Submitted by supaguy on Mon, 2018-02-12 12:03

Little things can mean a lot.SmileAlthough I do not dwell on it, I cannot deny that my mobility has slowly but surely become steadily worse over these years of MS.SmileI went from one stick two two sticks. When I came in the front door I used to leave my sticks in the umbrella stand and then use the furniture and other items to assist me around the house. As things came to pass, I would eventually find that I had two sticks by my bed ready for when I got up the next day. Those sticks were essential.SmileI remember that I used two go to the kitchen; make a coffee and hobble back to the bedroom carrying both my sticks in one hand and my coffee in the other. It had been a long time now since I had done that. The very idea of doing that had seemed pie-in-the-sky of recent months (we don't even attempt things that we know that we are not capable of).SmileAt midday today, I was awoken by a Skype call from a cpnhelp member, telling me that she'd arrived back home in Kiev from her visit to the UK. Normally I am never pleased to be woken up but I was pleased to learn that she'd got back OK. Except for trips to the bathroom, I normally have to wire myself up with an FES device to prevent foot drop on my right foot. If I am in a really bad way, I would only be able to move along by walking backwards without my FES device on. Today I seemed pretty OK. Today, I actually made a coffee and brought it back to the bedroom and drank it in bed.SmileI am reminded of an evening back in June 2016. I have a video of the event (don't get excited; there's nothing smutty in it). In the video, I am dressed in lounging clothes. Hanging down are two wires, not connected to anything. Normally, those wires are connected to my FES box suspended on a lanyard. I am wearing no FES box on this occasion. I walk up and down the living room twirling my sticks and sticking my legs up in turn. Cured!  For only then though. It didn't last long. I was back to "Normal" before I went to bed. All I now have is the video and the hope that it will return.WinkI recall an instance about two and a half years ago. I had landed at Malaga in Spain. It was the first time that I had really travelled as a disabled person. I had no wheelchair of my own then. I thought perhaps that I would hire some equipment in Spain. Special assistance was all booked for this journey. When I got off the plane, there was a wheelchair waiting for me. It took me to the end of the air-bridge whereupon they told me to get out and wait for different assistance. After 20 minutes, I knew that this wasn't coming. Amazingly, I managed to walk at good pace from the gate, all the way to the outside m of the airport where a taxi had been arranged. That was amazing. I normally could not walk more than 20 metres. On the return journey, I was asked whether I would be able to stand up and walk through the electronic security arch. I thought that I could but this I could not manage to do without my metal sticks. How things can change. They say a week is a long time in politics. I think that it was Dinah Washington that said "What a Difference a Day Makes". I think that perhaps Esther Phillips sang it better. haven't had an easy life and so never say things cannot get any worse ... because I know that they can. At the same time, I know that it is not a given that things cannot improve ... because they can AND THEY DO!CoolG

So, you went back to bed to drink your coffee at gone midday!  You lazy thing!

Actually, ignore that comment, because what you say is true, and in my experience, if you can manage to do something unexpected once, you will eventually be able to do it again, and then eventually it will become second nature, so this is very good news!.....................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

SG, thinking about my previous comment and reading about peoples slow but unexpected improvement from PPMS on that other site, are you still taking biotin?  I guess many people have stopped it because they aw no change, or not enough change to notice.  But, I started to take it in high doses a in mid 2015, even though I hadn't taken abx for years and years.  Recently both David and myself have noticed that I am walking upstairs much more easily and I have noticed that I am able to walk around my studio more, unaided.  This is about two and a half years since I started using biotin.  So, don't you give up.  Who knows: you might find yourself able to walk the coast path again, even if you do have to use trekking poles...........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Good, good news SG. It’s so strange how something we once could do easily, becomes a victory! Today SG you ran a marathon!  Did you spill any coffee? It’s hard to be a hero when kneeling on the floor, sucking up the remains of your brew through a straw!  Maybe the Metro helped? Maybe it’s simply a refusal to be a victim. Whatever, it’s a huge victory!


MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro