A Brighter Future
Well It’s been a good while since I wrote anything for Uninterrupted, actually April was my last blog. Lots of reasons, lots of water under the bridge but we are all back and looking forward to blogging again, which we love.
A lot has happened in my little world since April, long story short. I bumped into an old colleague of mine and had a little chat. I said “I think I need a different neurologist, a second opinion". " Who would you recommend,” she says Dr Such and such, I said “I was thinking the same thing”. I get back to the ward and low and behold, she rings, says she has organised an appointment for me, with said different neurologist. All I can say is God, puts people in your path for different reasons and sometimes you are just meant to bump into people at a certain time in your life. (Thank-you, you know who you are! Our paths were meant to cross that day and I feel so blessed). So new neurologist, a fresh set of eyes, a few new medications that have made the world of difference to me and my life.
Firstly, there is Fampridine. “Fampridine is a potassium channel blocker indicated for symptomatic improvement of walking in adults with multiple sclerosis, including relapsing remitting, secondary progressive, relapsing and primary progressive. Currently there are no other drugs for this indication.
Fampridine is thought to increase conduction in demyelinated nerves by inhibiting potassium channels. It can be used on its own or with other treatments for multiple sclerosis, including immunomodulatory drugs. This means that it can block the flow of potassium ions in nerve cells, which results in a more effective nerve impulse travelling down toward the muscles.” - Australian Prescriber - an Independent Review. Volume 34, Issue 4.
I was very anxious and concerned starting this medication but I’m pleased to say I’ve had no adverse reactions to it. For the first few weeks, I didn’t believe it was going to work, then one day it just seemed to kick in. Work became so much more bearable. My walking may not be faster over any sort of distance but I don’t feel as slow as I was. My reaction times are quicker. I have developed a new stamina I haven’t had for a very long time, years in fact. Don’t get me wrong I still get very tired but I feel I can now work and most days have a bit of energy afterwards, which is awesome. I’m thinking I might actually get my life back a little. I even managed to go out for a farewell dinner after I’d worked a day shift, absolutely unheard of for me over the last few years. I was so pleased and so damn excited. I got to spend some lovely time with my work mates and say farewell to a very valued colleague and friend. (Miss you Sarah!) I also managed to go to Melbourne for a few days with my mum and sister. No big deal I hear you say but for me, it is a big deal. A very big deal in fact. I had worked four shifts, then went straight to Melbourne for a few days, then straight back to work. This certainly couldn’t have happened anytime in the last few years. I would have been couch bound from exhaustion after my four shifts. I attribute this all to Fampridine. Sure there were a few moments in Melbourne I could have curled up on a pavement and cried, thinking if I have to walk one more step, one more step, I’m going to die or I’m going to kill my Sister and my Mother ( Switch to video in my head - And in breaking news, 47-year-old woman stabs mother and sister multiple times, after having meltdown in Melbourne street) but rest assured I didn’t, I made it. I did it! It must seem like little things to you the reader but these little things are really big things to me. Everyday ordinary things people take for granted.
Anyway, the other new medication that I started was Baclofen, just a low dose at night but what a difference it has made to my quality of life. Baclofen is an Anti-spasmodic, muscle relaxant. I was forever getting out of bed at night to tread the boards trying to get rid of muscle spasms in my legs. Only to finally get relief then hop back into bed to get new cramping, so up I’d get again and start the whole process over, sometimes it could go on for hours. That added onto my sleeplessness was getting to be quite unbearable. I did try lots of different supplements and remedies but nothing worked. I wasn’t lacking in anything, it was basically the spasticity in my leg muscles causing the issue and my short circuiting nervous system. I’m pleased to say, since the commencement of Baclofen, I’ve only had to get up three times in three months with the dreaded Charlie horse in my legs. The floor boards and I have lost our old familiar dance routine and the walls have heard a few less expletives erupting from my mouth. The well worn path around my house is becoming a memory for which I am so grateful. Its been a big life changer for me.
When I first started nursing, I never wanted to be that poly- pharmacy patient but I am afraid to say I’m well on the way. I’m surprised I don’t rattle when I walk but what do you do? I’m not stupid, I know nothing is going to make my nerve signals transmit better except a medication. I’m better with these meds, if I wasn’t I wouldn’t take them.
So all in all, my life is looking a lot brighter than it did this time last year. For the first time in a long while I feel positive. I think, I hope? I can be a nurse for a good many years now, well touch wood. Last year I was so frightened of my future and I knew deep in my heart there was no way I could keep nursing the way I felt. It was going to be impossible but with the Fampridine, I feel there is a very real possibility. I can do this. I’ve stopped thinking about my walking future, which was in reality headed for a walking stick in the next few years. My gait has improved markedly and walking has become an easier task. Sure when I’ve come to the end of a long hard shift, my gait and walking is not so great but its much better than it was. I make it through shifts now a lot easier than before the Fampridine. I really do view my life in before and after Fampridine slide shows. Let me tell you it is so much better with. I feel blessed and so grateful I was one of the MS population this medication has worked for. I fervently hope it continues to do this. This medication has been a game changer for me.
So I’m looking forward to brighter days ahead and I’m back to being my positive self. Now if only my eyes would sort themselves out a little, I’d be on cloud nine.