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MSadversary – MSaversary 30 years & counting

It is about 30 years since the doctor said those devastating words “You have Multiple Sclerosis”. I have never marked that anniversary before and I am not going to start now but it is worth noting its’ passing. MS has thrown lots of stuff at me; it has tried to break me but has failed thus far. This not a list of what MS has stolen from me nor is it a list of what I have managed to keep in spite of MS. This is where I show how 3 songs have helped me in my battle.

The first is a Gloria Gaynor song (1978) ‘I Will Survive’.

“At first I was afraid, I was petrified…  But I grew strong…”

I have become strong despite MS not because of MS.

 

The second is a song by Johnny Mercer (1944) “Accentuate the Positive”

“You’ve got accentuate the positive. Eliminate the negative.”

I was blessed to be born with a load of ‘positivity’ genes. Thanks Mum and Dad.

 

The third is a song by Dido (2003) “White Flag“

“I will go down with this ship

I won’t put my hands up in surrender.

There will be no white flag above my door.”

Some people confuse stubborn and independent but I don’t; I am both.

FUMS

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Hospitalised, Part 2

A bit of background to start with for those who don’t know me! I was diagnosed with Multiple Sclerosis (MS) 30 years and since then various parts of my body have ceased to function in a meaningful manner. My bladder is the most recent part to refuse to co-operate with everyday life. It just doesn’t work anymore. I have a supra pubic catheter fitted (a tube fitted just below my belly button directly into the bladder) and an external bladder; this makes me more very susceptible to Urinary Tract Infections (UTI) and ultimately sepsis. Such was the case recently when I was admitted to hospital with sepsis. I also had the added complication of stones in my bladder which increase the chances of infection. MS is taking its’ toll on my body but be warned that I will not go down without a fight.

C-reactive protein (CRP) levels are used to determine infection levels and are determined by blood tests. 99% of people without a chronic illness have a CRP level of less than 10 whilst a raised level under 100 is indicative of a fungal infection and a raised level over 100 is indicative of a bacterial infection. These figures are important in determining what course of treatment to follow. My CRP level on admission was in the region of 350.

Within a very short time after admission I was administered an intravenous (IV) antibiotic and fluids. Over the next week the level reduced to about 200 which wasn’t low enough or reducing fast enough. It was time to change antibiotic to something stronger which resulted in the level reducing to the 100 mark but doggedly refused to go any lower. The doctor decided that I could go home to continue my recovery and I was given a strong oral antibiotic to continue at home and the CRP level continued to decrease.

As I mentioned earlier I had stones in my bladder which needed to be removed in order to lessen the ongoing chances of infection. Bladder stones are not all that unusual and the removal procedure is called Litholapaxy and mine was scheduled for two weeks after my initial release and it is carried out under general anaesthetic. I was advised that a General Anaesthetic and MS don’t often work well together and the recovery time may be slightly longer than usual but I was I was very pleasantly surprised to learn that the procedure had gone very well and I could be released later the same day.

Unfortunately I will always be prone to infection as a result of my compromised immune system; some of the medications I take to slow the progression of my MS and treat the symptoms contribute to the increased risk of infection. There is no certain way to completely eliminate the chances of another infection. I, and other People with Multiple Sclerosis, have to live with this threat constantly hanging over us.

I am now super vigilant of the initial signs of a UTI. The early signs are cloudy urine and/or an elevated temperature. Dehydration also plays a part.

Infections sneak into the body sometimes unknown to us so it falls on us to be super-vigilant – don’t ignore even the smallest cut or graze; it may seem insignificant at the time but wash it and disinfect it immediately. If you notice anything ‘brewing’ consult your doctor immediately. Remember that there are no guarantees of an infection free future.

Nocturia is the medical term for having to make one or more visits to the bathroom during the night; the need to pee after going to bed. An artificial bladder negates that particular problem.

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Hospitalised

I was hospitalised recently for 13 nights and whilst no stay in hospital can be described as pleasant it was necessary. You see I hadn’t been feeling great for a few days and on that Sunday evening I was unable to get myself off the floor; no I hadn’t fallen I was practising some Yoga and just couldn’t get up. Jean brought me to the local hospital where I was admitted through the Emergency Department (ED).

The Triage Nurse on hearing the word ‘sepsis’ whisked me through reception, took an initial set of observations and called a doctor. In the meantime Jean completed the necessary paperwork and my medical history for the doctor who was now at hand. Fortunately it was a relatively quiet evening in the ED and I was administered an Intravenous (IV) antibiotic within a short period. It was only relatively quiet as there were no trolleys available in the ED and no beds available in the hospital. I remained in the triage room overnight.

The following morning I was moved onto a corridor in my wheelchair where I remained for the rest of the day. Later that evening I was relieved to be transferred to a trolley and in the small hours of the following morning I was finally transferred to a ward with a real bed about 30 hours after arriving at the ED. My stay in the ED gave me a clearer understanding of the discomfort and lack of basic privacy experienced by patients. People should never have to endure these conditions. Being a mere statistic on ‘Trolley Watch’ is not good and for a short period I had been just that, a statistic.

I was very disappointed with the washrooms in the three rooms in which I stayed; none of them had bilateral supports at the toilet or a mirror positioned at an appropriate height to facilitate seated shaving and only one had a shower cubicle which was small, had a step and no support rails were evident. In my opinion unilateral support is insufficient anywhere within a hospital. However the doors to the washrooms were wide enough for my wheelchair and could open inward or outward. A room for assisted bathing was available on the ward but alas no shower. I did not avail of the assisted bathing. I did manage to shower in another ward but I raised serious concerns about that shower room which again lacked adequate support rails and space was poorly utilised.

During a light hearted moment I told some of the staff that I was going to do a Trip Advisor report but this is as close as it will get. I was sick and my taste buds weren’t functioning well but I know enough about food to say that whilst not Michelin quality it was tasty and edible. My standout dishes were a very tasty Shepherd’s Pie and a gorgeous Strawberry Cheese Cake.

I spent a total of 13 nights in hospital and I cannot praise the staff highly enough. They did their individual, and collective, bests under difficult circumstances.

Overall the hospital served its purpose. I recovered and wrote this at home but the facilities could be better, much better. Hospitals cater for people who are not in the best of health and designers should make every effort to make patients feel safe and secure. It’s not rocket science it’s common sense; very often what appear to be small issues make a big difference.

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Soba – Accessible and Very Tasty

Jean and I visited Soba Asian Street Food in Blackpool Retail Park last evening. We had heard good reports and are quite happy to add our voices to the many compliments. As you know I am not a food critic and this blog is largely about accessibility but the food was absolutely gorgeous, the portions not small, the service friendly and efficient and not expensive. A number of Gluten Free options are available and although I am not coeliac I thoroughly enjoyed my GF Chicken Wings in Mango Tamarind Sauce and my GF Sweet & Sour Chicken. Jean also enjoyed her Thai Green Curry. CLICK HERE for details

There is ample car parking available with a number of designated disabled parking spots close by. There are no obstacles to wheelchair entry but circulation space inside is a bit tight. The wheelchair accessible washroom is spacious and has the requisite rails and low level sink.

All in all well worth the visit! Accessible, tasty and great value

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Rachel’s Restaurant, Cork

Jean and I visited this new restaurant (Click Here) last weekend and were absolutely delighted with the accessibility, the staff and the food.It was another part of our ongoing birthday celebrations and it was great.

The double width entrance doorway is level with the footpath and same level continues throughout the dining with the exception of one raised section and there is plenty of circulation space. The wheelchair accessible toilet is exactly that, accessible. It is well decorated and has the appropriate rails etc. It lacked a mirror the night we were there but Rachel promised that it would be installed before our next visit.

This not a critique on the food as we are not food critics but we both loved our three courses and we gave 5 stars for accessibility, food and staff. There is on-street parking in the vacinity.

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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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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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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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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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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?

 

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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.

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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.

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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

5 Accessibility Stars – Cork International Airport Hotel

 

Jean and I recently stayed at the Cork International Airport Hotel (Click Here). We were on our way to Spain to get a natural top-up of my Vitamin D levels and we had an early flight to catch the following morning. We parked up and left the car there for the duration of our absence. The hotel provides a mini-bus service to and from the airport. There are ample designated disabled parking spaces to the rear of the hotel and whilst it is to the rear of the hotel it really is not the back door. We had a beautiful meal in the hotel restaurant, The New Yorker, to get our holiday off to a good start. Jean had Paté and I had Caesar Salad and we both followed with a succulent Belly of Pork

The entrance foyer is part carpeted and the reception desk caters for wheelchair users. There is also a wheelchair accessible toilet in the foyer.

Our room was spacious and perfectly accessible with a full ‘wet room’. This selection of photographs describes our accommodation better than any of my words.

We had visited the hotel previously were disappointed on a number of fronts but this time we had no complaints. We had an early night followed by an early start and the following morning we headed for Spain to make our contribution to the recovering Spanish economy.

Don’t forget to use the contact form if you want to get in touch privately. All comments are appreciated and will be acknowledged.

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For Better or for Worse

This the link to my latest Living Like You blog

It is an interview with Jean about the affect MS has had on her life,

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Hanleys of Cork Seasonal Shop

It’s not far away you know! What says you? Christmas says I.

It comes around at the same time each year and each year we get rid of some older decorations and add some new ones. This is our first year in our new home so we decided to treat ourselves to a little extra. With that in mind we visited Hanley’s of Cork Seasonal Shop.

In terms of accessibility the shop is excellent. There are 2 designated parking spaces in a more than adequate car park. The shop is really accessible and even though gloriously stocked with all you might want in Christmas decorations it is navigable in a wheelchair.56 4 3 2 1

Hanley’s is also a Garden Centre which is totally accessible. There is a beautiful cafe on site. There are steps and a ramp connecting the Seasonal Shop and the Garden Centre but this is not doable without assistance.

I can thoroughly recommend a visit whether you are mobility impaired or not.

Christmas Rating 5 Stars. Accessibility Rating 5 Stars

Feel free to leave a comment or use the contact form for a private message

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