Monday, 10 April 2017

and the results are in

Today I went for a second walking test as part of my Fampyra / Fampridine trial. As I mentioned before, I'd already noticed enough of an improvement to have decided that I was going to stick with it for a little longer. Coupled with physio and exercise it certainly couldn't do me any harm, even if the results hadn't been quite as miraculous as I might have hoped (cards on the table: I really hoped it would be miraculous, even if I'd [unconvincingly] told myself that it wouldn't be a big deal either way).

So earlier on I went to the same clinic I visited exactly four weeks ago and did the same two-part test. The nurse hadn't shown me my times and she hadn't looked before I started walking today.

Now I admit I was really pushing myself to walk as quickly as I possibly could. But when I saw the results they were pretty mind blowing. The nurse was fairly gob-smacked too.
the scores on the doors
Trial One (aka "There") had changed from 13.6 seconds to 5.9 seconds.
Trial Two (aka "... and Back") had changed from 15.5 seconds to 6.4 seconds.

That's an increase in speed (using my dim and distant GCSE Maths) of 57% in both cases. And that's after only taking the tablets for two and a half weeks.

I'd been trying to play down my expectations but seeing it written it down in black and white, when my walking has been a long-standing issue for me, was really emotional.

The Nurse will now fill out a prescription for 6 months and we'll see how it goes.

The only downside of these pills is an obvious increase in over-confidence.

For example: I needed to speak to a different MS team to get some more forms for my Tecfidera blood tests. When I went down the corridor without using either of my walking sticks the Fampyra nurse was HORRIFIED.

It would've served me right if I'd planted my face right there in the corridor.

Thursday, 6 April 2017

my (first?) 14 days with fampyra

Not Fampyra / Fampridine. This is Vampyra in one of my favourite films, Plan 9 From Outer Space
Day 1
Maybe I’m concentrating more on sensations and the quality of my walking, maybe it's the wonder of the placebo affect, or just the feel-good sensation of doing something, but I feel more stable already. More control over my feet, toes more responsive after my usual vigorous after-shower massage.

Day 2
A little thing but I'm able to move the toes on my left foot without feeling as if I'm mentally and physically doing some heavy lifting.
Balance still shot but lugging myself around is definitely improved. Increased sensation in my fingers. Downsides? Feel a bit constipated and bloated.

Day 4
We had a late night yesterday, which coincides with the clocks going forward an hour later on tonight. As the doses of Fampyra need to be taken at 12 hour intervals, this is troubling me. I’ve decided to do a "hard reset" in the morning - this is when my stomach is at its emptiest. Who knows?
Have been wobbling like a newborn foal - it's like I'm learning to walk again AGAIN (again?). 
Went swimming today with my Dad who noticed improvements already.

Day 5
The slump. I've been trying to keep my perceived improvements under my hat but it turns out everyone has noticed already. I feel like a watched pot or a tiny animal in the garden which no-one wants to scare off. 
Last night we mad a meal from the OMS Cookbook, which was a complete and utter faff and was REVOLTING. Had a bad night's sleep plus we lost an extra hour. So I felt as bad as normal. Patience at all time low. Plus still feel sick after gross meal. 
The day was saved when we ordered pizza - mine was Vegan and delicious. Plus I shared our cooking failure with an OMS Facebook group and they all related their own disastrous meals with me.
Tomorrow is another day.

Day 6
Had a great night's sleep - still getting supportive messages on Facebook (it's good to know that most people feel the same about Flaxseed oil!). 
Not so much positive action with regards to my walking at this point. Is it stabilising?

Day 7
Went swimming - the absolute highpoint of my day was when I drove out of my parking space and a woman driver pulled up really close behind me. When the lights in front of me changed and I had to stop, I saw her completely lose her shit in the rear-view mirror. This is usually what I do. She looked totally ridiculous. Then, because she was on her phone (!), she didn't realise that the lights had changed. While I was waiting at the next set of lights I could see that she hadn't moved and had missed her chance to drive on.

Day 8
Unexpected Daddy/daughter day. She says she's ill, I'm not convinced. I recognise the tactics from my 10th (?) birthday when I pretended to be ill so I could come back home and listen to my new Howard Jones LP.

Day 10
The effects of Fampyra are getting less impressive by the day - over analysis on my part? Should there be a cumulative effect? Feel bereft of something I never had. The disappointment on the faces of family members is precisely why I didn't want anyone to notice.

Day 11
We attended a music festival in Derby City Centre. Access to most of the venues was shocking and we ended up using the dreaded wheelchair for part of the day. But we had a good time.
Low point was my Vegan pub meal - it was the first time I've felt punished for my life-style choice, just a load of vegetables in some anonymous stock - even I know to use cornflour to thicken sauces, people!

Day 12
Felt tired and beaten after yesterday and full of self-pity. Pep talk from my Dad which made me realise that although Fampyra on its own might not be a miracle-worker, if I can take these improvements in control with me to any Physio which I will be doing (alongside continued swimming), it won't do me any harm.
It was at this point that I decided to contact the MS Nurse to arrange a continuation of this treatment. So on Monday, I go to see her to find out if my walking speed really has improved as much as it seems.

Regardless, the change in my ability to control my feet has been really quite something. As I said, it's not (in my case) been a miracle cure - it has (to my mind) increased the speed of my walking, but not necessarily the quality of it - there's still work to do to prevent scuffing, dragging my feet, etc. So now I'm chasing a referral for another round of Physio and an appointment with Orthotics.