Submitted by froggy 1965 on Wed, 2016-06-08 14:57

Nothing major to rport this time, however things in genaral have improved.  Still not walking but bladder control is still ok.  Cam now get up off the foor, am sure that this protocol is working - just v slow which I know now is connected to chamo I had bacl in 2003.  Have seen several posts recently connecting alheminers with cpn, am sure this connection exists,  My granmother suffered from it  now faher is loaing his imind and I have MS.  Anyway continue living in hope,  best regards to all. love Suzanne

Hi Froggy,

I recently had a fall and couldn"t get up without help, so I know how wonderful it is that you can now get up from the floor!

Wishing you more progress!

Hey Froggy  …

Nice to see your post.  I have had a response to it in my head for several days but, as we’ve both been on a pulse, I haven’t even been writing the things that it is imperative for me to write.

Anyway, I am glad to read that you recognise and acknowledge some of your improvements.  Sadly, your memory still seems to fail you quite badly at times.  Yes it is great that your recovered ability to get yourself back up off the floor remains in place; that is probably the most essential skill that you possess – living on your own, as you do.

Yes, great too that your regained bladder function and control holds fast. That is certainly one that would be difficult to forget in a hurry.

The disappearance of optic neuritis and the return of lost vision in one eye may seem like stale news; just so last year, as it were. I just thought I would remind you of that little matter.

I speak to you (via Skype) on a very regular and frequent basis. When I first started conversing with you last year, I used to struggle enormously to understand much of what you thought you had said. Apart from the slurring, you would frequently drop off the end of words and sentences. On a really bad day, you still do … but those occasions are now rare and infrequent. Speaking to you now is easy and normal … and no longer the massive strain on patience that it used to be. You don’t notice it, but I do.

Earlier last year, when I first saw you trying to stand up (via Skype), my first thoughts were “Oh F***!”  The tremor through your lower body was as obvious as it was intense. You’d have had no trouble getting full marks at a PIP or ESA Medical Assessment. Today, you assure me that you still do have tremor … but I don’t see it. I think that you are now very much improved. Of course, my assessment of you could be quite wrong; I have been wrong before (twice!).  This would, of course, mean that your brother’s observation during your recent return to England was also wrong.  He’s a guy that I have met and he seems no fool to me. He sees the same improvements as I.

You probably wouldn’t agree with the phrase “Mums know best”.  Your Mum’s observation is that your movement and your walking are much better.  Your Mum may not always be right but I reckon that her observations are correct.

When you were in England a few months ago, friends of yours claimed that you seemed to be a bit better.  To be honest, you didn’t look that good at all then; you had no flesh on your hands and no colour. These days, you are eating a bit better and starting to drink / hydrate properly. You look 200% better for it. You have now upped your dosages of biotin to about 250 mg a day. We will see even more dividends from that over the coming months.  You are getting out and about and, hopefully, starting to live. Froggy, you are getting better. Well done that determined girl.

Oh, and once again, thank you so very much for giving me the power wheelchair that had given me so much freedom and ability. Many days, I am not up to going out – but now, when I do go out, I have the ability and power to go further than the car. Thanks.

You and I have just finished a pulse, more or less together … let’s hope we can finish this illness and get well simultaneously too.

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

―    Abraham Lincoln

Suzanne, I have just read Supaguy's post and I am glad he made it: my slurring speach was one of the first things to improve, so maybe you are just a late starter!  I join with HealthyGirl and the big smile! Sarah Image removed.Image removed.Image removed.

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.