Been a while......

I know that it has been a while, but lots has been going on!

Now Stephen is off the Retigabine,  we are in a state of limbo with little idea of where we go next.

The collapses are pretty much daily. There is an occasional day without but they are few and far between. His most recent effort was in Tesco Fforestfach and resulted in the destruction of a DVD display. We had Tesco staff coming from everywhere!

We have even tried something really "way" out there (thanks to Alex) I think. We shall see. Hoping to see the Prof soon in the New Year.

What next??

Hope for the New Year?

Here we are nearly at Christmas and what do we want for the New Year?

PROGRESS!!!

That's all we want for Stevie.

Stevie's consultant is looking into an external Trigeminal Nerve Stimulation (eTNS) as a possible treatment for the New Year.

We hope everyone has a good Christmas and a happy New Year.

Jon

Welsh NHS - What a joke!!!

We went to the Morriston Hospital today for an appointment with a Neurology consultant and a prearranged MRI. Or so we thought. 

Waste of time and effort. 

No MRI. Incomplete notes and no copies of the notes and letters from Professor Kerr. 8 weeks minimum wait for the MRI and a month after that before we see any results.

Bunch of incompetent jobsworths. 

Back to where we were

Ok, the Rufinamide will be off Stevie's drugs in 4 weeks and we are getting back to where we were some 18 months or more ago, but not in a good way - see the next paragraph. It seems that there may be another drug option, or maybe not. We have a Neurology appointment next week, hopefully for another MRI to see what can be seen in his bonce. The last one was some 3 years ago.

Stevie's collapses are now pretty much once or twice a day and he is consequently getting hurt again as well. Some good bruises to his back at the moment.

He is also loosing ground cognitively again I think, but others disagree! He repeats himself constantly within a minute or so about everything, starts to say something and cannot remember what he is going to say. Things he knew what to do a while ago he now cannot remember how to do.

It is heartbreaking. And there is no end in sight!

However, on the good side there is a Rugby Game with the Gladiators RFC coming up against Worcester RFC on the 7th Dec on the Swansea RFC ground at St Helens and a tour to Belfast in February. Always assuming of course my body can manage it. Stephen is fine, my body is the problem!!

We shall see what happens next!!

And another thing...............

Another day etc!!

Stephen and Jan are both at work and I am here at home.

I am full of cold and grumpy...........................

I have been diagnosed with an underactive thyroid...................

Drugs for the rest of my life................................

I know this sounds bad but I have avoided drugs apart from colds and pain relief for the last 20+ years.............................

SPIT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Update - More medical stuff

Hi All,

We noticed some time ago that Stevie seemed to be developing a squint. I know, yet more stuff to contend with!

However we went to the Orthoptics and Opthmamology specialists today and it seems that Stevie has underdeveloped muscles on the outside of his eyes so that when he looks from close to long the muscles do not pull his eyes out from the close quarters position very well.

He copes well but his eyes "hunt" for focus when looking distance. You can see the eyes moving quickly, almost flicking. There is a medical term for this, but I tend to speak English not Medical !!!

He is due another visit to Neurology here in Swansea for an MRI in November so the Opthamologist has requested an extended MRI to look for any other problems in the eyes physical structures, just in case.

Ho Hum!

Otherwise he is fine. We are in the process of bringing him off the Retigabine as Prof Kerr thinks it is not doing much good (see above!).

He is great my son. Here is a pic from our holiday in France, one of my favourites:-

Funny...

Stevie is in good form so far today.

At the moment he is watching "Puss in Boots" on the TV and laughing hysterically often. Also he is on his feet during the action sequences jumping up and down and cheering when the good guys win!!

Great to see!!

I hope to get him rowing again soon, especially in the Celtic sea rowing boats at Mumbles. More exercise has to be good.

We shall see!