I hope treatment will stop Multiple Sclerosis in its tracks – Echo Live

AN ordinary man with ordinary interests, Patrick Keane loves life, even though it has become more of a challenge than ever before.

He cannot play a round of golf or go for a walk by the beach any more. But he doesnt want pity and exudes positivity. So he enjoys soaking in the sea air around Clonea or Garryvoe without stretching his legs.

But reality has a way of crashing through the faade at times, no matter how strong you are.

For Patrick, it can be when he wakes up and cannot feel his legs, or loses his train of thought, or misses his mouth when trying to eat because he cannot feel the spoon in his hand. Or if he gets out of bed and falls and screams at himself, Just get up will ya, ya fool!

But the man known as Pa to his friends, or Patch to his mother Margaret, brother Paul and sisters Yvonne and Elaine, dusts himself down, drags himself back to an upright position and goes about taking on the day in as fearless a fashion as possible, given what he must encounter now and the knowledge of what lies ahead.

Multiple sclerosis affects the central nervous system, the brain and the spine, and while the rate of degeneration differs for all, there is no escaping the degeneration. Ireland has 8,000 sufferers with apparently no cure.

Patrick, who was diagnosed in January, 2009, is not without hope however. A doctor, Denis Federenko, has been providing stem cell transplants to people from all over the world at the AA Maximov Hospital in Moscow, with some success, by wiping out the faulty immune system with drugs used to treat cancer and replacing it with stem cells taken from the patient.

Irish comedian, Stephen Garland is one who underwent treatment in November, 2016, having been told he was around six months away from being confined to a wheelchair.

He returned home just before Christmas that year and has thrived since, even writing a show about his journey to Russia and back.

Garland brought his creation, Post-Disposed, back to the world-renowned Edinburgh Fringe Festival in August, confirming his continuing improved health.

The treatment costs between 50,000 and 60,000 including aftercare and other expenses. It can be hard to ask for help but so many people have extended a hand to Patrick, without ever being asked. People Patrick doesnt know from Adam or Eve have even contributed to his cause and it moves him to tears.

Time is against the Corkman however, because if his condition exceeds 6.5 on a scale of 0-8, he will not be taken on. At present, he is between 5.5 and 6, and has been accepted, but clearly the treatment must take place sooner rather than later.

To that end, a Breakfast With The Stars event is taking place at The Park Hotel, Dungarvan on Thursday, October 10. Tipperarys All-Ireland-winning manager, Liam Sheedy and multiple champion jockey Davy Russell will regale patrons with stories from their careers, prompted by MC Marty Morrissey.

All proceeds will go towards funding Patricks treatment and ancillary expenses. Ticket purchasing details are below.

Here is more about Patricks story...

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LAYLA walks into the family home in Ballinroad, just outside Dungarvan. It was Patrick who named her, after the Eric Clapton song that he happened to be listening to when the family were discussing what to call the now 12-year-old dog.

Music is a boon, a real infusion of energy, pumping the blood, making him feel like he could jump out of his skin and dance like the old days. He cant but that burst of adrenaline is a godsend.

I have the car adapted with hand controls, Patrick explains. I dont use my feet for driving. Push and pull the lever in the car.

On a Sunday morning I love nothing better, especially when I am down at home. Head down the coast road to Tramore, listen to a bit of music.

I would listen to absolutely anything. I am influenced by dads taste in music. All the older stuff, 70s, 80s rock music kind of stuff. You could find me listening to dance music two minutes later. Once it has a beat I couldnt care less.

Patricks dad, Richie Keane, was a hard worker, who was brilliant with his hands and especially with cars. And all his life he had a smaller shadow. The son looked up to the father like he was Superman.

When he was sick and on his last legs, talking through the window from the house he taught me how to take the sump off my car because it was cracked and leaking oil. He was able to guide me through it without looking at it, word for word.

I restored a Jeep that he left when he passed away. It was a 1983, same age as myself, Mercedes jeep. Very rare, like hens teeth. Restored it to about 25,000 to 30,000 worth.

I had to sell it. I couldnt drive it anymore because the leg was so bad. That was hard. That was the last connection. It was something I had to remember him by. The day I saw that go out the drive was tough.

Richie died in November, 2008, around the time of Patricks 25th birthday. Richies mother passed away two weeks later. Patrick was diagnosed with MS in January, 2009. Already a celiac and diabetic, he was accustomed to restrictions and putting up with things. This was a different stratosphere though.

It began with losing his balance and the development of numbness down his right side.

I went to the doctor, and I think, by the look on his face, he knew there was something not right. He sent me to Ardkeen (Hospital) and I got checked out. They had me in isolation for about a week. Then I was told it was MS.

I didnt know what it was but it was something I heard from a conversation when I was younger, That poor fella has MS. I didnt know I would end up the way I am now.

I have friends since that have been diagnosed after me that I have gotten to know from reaching out. There are a couple of them in a wheelchair. As it progresses, that is where you are heading. But there is a gentleman up the road and he must have it for 20-something years. Unless someone told you, you wouldnt know he has MS.

Part of the difficulty of dealing with MS is that no two cases are alike. Keeping active, having physiotherapy regularly and working are advantages and Patrick has not declined as quickly as others because of that.

But he has hit the secondary stage, where there are cognitive problems and, in particular, his short-term memory is affected.

People say to me, do you get pain with it? I dont know what new pain or old pain is. I just get on with. I have my days where I whinge and moan and cry. God knows I have them. But there is people out there worse off. I have what I have.

It could get worse. Now that it is gone to progressive MS, it probably will. When or how long? Who knows?

It is a horrible disease, there is no two ways. But you get up, get on with it, and do what you can.

He went to Australia not long after the diagnosis. It was a real gesture of defiance, one that probably scared his mother but he knew too that it might well be a case of now or never.

A blocklayer by trade, Patrick eventually had to give that up as his coordination worsened and he nearly fell off a roof. He is on crutches now for three years and would not be able to catch a football if you threw it at him. He wears a leg cast too, to reduce the instances of tripping himself up, without eradicating them totally. He has a mobility scooter.

A 35-year-old man doesnt dream about a mobility scooter, he wants a flash sports car. But it allowed me to go down to the Greenway for the first time. That was nice, to be on the Greenway, to be out, and see the whole lot of it, it was lovely. But watching other people cycle off down killed me.

My two nephews were out the front playing soccer. I used to do the exact same thing. They were saying Patrick, are you coming out to play? I said I would love to but that gets you. Its the simple little things.

Katie, my partner, I dont know where I would be without her. My mam, the girls and my brother, they are fantastic. They have been with me since the start of it.

I decided I want to be independent. If I didnt have the car I dont know what I would be doing. That is my freedom. I can get into the car, go to the shop for coffee. I will get there. I will get the same place as anyone else will, but it will take me longer.

He lives in Cork with Katie and her son Aaron, and works for Voxpro, who have been tremendously supportive. If he were housebound, he would wither.

I am an outgoing guy. I would chat away, waffle on about anything for hours on end. But you take that away I dont know have I changed since the diagnosis.

I have tried to remain as positive as possible but sometimes its hard. Simple little things you take for granted. Just run out there to get the clothes off the line. Now I have had to get handrails put into the house so that I can get up when I trip and fall.

I would wake in the mornings and the legs are like jelly. They shake, you cant control it, you let them shake out and that could be for 20 or 30 seconds. Real spasticity and stiffness in the legs. With the heat during the summer, I sat in the car with the air con on. I would be good for doing weather forecasta. I know what its like when I wake up in the morning, ever before the curtains are pulled. I feel it in my body.

He has been trawling for potential treatments, along with his medical team. Dr Federenkos work stands up to inspection. Stopping the MS in its tracks without the need for further medication would be a tantalising prospect.

Reversing the effects is something he dare not even contemplate, though the treatment has had that effect in Garland and many others.

Being given the green light, after Dr Federenko reviewed his case and medical records, was like an infusion in itself. Patrick details every step of the treatment and though it sounds daunting, it isnt compared to the alternative.

He set up the GoFundMe page (https://www.gofundme.com/f/stop-ms-progression-with-stem-cells-transplant) and was staggered by the reaction. Meanwhile, the local community has rallied, as have his work colleagues and friends, organising fund-raiser after fund-raiser. People he didnt know had events. He finds it hard to process.

To ask for someones help, it is a sign that you are not able. I have talked about this treatment for so long and I got so bad in my legs and balance and everything, I finally gave in and set up the GoFundMe page. It killed me to have to do it.

There was a donation yesterday on GoFundMe from Jamaica. I dont know the person but they found it in their heart to say, There you go. People said to me, Sorry I cant give you too much, I want to give you more. If it is a euro or 20 cent, it could be that 20 cent or euro that gets me over the line.

Whatever happens, he will not give up because it is what he learned when he was Richies shadow: It is instilled in me from dad, I would always have looked up to him. Even now, since he has passed away, I would always say to myself, What would he do? Would he have approved of that? He would always say to stick at something until you get it. If you are going to start something, do it. Just dont walk away from it.

Breakfast With The Stars, featuring Tipperary manager Liam Sheedy, one of the all-time greats of National Hunt racing Davy Russell and RTs Marty Morrissey, takes place at The Park Hotel on Thursday, October 10. To book a table of 10 for 1000 contact Michael Ryan (087 2585299) or The Local Bar (058 41854).

Donations can also be made to Patrick Keanes GoFundMe pagehttps://www.gofundme.com/f/stop-ms-progression-with-stem-cells-transplant

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I hope treatment will stop Multiple Sclerosis in its tracks - Echo Live

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