The picture you see is of Oystermouth Castle,

Submitted by supaguy on Tue, 2013-12-31 12:57

HI Supaguy,

Looks like a beautiful place for a hike!

I am curious to know the distance of your hike AND how it compares to how far you could walk before you started the CAP.  Are you walking about this same distance now?



Hi HG!

As you know with MS, things change from time-to-time and from day-to-day.  I was given the label of Primary Progressive and, as predicted my walking has got worse and worse.  When I used to walk The Coastal Path, the distance was only a couple of miles there and a couple of miles back ... but the hill was pretty steep.  These days I may walk seververal hundred yards along the (flat) prom.  Saturday's stroll was a few  hundred yards.

My point was that was I have a hunch that things may be on the turn.  If I can build muscle in my upper legs, glutes & core ... then I am almost sorted.  I can feel stuff working in that area; could be wishful thinking of it could be real.

By the way, Healthy Girl; I have a confession to make to you.  I said that I would be pulsing right now.  Well I am pulsing ... though it not a nitroimidazole ,,, it is in fact flucloxacillin from my GP.  I had a lump and since taking that stuff, it made me really tired.  I thought it wise to delay the next tini pulse.

I hope that you are doing ok.


“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Hi Supa.

Don't be too concerned if you go further downhill. You are so far from the bottom now. This is a difficult and, for ppms I think, a long, long protocol. But, in my experience, it slows down the progression even if it doesn't stop it. 

I am delighted for to be able to hike and, to an American, it looks like such an exotic place!

Hope you win every lottery, especially the cpn one!


PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

The picture you see is of Oystermouth Castle.  I walked up this way last Saturday.  It’s a bit steep and I had to use my stick to full advantage.  I was struggling quite a bit.  Any thoughts of doing The Coastal Path would have been pie-in-the-sky.

I was labelled as Primary Progressive MS.  If one accepts the acknowledged wisdom then there is only one direction you can go … and that direction is down.  Here at cpnhelp we do not accept that acknowledged wisdom as given fact.  Therefore, if it is the case that I can go up as well as down, there’s got to be a low point … a low water mark as it were.

I have got three tickets on tonight’s Euromillions lottery and two tickets on tomorrow’s triple rollover.  I know this is tempting fait or bad luck but I wouldn’t mind betting that when I made it to the top of the hill, I’d actually reached a low point.  When I drifted off to sleep that night I regretted not having had my very poor walking filmed.  I will let you know if my walking continues to become worse and I would have lost the bet (bear in mind that I am confident enough to post this!).

We shall see.