Daisy And Me People I meet when on my walks with Daisy

20May/120

Violent scenes at CUH

In the consultant’s room in CUH on Friday Freddie wanted to go to the waiting room next door to get paper cups. He’d spotted the cups on one of our previous visits and wanted them to make false noses as seen on Art Attack. So the two of us went off to get a few, leaving Lisa to wait for his neurologist. We’d already gone through all recent developments, medicine changes, seizure activity and hospital visits with her registrar and he’d gone off to report what was new. On our way back down the corridor, I heard some terrible noises coming from the consulting room…

First off, I heard what sounded like a chair being flung back and then a table being overturned. This was followed by screaming and what could only be punches being thrown. Lisa’s voice rose above the violence…

“Where’s the appointment you ******** **** *****?”

No, none of that happened. What I did hear was Lisa in conversation with Dr O’Mahoney and I hurried up so I’d be part of it. She was pleased that even though Freddie was still getting seizures it appeared that the ferocity of the clusters was receding, a sign that the Tegretol medicine might be working. For the first time in about five years and especially since this terrible patch began last autumn, the indicators were that a medicine might be doing its job. Not fully, as he’s still getting seizures but at long last we might, just might, be getting to the turn-off to the road that will lead to giving the little man some semblance of a normal life. After living with epilepsy for so long now we both know that nothing is ever certain and just when you get your hopes up it can all change for the worst in the flash of a misfiring neuron. It’s a terrible way to live, that you can’t allow yourself the comfort of being optimistic because you’ve been kicked back so often.

All in all though it was a good meeting. Freddie is scheduled to come off the Topomax this week and then Lisa can begin the weaning of the Frisium, a particularly strong AED. The good thing about Frisium is that you can go on a high dose fairly quickly and Fred was put on it to try easing the hell of last August. The side effect of it is that it makes the patient dopey, especially when it interacts with other AEDs.  Freddie's  is a comparatively small does but it will still take nearly two months for him to be off it fully. Lately he’s been particularly dopey making schoolwork very difficult, his coordination is way off and is very sleepy in the afternoons.  In a couple of months he’ll be on only two medicines, Tegretol and Keppra. The plan then is to introduce a drug that aids the Tegretol, called Vimpat. After starting on the Vimpat, Keppra can be removed, but again only slowly. Freddie has been on Keppra for nearly two years now with little effect, but unfortunately, it gets right into the central nervous system so we have to be careful coming off it. If by the end of the summer we can be down to two medicines with maybe, maybe, maybe a bit of control all will be worth it. The worst thing about starting a new medicine is the possibility of side effects, some can be life threatening, some just plain horrible and nasty. Last summer Freddie went on Epilim only for it to give him more seizures and it’s withdrawal was even worse…

On the PET scan, the neurologist has Freddie prioritised for an appointment towards the end of June. Now that the scan can be done in Cork, we just have to wait for the unit to be opened…this is scheduled for this month. After opening, it will need to be calibrated for Freddie’s particulars, this, as he will be the first, should take three weeks. It seems like a bit of a drag but apparently it’s the way these things go. The upside, is by having it  done in Cork, where all Fred’s team are,  things should move a lot faster and be under the sole control of his neurologist. Freddie will be the priority of everybody there, not just a name on a list as he would be elsewhere.

Whilst things are looking up Freddie is still living with regular seizures. Wednesday evening, almost exactly five days since the last one, he keeled over at home with Lisa. By the time Ruby and I arrived, he was up eating his bowl of rice, soya sauce and olive oil. When I walked in Fred looked up at me through sleepy eyes and even though he was eating, it was obvious something had happened. Lisa hadn’t rung so I wasn’t sure. Though he’d gone down only an hour previously he was having dinner, his quick powers of recovery, aided we presume by Tegretol, easing someway what he was going through. Another night of Freddie watching, has it been any different lately, but he got through with a clean card, no hospital again. The next morning though he had a couple in bed, one about 5am and another about an hour later. Why I was awake at 5am I don’t know, the seizure was so slight it couldn’t have woken me, we must be so attuned to his slightest movements at this stage. After he had another two slight ones we gave him have a Frisium about 7am. Though he was high as a kite for a while, he got through the day ok. Shows how strong these medicines are, half a tablet and he was like Dean Martin in his heyday.

On the way down toCorkon Friday, somewhere after Farran, Fred started talking about the zebra stripes…

“Where?” I asked.

“Back there” he said pointing; a bit too late for me to understand what he was on about.

Fred tends to look at life and his surrounds a bit differently, probably nothing to do with his medicines, at least not fully anyway. A few years ago I started a list of Freddie’s words and phrases for the things he saw around him. ‘Ghost’ his word for steam, ‘blue dark’ for twilight and plenty others. What the zebra stripes were, I couldn’t figure and all Fred was doing to explain was saying “back there”…

On the way home I gave him my phone with the GPS system open so he could track our progress. For a while it was giving full satellite imaging so he could see the buildings, roads and fields that we were passing. A few miles out from the real capital, he said that the zebra stripes were coming up again…

“There” he said, pointing to the right after a couple of bends.

In the fields where he was pointing were row upon row of polythene covered drills. The farmer must have sown corn,  protecting the early growths from frost and birds with the polythene. The  fields of covered drills stretched back up over the hills, visible only through a gap in the trees, like, yes, a zebra’s stripes.  Another term for Freddie’s lexicon of modern English…

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Posted by John Verling

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