elaine & Henry

Me on the hoist

Carrefour Supermarket in nearby Estepona has been totally revamped but, for me, the biggest change was in the toilet facilities. There were no accessible toilets before the remodel and now the facilities are accessible and spacious. There are designated parking spaces available but as always they are open to abuse.

Gents Toilets, Carrefour

Accessible Cubicle, Carrefour

Motor Cycle Parking Space!

Puerto De La Duquesa is built on hilly terrain and thus the Port is spread over 3 levels and unaccompanied accessibility cannot be guaranteed.

• The sea front is the most accessible area but the major accessibility issue is that all the cafes, bars and restaurants have a step from the road to the terraces and most have a further step from the terraces to the inside. Most have accessible toilet facilities. There is a diverse range of restaurants available; Mexican, Indian, Chinese, American Diner and Moroccan and there is also a great selection of cafes and bars to choose from.
  

  Slight step to sea front level premises

• The next level up has more bars and restaurants and after the initial steep hill is conquered most are accessible. Most of the premises have a small issue with steps at the front door but some issues are more serious. Most have accessible toilets. The range of restaurants include; Italian, Spanish, Indian, Argentinean and Thai. There is also a Kebab Shop and a number of cafes and bars on this level.

  

  Hill to upper levels

  

  Some business make an effort

  

  Some don’t

  
  

  

  Fountain on 1st level

  

  Best ramp in Duquesa

  

  Accessible WC in La Buena Vida

  
  

  

  Accessible WC in The Irish Steakhouse

  
  

• The top level, a further climb, has fewer restaurants but includes 2 Italians and a Steakhouse and if that weren’t enough you would pass a Fish & Chip on the way up.
  

  Ramp to 2nd Level

Some venues are more accessible and disability friendly than others whilst some are downright unfriendly in the area of accessibility. The Victor Grill has large steps at the entrance and further steps to the toilet facilities making them totally inaccessible; Il Capitano is accessible but does not have an accessible toilet; Parapiros is accessible but the accessible toilet has 2 large steps between it and the main dining area and La Traviata has an accessible toilet in a disused adjacent premises. In all cases I found the staff very helpful in their efforts to mitigate the poor facilities.

We went to Mijas, a picturesque village in the mountains overlooking the Mediterranean. My ears ‘popped’ on the way up. There is multi story car park at the amazing rate of €1 day and an elevator up to the main plaza with a large range of shops and cafes. The roof of the car park contains a tourist information office and an accessible toilet. There is another elevator up to the next level which has a wide variety of shops and cafes. The cobbled streets make wheelchair travel a bit more difficult but it is well worth the effort. The views of the coast are spectacular from the viewing platform.

Mijas Plaza

Spectacular Altar in Mijas Church

Mijas Plaza

View from Platform

Mijas Artwork

I was disappointed with Aer Lingus on the flight home as I was allocated a seat in row 24. It was a long crawl down the plane and back up again on reaching Cork.

McGettigans, Cork

We visited Mc Gettigans Cookhouse & Bar (Click Here) recently. The hostelry is located within the Ambassador Hotel, Cork and you would never imagine that what is now a beautiful hotel was once a nursing home. The hotel is snugly nestled on Military Hill which is the approach road to Collin’s Barracks, Cork’s only remaining working military barrack.

Mc Gettigans is a modern eatery, is beautifully decorated and the food delicious. Jean and I were joined for lunch by Elaine and Mairéad and the newest addition to the family our grandson Jack. We gave the menu a fair workout and all plates were cleared. Desserts followed with me declaring the Strawberry Pavlova the best ever.

McGettigans Dining Area

Mairéad and Jean

Elaine, Jack and Mairéad

McGettigans Menu

Disappointingly there is only one designated disabled parking space adjacent to the front door which is serviced by a very gentle and user friendly ramp to a tiled and easily traversed reception area. Access to McGettigans would be difficult from other parking areas due to the hilly nature of the site. The dining area of McGettigans is accessible with a fully accessible washroom nearby.

The Ramp

Reception

Accessible Washroom

All in all a great lunch in a great venue.

Bellinter House and more

Saturday July 30^th dawned overcast and cloudy but it was not raining and Jean and I headed toward Dublin for the wedding of my nephew, Conor Meany to his beautiful fiancé Lyndsey O’Neill.

Conor & Lyndsey cut the cake

This is not a commentary on the wedding which was absolutely brilliant. This is a critique of accessibility, or inaccessibility. I have said many times before that being able to get into and from a building is not sufficient to claim accessibility. If a person with mobility issues can’t get in it matters not what’s inside and if what is inside is not user friendly there is no point in going in.

We broke the journey in Midway, Portlaoise. There are a good number of designated parking spaces at the front door and the toilet is wheelchair accessible. There are a number of food outlets inside with a good selection of food to quell any tummy rumblings and keep us going until we reached our next watering hole.

The nuptial mass was held in St Brigid’s Church, Killester, Dublin which was about a 3 hour drive from Cork but our trusty SatNav got us to the church on time. St Brigid’s Church has ample car parking spaces and the most gently sloped ramp I have used in a long time. After the mass was finished and Conor and Lyndsey had officially been declared married we headed for Bellinter House, Navan, Co Meath for the celebration.

Considering that Bellinter (Click Here) was constructed in the late 18^th century it would be unrealistic to expect it to be truly wheelchair accessible and it wasn’t. Some efforts had been made but they had not been adequately thought through. The elevator to the reception area was around the rear of the house, effectively outside the back door. It is a platform elevator that required an operator on the platform and another on the first floor and that was after an almost impossible journey over a stone covered courtyard. The hotel did provide a staff member to drag me to the lift and subsequently to our bedroom. The staff did as much as they could but the concept of independence was shot on seeing the gravelled courtyard and further died on seeing the elevator.

Our room was spacious and comfortable but the en-suite facilities fell short. The bathroom was more than spacious and the sink and mirror were set at an acceptable level; the toilet had a drop rail and grab rail at the appropriate height but the shower lacked any rails or seating and was impossible for me to use.

Our En-suite

Our En-suite

Our Bedroom

It was now time for the reception to begin and it began by me being dragged backwards over the courtyard gravel then around the front of the house, which was tarmacadam and was a comfortable spin, and into the second courtyard which was also gravelled. The only way in for me was to be dragged backwards again. There was a perfect concrete path connecting the function room to the Spa Area but that was of no use to me, unfortunately.  The function room was perfectly accessible and boasted a modern wheelchair accessible toilet. As my bedtime approached I faced the drag across both courtyards again but thankfully I did not have to use the elevator.

Accessible Toilet at Function Room

More dragging across the courtyards before breakfast the next morning; the dining area was accessible but I think this was more by accident than design.

Dining Room

My one comment to the owners of Bellinter is why did you go so far but did not finish?

After a hearty breakfast and long goodbyes we headed for home. We stopped in Kildare Village (Click Here) for a break and bought Jack his first pair of boots.

Jack’s Boots

To people who don’t know Kildare Village it is an outlet mall with plenty of designated car parking spaces, is totally wheelchair accessible and has a number of wheelchair accessible toilets. We then back to the motorway and headed home.

A day trip to Rosslare etc.

Saturday morning dawned dull and dreary with dark grey clouds hanging low over the city; a heavy mist covered everything like a bad smell. Jean and I were heading to Rosslare, Co. Wexford, a round trip of approximately 400Km. We were going to Rosslare to collect our youngest daughter Mairéad from the ferry; she was coming home for some much needed ‘mum pampering’ after 7 weeks in hospital in London.

The weather varied between mist to light rain to quite heavy rain until we approached Dungarvan where it was dry and really we had expected nothing less in the Sunny South East. We stopped off in the Park Hotel (Click Here)  for a break and refreshments. The scones were lovely and you really can’t do a lot wrong with a pot of green tea. There are 2 designated parking spaces adjacent to the main entrance which is well ramped and the foyer and bar were easily traversed in the absence of carpet.

Park Hotel Dungarvan

The wheelchair toilet was clean, tidy and accessible without having an excess of space. Unfortunately there was neither a hand dryer nor paper towels.

We called in to St Helens Village for lunch with my sister Anita and her husband Jim before heading for the ferry port in Rosslare.

There are plenty of designated parking spaces (Pay & Display) adjacent to the entrance. The entrance to the terminal building is ramped and internally the building is ramped between the ground floor and 1^st floor but I think the ramps are more to facilitate wheeled luggage and passengers. I don’t think wheelchair users were considered when designing the building as you can see below the viewing deck is ramped on the inside but not on the outside.

The wheelchair accessible toilet was in the men’s toilet area and whilst spacious and functional it lacked basic cleanliness standards. The cubicle whilst having a sink lacked a dryer or towels.

Having collected our precious cargo we headed for home with one short stop at Mairéad’s friends house. Kate & Philip made us a cuppa and we continued on our merry way.

As the day drew to a close and dusk was falling there were some beautiful patches of red sky which we hoped were a portent for better weather tomorrow; ‘a red sky at night is the shepherds delight, a red sky in the morning is the shepherds warning.

Independence – Misunderstood or Overrated?

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.

Independence & Me

This post first appeared in Ms & Me on May 12th 2016

This week Declan Groeger challenges perceptions and examines our idea of independence. Desire to be free is a driving force for innovation and personal revolution.

I was diagnosed with Multiple Sclerosis (MS) in 1988and as the years have passed, my understanding of independence has changed.The most critical ingredient in the independence recipe is knowledge. I live my independence by making my own decisions. I don’t present my decisions as a fait accompli; there is always a discussion with other stakeholders in my life but the ultimate decision is mine and mine alone. Knowledge is power. There are two areas in my MS life where independence is crucial; treatment and Assistive Technology

Knowledge is power and we can empower ourselves by getting well informed. I must admit to not being fully informed in my earlier years on medication; this was partly due to the scarcity of information at the time but in particular due to my unwavering trust in the medical professionals. I didn’t address whether to go with medication or diet route until 10 years after my original diagnosis and then it was only after a 2^nd opinion confirmed I had MS. There is such a mountain of information available that it canbe difficult to separate the reliable from the unreliable. Social media plays an enormous role now as people from around the world can compare and contrast treatment options and discuss side effects in real time. The importance of a good medical team cannot be overestimated- your neurologist, MS nurse and GP all at the coalface with you. Pharmaceutical companies are different, as their prime motivation is to keep shareholders happy with large dividends and any of their claims should be treated with a healthy dose of scepticism. It is only by reading, learning, analysing and discerning that with full knowledge we can make informed decisions, maintain our independence.

The need for independence is often misunderstood and mistaken for stubbornness, I know that personally.Weakness in my legs was one of the earlier visible signs.At that time in my life I did not want to ‘link arms’ with the person I was walking with; I wanted to be me, to walk independently without assistance. I thought that people would look at me pityingly if I used a cane or other walking aid. Vanity? I now know that people looked at me as if I was drunk stumbling around the street and using walls for support. They couldn’t see my invisible illness but if I had a stick, people may haveunderstood.Not using a stick was an example of my stubbornness; once I accepted myneed and started using a stick, I became more independent in that I could actually walk without holding the walls! I’m not sure how many times suggestions were made but my family and friends accepted that any such decision had to be mine.

When my wife Jean and I went to Italy to celebrate our 25^th wedding anniversary, my need for further AT became very apparent on the cobbled streets of Rome. I rented a wheelchair there and myacceptance of myneed actually increased my independence. I had always thought that using AT was a sign of weakness, of frailty, but I wasso very wrong. Recognising the need of support shows self-awareness and strength; it is my recognition that I need supportthat has ensuredmy independence.Assistive Technology can bea liberator when accepted by the user.

The point of these anecdotes is that I made the final decisions on whether I use AT. I would have benefited from AT an awful lot earlier on my MS roadway but mentally I was not ready. But when I was ready, and once I reached that point, I embraced it wholeheartedly. If you’re a partner/wife/husband/friend of someone with MS, don’t just go out and buy a cane because you think they need it. Talk withthemfirst.

I will decide when I am ready for my next piece of Assistive Technology. I am not ungrateful for your thoughts and kind acts and help but offer and help on my terms; this may be the only true independence I have left. I have maintained my independence over the years to such an extent that sometimes I fear I have alienated some of the good people who have tried to help me at different times. Family and friends have seen me labouring under my MS load and I obstinately refused offers of help. I am much more polite in refusing help now; I also accept help more often than I used to. Independence is worth fighting for and let me put the world on notice that I will continue fighting.

Why do I valueindependence so much? Because I am human, because I am alive and being free is at the core of being human. There is also a bit of doubt- Idon’t want to become a burden on my loved ones, my family and friends. Most fundamentally, I don’t want to place a stumbling block in my own path.

Tell me, what does independence mean to you?

Here is a great blog by Mitch Sturgeon on Assistive Technology which may resonate with you as it clicked with me.

 

Letter to Elaine

This post first appeared on Living Like You on May 11th 2016

Dear Elaine,

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

Dad

 

 

There’s a moral in this story

Last Sunday morning as the wind howled and the rain bucketed down Jean and I headed for Dublin. I put a coat over my head as I ‘ran’ for the car. Ran is used very loosely in this context; I may have moved faster than normal but it was only marginal. Not really a wetting but more of a damping as the distance is short from the front door to the car.

The wind and rain had worsened as we approached Junction 8, M8 – the Topaz service area near Cashel when we decided to take a break for a cuppa. There are a number of designated parking spaces at the main entrance door. I decided to use my walker to go in in the interest of expediency, less setting up time. We both had a thoroughly enjoyable Apple Turnovers with our respective cuppas. The wheelchair accessible toilet is exactly that, accessible and functional – 5 stars.

The weather had deteriorated further as we were leaving after our break; the car was outside and we were inside with no alternative but to make a bolt for it. My first difficulty arose as I rounded the corner and the wind nearly blew me back inside. I was left with no choice but to move forward. I got to the car and had just folded the walker and deposited it securely in the car when a gust of wind blew the door and my hand slipped on the very wet side of the car and I did not have a soft landing. My chin met the tarmac which was hidden under a fine pool of water. Jean exited the car like Speedy Gonzales and two other ladies who happened to be passing came to my assistance and rapidly lodged me safely in the car; I am extremely grateful to those who came to my assistance. My clothes were no longer dry, my chin was a bit grazed and swollen; otherwise I was fine except for a major dent in my pride. We all know that old saying that pride goes before a fall and in my case it did, literally.

The moral contained in this tale is very simple and is often forgotten. Don’t go out in bad weather unless you really must and if you do go out pay special attention to the conditions. This obviously applies more to people not in the prime of health and help should be accepted when offered.

MS and Irish History

St Patrick’s Day 2016 seems an appropriate day to post my most recent blog which appeared on MS & Me. CLICK HERE

Don’t forget to leave a comment underneath or use the contact form

 

Mens Shed & MS

Cork MS Mens Shed

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?

Please leave a comment here or use the confidential contact form.

A Valentine Jaunt Part 2

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

Powerscourt Watefall

To the side of the waterfall

and headed across country to our next stop, Glendalough.

Glendalough is a monastic settlement founded by Saint Kevin in the 6^th 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.

Snowy Footpath

Model of the Settlement

Some of the Surrounding Area

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.

New Year Resolution

My mum used to say “Never stand when you can sit and never sit when you can lie down”. This sounded like good advice at the time and after my MS diagnosis I adhered to it with an almost religious fervour. I would sit at every opportunity despite the fact that some, uninformed, people thought me lazy.

Short cuts do not pay in matters of health and in fact they can be hugely detrimental. I learned how to do more whilst sitting and thus do less whilst standing and this has resulted in a deterioration in my ability to stand and remember that if you can’t stand you can’t walk. Functions are lost much faster than they can be regained.

Where am I going with this?

Well my walking ability has worsened over the last number of years due to MS but also due to my ability to take shortcuts whenever the opportunity arose. I started to rely more on my wheelchair and remember that awful slippery slope; at first you think you can’t so you don’t and very soon you really can’t. “Never stand when you can sit…”

My New Year Resolution “Stand more, do more standing and walk more.” We are now 2 weeks into 2016 and I am proud to say that I am still plugging away at my NYR and even more delighted to say that it is working. Slowly, ever so slowly!

I have substituted my wheelchair with a new easy managed ‘walker’ for short outings and am delighted with the results. I have used the walker 4 times in the last few days and whilst my legs are more tired the feeling of achievement is immeasurable.

There is an old African proverb that goes like this – “Despise not a snail for its slow and struggling movement; it has a destination and with time it shall arrive.”

A word of caution – MS is a very individual disease and what works for one may not work for another. My recipe may not work for you so be careful and recognise your own limitations.

Multiple Sclerosis and Serendipity

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.