Author Archives: Declan Groeger

I’ve thrown in the towel, finally.

I would urge you to use this link to read about my dissatisfaction with Cork University Hospital (CUH) before reading the final installment.

I received a letter this week which largely said that they were not acting on my safety criticisms and I emailed reply which I have copied here;

Dear Ms Cronin

I am in receipt of yours of the 13th instant and I have to reiterate that I am not happy with its content with particular reference to the emergency call button / pull cord.
Surely it would not be too difficult to install a second emergency button close to the floor adjacent to the toilet. After all is said and done the floor is where a patient is likely to end if they suffer an adverse incident while at the toilet.
The shower area is potentially the most perilous area in the bathroom and while I accept that a cord may pose a danger to some patients the absence of any mechanism to summon assistance is inexcusable, in my opinion. I suggest that a water proof call button close to the floor would resolve my concern
I am not happy with the proposed works but I have decided not to appeal to Office of the Ombudsman. This issue is ongoing since August and I am not going to invest any further time or energy in the matter. I am happy I have raised the issues in good faith and I really believe the proposed emergency call procedures are totally inadequate.
Kind regards
So you can see that I have thrown in the proverbial towel. They say that you ‘can’t beat City Hall’ well in this cae they were correct
Categories: Cork | Leave a comment

My MS Fears

This post first appeared in MS & Me on March 9th 2017. Please feel free to visit MS & Me to see numerous other posts

My MS fears have changed over time and yet they have stayed the same. You see I never really worried about what MS would do to me but how it would affect my family.

My first fear, post diagnosis, concerned my ability to continue working; the ability to provide for my family and continue in the hunter/gatherer role. Would my MS progress rapidly, rob me of my independence, confine me to a wheelchair and make me a burden on my family. I was 31 years old with two small children and I just didn’t know the answers and I was worried.

I worried whether either of my two children would have MS; that fear is still with me. As you know more women are diagnosed with MS and I have two daughters. There is a hereditary factor with MS and I have a maternal uncle who lives with MS; the odds were stacking against my two girls. I have twenty nieces and nephews and many of them have children of their own and I have a grandson. I sometimes wonder whether any of them will have MS.

Would I be able to continue with my fair share of household duties or would Jean have to carry a disproportionate load, whilst maintaining her nursing career? We found our level and Jean never complained but I did feel ‘guilty’ for not doing enough. Jean’s proportion has grown steadily over the years as mine has decreased but this is no longer a cause of worry; it is reality.

I had a number of other concerns but most of those only became relevant as an event approached; Birthday Parties, First Communions, Confirmations, Graduations, Holidays. Would I be an active participant or merely an observer? I did play an active part in all of these events. As my MS progressed and my precious girls matured into young women I worried if I would I be able to walk them up the aisle if they decided to marry? The girls did decide to marry and with a combination of grit, determination, pure stubbornness and a massive amount of positivity from the wedding guests I managed to fulfil my role as ‘Father of the Bride’ and walked up the aisle with both girls.

When I heard that I was to become a grandad I worried whether I would be able to play with our grandson Jack? Would I be able to hold and cuddle him? The good news is that this fear/worry was very short lived and Jack will be loved as much, if not more, than any grandson in history. Our playtime together will be different but every bit as enjoyable.

Multiple Sclerosis (MS) is different for each and every one of us and my one piece of advice to anyone diagnosed with MS would be not to be consumed by fear and worry. A diagnosis with MS is life-changing not life ending (although it may feel like that at the time).

Categories: Just thoughts | 1 Comment

Never Judge A Book By Its Cover

I was taking to a young man recently and to be honest I thought he was a bit on the heavy side and could do with a few sessions in the gym. We were in a queue and we just started chatting and he told me that he had had work and personal difficulties a few years back but he was getting on top of them now. In the height of his troubles his weight had climbed to more than 26 stone (367 pounds)  He then told me that he was now down to just over 16 stone (256 pounds) and having lost that much weight and getting his life together he was quite happy to plough ahead and lose some more. I was annoyed with myself for prejudging him,

Never judge a book by its cover!

It got me thinking about other non-visible stuff. I drive a reasonable sized family car and most of the time there are only two of us in it. To the casual observer we look like people who contribute massively to traffic congestion and the ever increasing hole in the ozone layer. Should we get a smaller car?. Those bystanders cannot possibly see that we have a baby seat permanently installed in the rear seat of the car, the other half of the rear seat is taken by a walking aide and the boot is occupied my wheelchair.

Never judge a book by its cover!

We see someone place a disabled parking badge on the dash and get out of the car and walk away with no apparent disability. This could be a person with MS on a good day but we rarely see that person battling the odds to get back to the car absolutely exhausted and almost crying in pain.

Never judge a book by its cover!

That person that we meet who is always in good humour probably only comes out of the house on good days and that is what we see; we never see the bad days or the black moods or the addiction that is hidden under the surface

Never judge a book by its cover!

It is difficult not to be judgmental as first impressions last. If the cover, or the title, of the book is not eye-catching we probably won’t pick it up. We need to be more understanding. We need to learn to NOT jump to conclusions. We need to learn NOT to assume or presume. We need to learn not to judge a book by its cover but we need to differentiate between the genuine and the disingenuous and that takes more than a cursory glance. We may need to curtail our disapproving looks and comments until we know the full facts. The old adage ‘act in haste, repent at leisure’ comes to mind.

Categories: Just thoughts | Leave a comment

Spanish Point, Co Clare

Jean and I booked into The Armada Hotel, Spanish Point for 2 nights for a short break. We headed off on Tuesday morning and stopped at Corbett Court, Ballyhea where we enjoyed a delightful light lunch. The restaurant is very accessible and the accessible toilet is spacious and functional. We then continued into County Limerick and under the River Shannon into County Clare and onto our final destination, Spanish Point, which lies on the Atlantic coast and the next stop is the United States of America.

We arrived at the Armada Hotel later that afternoon in very blustery conditions and whilst not actually raining at the time it was very damp. The hotel is accessible with a number of designated parking spaces adjacent to the entrance foyer. There are accessible toilets just off the reception area. We had reserved a wheelchair accessible room and now it was time to check it out. Our room was on the ground floor and it was exceptionally spacious with a functional and accessible en-suite bath room. The shower was functional but not as good as our own ‘rain-head’ but the locally handmade soap more than made up for it.

We went for a look around outside even though it was very blustery and foggy. On a clear sunny day the scenery would be spectacular. We then retired to The Ocean Bar where Jean ordered a piping hot coffee and I opted to try a local brew called Dooliner Beer. The weather being poor enough and the evening already closing in we decided to stay put and drive around the next day. That evening we ate in Johhny Burkes pub; Jean enjoyed a beautiful lamb shank while I enjoyed the largest bowl of mussels I have ever had. More pints and coffee followed.

The next morning we both enjoyed a fabulous carvery breakfast before heading off to The Cliffs of Moher. By now the rain and wind had settled in and that precluded us from going out to the cliff edge although many brave hearts did. We confined ourselves to the Visitor Centre which is very accessible and educational. It is well ramped, has an elevator and accessible and functional toilets. Two cafés and a visitor shop are also included. There are a number of designated parking spaces adjacent to the main entrance. Two of the photographs were obviously not taken during our visit. This is a link to a visit in better weather weather in 2013.

We then drove on to Lisdoonvarna and Doolin but the rain was still falling and the wind still howling so we decided to go back to the hotel for more coffee and beer. We dined in The Pearl Restaurant where Jean had paté and I had the most delightful tomato soup followed by pork for Jean and salmon for me.

A hearty breakfast followed the next morning before we headed for home. Storm Doris had passed over and it really was the calm after the storm and we drove home in bright dry conditions. We stopped off in Lily Mai’s at Bunratty for a cuppa and a scone before undertaking the final leg of the journey. Designated parking is available adjacent to the door and an accessible toilet is available inside.

Well worth a visit even if the weather isn’t the best.

Categories: Clare, Cork | Tags: , , , , , , | Leave a comment

MS No Filter

I think this is a great resource for PwMS. I may be biased as I contributed to the making. Click here to have a look at it.

Categories: Just thoughts | Leave a comment

D.A.B.D.A. MS & Me

Click here to read my latest post on Living Like You

Categories: Just thoughts | 1 Comment

My MS Journey

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

Categories: Just thoughts | Tags: , | Leave a comment

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 22nd 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 4th, 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;

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.

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?

 

Categories: Cork | Tags: , , , | 3 Comments

Bellagio Coffee House, Mallow – Accessibile

Bellagio Coffee House

Bellagio Coffee House

We have just back home from a visit to Mallow and we had a cuppa in Bellagio Coffee House on Market Square. We didn’t have anything to eat but everything looked delicious. The café is not large but I was able to move around without rolling over anyone’s toes. Jack gave it his seal of approval as his buggy and my wheelchair were parked together. We (not Jack) had coffee and green tea and a well earned break from a hectic Sunday schedule of doing absolutely nothing.

The accessible toilet was clean and tidy with the appropriate rails but alas no emergency pull cord.

Accessible loo n Bellagio

Accessible loo in Bellagio

There is on-street parking nearby.

Categories: Cork | Tags: , , , | Leave a comment

Starbucks – Blackpool S.C.

Starbucks seem to be opening everywhere and Blackpool Shopping Center is the most recent I have seen. For those of you familiar with B.S.C. Starbucks is located in the unit vacated by Xtravision some time ago. The entire area is wheelchair and buggy accessible (ask Jack) and has ample circulation space. Jack came with me to check it out.

Jack my assistant

Jack my assistant

The Accessible Toilet is exactly that, accessible, as it should be for a facility that has just opened. It is spacious and clean and has all the appropriate bars in the appropriate places. I was disappointed to see that the emergency pull cord was secured about 2 meters off the ground. I did speak with Tommy about the matter and he assured me that he will raise it with his immediate supervisor. I will return shortly to check it out.

Parking is readily available with a number of Designated Disabled Spaces in the immediate vicinity.

Feel free to leave a comment.

Categories: Cork | Tags: , , , , , , | Leave a comment

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

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.

Categories: Cork | Tags: , , , , | 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.

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.

Categories: Cork, Just thoughts | Tags: , , , , , , , , , , , | 4 Comments

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.

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.

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

    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.
  • 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.

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.

Categories: Spain | Tags: , , , , | Leave a comment

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.

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.

All in all a great lunch in a great venue.

Categories: Cork | Tags: , , , , , , | Leave a comment

Bellinter House and more

Saturday July 30th 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.

C & L

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 18th 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.

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.

Bellinter Accessible Toilet

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.

Bellinter Dining Room

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

Jack’s Boots

Kildare VillageTo 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.

Categories: Dublin, Kildare, Laoise, Meath | Tags: , , , , , , , , , , , , | 1 Comment

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

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 1st 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. Ferry Terminal 1The 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.

Categories: Cork, Waterford, Wexford | Tags: , , , , , , | 1 Comment

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.

Categories: Just thoughts | Tags: , , , | Leave a comment

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 2nd 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 25th 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.

 

Categories: Just thoughts | Tags: , , , , | Leave a comment

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

 

 

Categories: Just thoughts | Tags: , , , , | 3 Comments

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.

Categories: Just thoughts | Tags: , , , , , , , , | 4 Comments

Blog at WordPress.com.

Tripping Through Treacle

Stumbling my way through life with Multiple Sclerosis

mummy2boys

Single mummy to boys with MS

BizViz Net

Welcome to the Biz Viz Network, an on-line community for blind and VI business owners and aspiring entrepreneurs

playlifeoutloud

one day it'll all make sense.

Two Rooms Plus Utilities

Written from the heart, this is the unadulterated truth of live with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

dreaming the questions

Am I a bird that skims the clouds along, or am I a wild storm or a great song? - R.M. Rilke

BBHwithMS

Inappropriate MMJ Momma - Living With Multiple Sclerosis and Finding The Reasons to Laugh and Smile

MSnubutterflies

My Walk..........Living With MS

Ashley's Life with Multiple Sclerosis

"Through every dark night, there is a brighter day." -Tupac

Tripility

Tripility is a user driven travel resource, giving disabled people, those with dietary requirements or families of children the informed choice for their trip.

Mick, Jane and Me

Living Well With MS

jamiefoxblog

Ramblings of a ill man

Little Lord Oscar Dandelion Books

Little Lord Oscar Dandelion Books

The king'soracle.

Where the word of the king is, there is power...

The Dragons Kitchen

Where food and heritage meet, mix and combine

Following Seas

Navigating Your Best Life