Author Archives: Declan Groeger

#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 QoL 1and 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.QoL 2

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?

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Another Accessible Restaurant in Cork

Jean and I, accompanied by my brother Martin and his wife Mary, went out for a meal last night and the chosen venue was El Vino, The Elysian Tower, Cork. The Early Bird menu is available from 5:00 to 9:00 Monday to Thursday and with 3 courses for €25 and a really good selection there were no complaints from us. Our plates were all cleared. I hadn’t seen Baked Alaska on a menu for a long time so I had to try it; El Vino Baked Alaska. Maybe it’s an age thing but I can’t understand why it fell out of favour. The staff are friendly and accommodating.

The restaurant is very accessible and has a spacious accessible toilet on the ground floor.El Vino - May '17 Circulation space in the dining area is a small bit tight for a wheelchair. There are a limited number of dining spaces on the ground floor but more are available upstairs.

Parking is available in The Elysian car park with further spaces in the multi-storey across the road, adjacent to Cork City Hall.

We will definitely make a return visit – well worth it.

 

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Accessible Berlin – A Packed 4 Days

We (Rose & Bruce + Jean & Declan) landed at Schonefeld Airport courtesy of Ryanair where our tour guide, Frank from Viator (Click Here), was waiting to take us on a tour of the city. Frank really loved his work as a guide and his passion was evident in his narrative while he drove us around with the occasional stop for a photo shoot or a more detailed description. We saw the Wall and its amazing artwork, Checkpoint Charlie, The Brandenburg Gate, The Bundestag and so much more that we didn’t notice the time passing.

We had booked the Holiday Inn on Alexanderplatz (Click Here) which is very central and accessible. Our room had a laminate floor which is very easy for wheeling but can be a bit ‘slidey’ when getting into or out of a bed that I felt was too high for comfort. The sink and mirror in our bathroom were perfectly set but the shower area had no seat although one was delivered after we raised the issue at reception. There were no drop rails adjacent to the toilet but we were told that they could have been supplied if requested. Overall we were happy with the hotel but really disappointed that the rails had not been offered when we complained about the shower seat. It seems to me that on requesting a wheelchair accessible room all the necessary assistive devices should be in place on arrival. I emailed the hotel on May 15th regarding my concerns and at time of publishing have not received a reply.

 

 

There is an area in Berlin called Museum Island which is a UNESCO Heritage site containing five museums but because of the brevity of our stay in Berlin we could not visit all of them. We chose to visit the Jewish Museum (Click Here) which is not located on the island and is spread over a number of floors with elevators, accessible toilet and easy access to all areas. We spent a few saddening yet enlightening hours there. There is an entry charge of €8.

We visited Sachsenhasuen Memorial and Museum (Click Here), a former concentration camp. It is about 70Km from the hotel and we opted for a taxi rather than a bus trip and guided tour. I had never set foot in a former concentration camp and it was unsettling to be in a place where so many people had lived and died in such brutal circumstances. This was an experience that put flesh on the bones of my history lessons all those years ago in school. The camp is very accessible but with large areas of cobble which make wheelchair travel more difficult but it is well worth the extra effort. Accessible toilet facilities are available and there is no entry charge. These are some of the mass graves inside the camp.

A cruise is a stress free way to see parts of the city invisible from the road. There are a variety of operators offering a variety of tour times and the operator we chose (Click Here) provided lunch and refreshments. See my previous post about the importance of selecting your embarkation point. Prices vary with the length of cruise and whether food is served.

We had planned on visiting the TV Tower (Click Here) but for structural reasons no wheelchairs, buggies or mobility impaired visitors are allowed entry. See my previous post on the topic.

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TV Tower

We visited a ‘flea market’ on Sunday morning and then took taxi ride to Modell Park (Click Here) which has scale models of all the major buildings in Berlin. It is set in a pedestrianised public park with its entrance a good distance from the public roadway. It is totally accessible with an accessible toilet and the trek from the public road is worth it. Entrance fee €4.50

We then visited the Bundestag and particularly the dome built atop the building (Click Here). The views are fantastic. The Dome is totally accessible. An elevator and accessible toilet are available but security requirements mandate a security check well in advance of your visit. Entrance is free.

Food matters while on holiday; we ate twice in La Maison de L’entrecote, attached to our hotel where the Curry Wurst was absolutely beautiful. We ate in the Hofbrauhaus which is an enormous Bavarian ‘beer hall’ that is easily accessed with a spacious accessible toilet and great food. We had a beautiful meal in the Block House which is very accessible but sadly has no accessible toilet facilities; see my previous post. We had lunch while on the river cruise. We snacked and coffeed in a number of places but the accolade for the best cheesecake ever goes to Café La Mouche where we had the most gorgeous Blueberry Cheesecake. Unfortunately the toilet facilities were not great.

We only used the train system once and the train was accessible without the need for assistance from station staff. Both stations we used had elevators. A visual inspection of some tram carriages showed that they are equally accessible.

I had read a report that Berlin was in the TOP 10 of accessible cities and I would certainly agree that it deserves its place close to the top. Well worth the visit

The staff at Schonefeld were courteous and obliging but lacked the equipment for seamless boarding and disembarkation. I choose to wobble down the stairs on arrival but I was carried back up on a chair.

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Berlin 2017 – Accessibility Issues

“Be Prepared” is a motto used by boy scouts the world over but it takes on a particular relevance for disabled travelers.

I visited Berlin, Germany recently and in the midst of the excitement I failed to prepare properly. I didn’t properly research the places that were on my list but I had read a report which placed Berlin high on the accessibility scale.

By and large I was lucky and only one attraction was truly inaccessible; the TV Tower. (Click Here for Details) The Tower is 368m tall, including the antenna, whilst the viewing platform is 203 metres up and is accessed by two elevators. Wheelchairs, buggies etc are not allowed up but neither are people with any mobility impairment whatsoever. The reason given is that in the event of an elevator malfunction or a fire the people on the platform would have to descend the 960 steps without assistance as the stair case is only wide enough for one person. It makes sense in terms of safety but I hadn’t foreseen this problem as two weeks previously I had visited the British Airways i360 (Click Here for Details) in Brighton, England and had no such difficulty but that was a mere 103m off the ground and the viewing platform was the elevator. I didn’t check the respective websites for accessibility information.

We went on cruise on the River Spree (Click Here for Details)  and although there were five steps down into the boat we managed, as going down steps is far easier for me than going up. The boat did have a reasonably accessible toilet. We were lucky with the cruise embarkation point we had selected as some of the departure and landing points are not so accessible as we found out when we choose to leave the boat at a different landing point; there were the same five steps back up from the boat but the there were a further 20 steps back to the footpath. By the time we realised the difficulty of the situation we had no option but to continue the tortuous ascent. My three experienced travel companions, Jean, Rose and Bruce, handled the situation perfectly and the crew were also nearby. I didn’t check the website for accessibility information.

We decided to eat in The Block House Restaurant (Click Here for Details), which is part of a nationwide chain, and is very accessible with beautiful food but had no accessible toilet. I failed to check the facilities before we ordered; luckily I didn’t the loo.

The TV Tower was built in the 1960s long before universal design and accessibility became fashionable but to my way of thinking The Block House can have no valid excuse for the lack facilities.

A full report of our short break will follow later.

Fail to prepare, prepare to fail.

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Compliment-ary Medicine

This is the link to my latest blog on Living Like You

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Costa Coffee

Costa Coffee recently opened a new outlet in Cork. It is located in the Kinsale Road Retail Park adjacent to Turners Cross and joins Woodies, Harry Corry, Halpenny Golf and Home Store and More.

The entrance doorway is more than adequate for wheelchair entry and the inside is easily navigable. The accessible toilet is clean and spacious with sink, mirrors, hand dryer and rails all in the correct position. The only negative is the Emergency Pull Cord which was secured about 5 feet above the ground and thus inaccessible in the event of a fall. This is easily rectified. There is a large car park with a number of designated parking spaces at the entrance.

Costa Coffee - Turners Cross

Accessible Toilet at Costa Coffee

 

 

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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

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.

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.

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

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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
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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).

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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.

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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.

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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.

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D.A.B.D.A. MS & Me

Click here to read my latest post on Living Like You

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My MS Journey

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

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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.

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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.

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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.

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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

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