Sunday, November 1, 2009
Friday, October 16, 2009
Hi there, I'm Kevin.
I'm your average guy except for one thing - I have multiple sclerosis. Now, before you switch off, this blog isn't about bitching, depressing everyone with the impact this lousy condition inflicts on 'MSers' and how tough things are for anyone associated with MS (my wife and children included). Take it from me as a given, it's tough.
No, I have found a drug that will potentially help (thank you Bob - you know who you are). You may or may not have heard of it - Low Dose Naltrexone, or LDN. If you want to know more, here's information about it from LDN Research Trust. Tomorrow, my first batch is due to arrive.
Why the blog? The doctor who prescribed LDN suggested keeping a diary so I could see what, if any, improvement(s) it brings. I thought I'd share my experiences of LDN treatment with you. I hope it makes interesting and light reading for those people who know me, those that are curious about the potential LDN brings to us and those who use it as a potential comparison.
I do need to tell you about my MS facts so you know a little about my starting point. Bear with me,
- I have secondary progressive MS. Until a year ago, this was relapsing remitting but MS has decided to truly rear it's ugly head and pull me down to its level.
- I 'furniture walk' around the house, that is I use walls and cupboards to steady myself, as well as crutches. My legs, particularly the left one, suffer muscle spasms and stiffness.
- Foot drop on my left foot.
- Fatigue is a major thing. MSers will know what I mean - by 1pm, I feel like someone has pulled out the plug and what energy I did have has drained from my body. Cue a nap.
- My balance is lousy. Falling over by moving too fast or awkwardly is a regular thing.
- Bladder issues. That is 'go-now-or-your-trousers-get-it' (yes, I could get drugs and/or a catheter - it's on the list to consider)
- I use a manual wheelchair outside.
On the plus side,
- I still have strength in my upper body, thus the manual chair.
- My cognitive skills are ok (but dependent on my fatigue levels)
- I do what exercise I can and work with a fab physio therapist at the equally fab Berkshire MS Therapy Centre.
- I work full time, just.
- I'm generally fit (not as fit as I once was but it's all relative).
- I take no drugs for MS.
- I'm boringly positive about life.
There's a snapshot for you.
What are my expectations of LDN? A difficult one to answer given what you read about other MSers experiences. Here's a taster. It's tough not to get caught up in the excitement.
To use a cliche, here's a line in the sand:
- I would love to be able to walk my daughter to and from school (about 200 metres each way), which means improvement in my leg co-ordination and a reduction in spasms. This will also mean less (or even no) reliance on the wheelchair when we go places.
- I'd love to cook again, which means an improvement in fatigue and balance.
- I'd like to be able to help around the house (honest), again fatigue.
- It'd be great to drink more than a pint before feeling drunk and/or needing the toilet. Again.
This means improvements in all or some of my:
- bladder control
It's a big ask so we'll see. I'm keeping an open mind, given it could make absolutely no difference at all.
I'll be giving regular updates via Twitter (you'll find me under kevbevw) and I've set up a Twitter hashtag as well, #ldn09, so you're welcome to join in the 'fun' by putting this hashtag on your Twitter posts. If you use LDN, tell us all about it. I'd like to do my bit to get LDN clinically trialled and tested so the more we increase the awareness of it, the more MSers will benefit, even if it doesn't work for me. I'll do a blog once a week, starting this weekend, so watch out for episode 2.