Sarah's Illustrated Blog, part two.

  This carries on from here:http://www.cpnhelp.org/?q=sarahs_illustrated_blog#commenthttp://www.cpnhelp.org/?q=sarahs_unillustrated_blog#commentThe last week of January, 2005, so nearly two and a half years since my diagnosis of very aggressive SPMSi, and very nearly three years since my right arm almost completely gave out, leaving me unable to do up the buttons on my shirt unless I struggled with my left hand for half the morning.  Forget shoe laces.  Until the actual diagnosis I was living with the vain hope that it would just get better.  After all it had happened before, twice, but a few weeks later it was completely gone.  This time, though, the weeks passed by and there was not the least improvement.  Far from it: things were going wrong in other ways and quite rapidly.  Much of this I was completely oblivious to, which maybe, if there had not been a way out, would have been the best thing for me.  Like someone who has a bad stroke who is unable to pull out, at least I would not have really known much about it.  Other people would have suffered but not me.David's mind though, went back to his early student days and the slightly later days when he was studying neuroi-pathology at Oxford.  Then he met people in the last stages of MS and they always appeared to him that chronic infection was involved somewhere.  But what?  People had various ideas over the years but nothing had ever been proven.  Chlamydia Pneumoniae had not even been discovered.  That happened after he started work here in Bedford and I remember him telling me a few weeks ago of the day they first cultured it in his lab.  At that time, in the 1980s it was only thought to be responsible for low level community acquired pneumonia.  I developed my first very benign MS at that time.  It didn't really trouble me for years.  My eyesight was perfect, various numbness's would come and just as rapidly go, then my right arm gave out for the first time.  Now I had to do something, so I first went to my GP.  She was on maternity leave so I saw a former member of the practice, brought back from retirement.  Not looking in my notes where he would have seen a drawing of my left thigh, with a contour line showing where the numbness was when I saw a previous GP, when I was not long out of college, this man blithely said it as a trapped nerve, so come back in thee weeks if it was no better and he would arrange some physiotherapy.  That was no good to me, so I went to see an osteopath.  When I went for my fourth appointment he told me that I had better see my GP before he did anything more.  He had a book about MS open on his desk.  I was horrified.  It couldn't be MS, not me, he was being silly, I was so healthy apart from my arm.  So I went to see the physiotherapist of the local football club, who said it would probably be better by the new year, and it was, of course.  But now, in the summer of 2003, the weeks were dragging past.The week following my diagnosis David searched and searched for information, would maybe have started me on doxycycline anyway, but then he discovered the work going on at Vanderbilt and well, it worked!  So today I am not, against the expectation of "my" neurologist, sitting like a useless lump in the corner of some nursing home, or worse but I have started work on two big acrylic canvases, 2 x 3 feet and nearly 3 x 4 feet.  My mind is sharp and clear and thinking up lots of new ideas for painting, which I can now do, upright on an easel, for hours at a time.Here are two "works in progress." I'll post them again when they are finished.  There is only a couple of days work on each at the moment.Set against the taking of the antibioticsi and adjuncts, though, both of which, I cannot express too much, are needed, you need to help the process of recovery yourself as much as possible.  You can't just sit there and wait for improvements to happen, as I am sure I have said somewhere before.  I have an airwalker in one corner of my studio, which I use at various points in the day, just for a few minutes at a time.  This helps with the stiffness I can still feel if I have been sitting or standing in one position for too long.  I have found by trial and error that this suits me better than doing it all in one go.  I have taken to listening to Cuban dance music on my headphones whilst doing this, because you can get into a good rhythm and the minutes go very quickly.  Variety being the spice of life, I alternate this with scooting or cycling around the block, or the park, which is only down the road.  Both help with any residual balance problems and once you get going, the faster you move, the better you can balance.  I can't do this for too long, yet, though, partly because I panic about getting home, would you believe, but also because it tends to tire me out for a while, which hinders my painting.  Likewise with my cello.  I reckon it is good exercise for the hands, fingers and arms, but I can't do it for too long for the same reason.  I am gaining strength all the time though, so before long I will be able to do more of everything for longer, without having to choose between them.  Of course, living in a high ceilinged three storey house also gives one quite a bit of exercise before you think of anything else.  We both have studios and studies on the middle floor, but everything else is either up or down.  Perhaps I should wear a pedometer just to see how far I do walk in a day!One other thing I know I have said before is that there is a tendency to put out of your mind the really bad periods, or in fact, as in my case, just to not remember them at all.  There can be a feeling that you are not making as much headway as you had hoped.  In this regard I think a journal can be very helpful.  I can't talk!  I was keeping one at first, then got annoyed and deleted it.  I know then that I wasn't thinking about posting my experience to maybe help other people, but now I wish I hadn't done that.  David does remember everything about how bad I as, so he can help me in that respect.  I think I was so bad, actually, just before starting treatment that I wouldn't have recorded anything terribly accurately......Sarah

Comments

Sarah, they are lovely! I

Sarah, they are lovely! I am so pleased for you! Absolutely beautiful colors and depth, and I have to agree with Jim on the feminine regenerative, it fairly leaps from the image. Thank you for posting it so we can see it! Marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Oh, thank you both!  Hmm,

Oh, thank you both!  Hmm, just wait 'til you see what I have lined up next, Jim.  And Barbara, it might be my first attempt with acrylics, but three years ago I was still just about reasonable with oil paints before my spectacular free fall jump.  I just needed to get used to the speed with which acrylics dry.....Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 Ah, Sarah, what homage to

 Ah, Sarah, what homage to the feminine regenerative powers of the body, of the spirit. Your "Blue Cave" watercolor sits on my wall full of hope in the emergence from a dark inner place. These new ones are juicy and fruitful, the nourishing pulp and seeds full of the potential of growth, fecundity  and regeneration. Optimism indeed for all of us. Thank you.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

You are an incredibly

You are an incredibly skillful artist, Sarah. The colors are vibrant, detail is impressive, I can't believe it is your first attempt in acrylics. They are powerful and optymistic. Congratulations!

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

Well, I finally finished my

Well, I finally finished my first two totally acrylic paintings, measuring  24" x 48" and 42" x 36" or thereabouts.  They took a bit longer than normal because the medium took  bit of getting used to, but here they are, "Vessel" and "Cavern". Funny thing, but I started out relying a lot on the rest David made for me to attach to my easel when I first started going rapidly downhill, just before it got so bad that I couldn't paint at all.  When I first started doing these paintings I was nervous at having a big white canvas stuck in front of me again rather than a sheet of paper laying on the table. It had been three years since I had been able to do anything like it.  My arm was unused to the position and really needed the rest for support.  Now, though, although I will use it for closely detailed work I more often just rest on it with my left hand while painting with my right.  I had intended to gradually raise the height to get me used again to painting at eye level, but in the event, I didn't need to.  If I do paint all day, though, I feel it when I come to eat my dinner.....Sarah

                                            

 

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

Yup, that's the one! 

Yup, that's the one!  Actually I have made more mistakes in the other direction, so I always now check on any phrase written by either nationality which I am not sure about.  Saves embarrassment later on.  And no, I won't tell you what was the most embarrassing thing I said to someone!Sealed.....Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah-here's the

Sarah-here's the definition--hope it's the one you foundTongue out

Homegirl- a fellow female member of a youth gang. Ok, maybe I was pushing it with the "youth" part!!

Lexy

--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi

I had to look that one

I had to look that one up!  Could have been taken the wrong way by someone like me!Cool
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Anytime homegirl--I got

Anytime homegirl--I got your back!Cool
--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi

And thank you both, Lexy

And thank you both, Lexy and Karen (LifeontheFence.)  I just thought it better and safer to say that here!.......Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

for Marie, some solid

for Marie, some solid information.  When David and I first met I could walk in the hills all day, say 25 miles and be tired but only nicely tired so that I would sleep well.  I could cycle three times that distance easily.  This would have been in 1994.  By 1999, when I first started to show signs of progression, we went on a walking holiday in the Carmargue and the Causse Noire.  I suddenly found that it was really hard going, dragging my feet, especially the right one, no energy even to walk five miles, scared stiff about coming down the steep and narrow paths.  This had never bothered me before, I had always been fearless.  I would walk for miles in London, rarely taking the tube or bus.  For KitKat's information, when I was studying at the Slade, it is just round the corner from the British Museum, but I used to cycle in from south of Clapham Common, about eight miles through the traffic.

By 2001 I was really struck down.  At my worst I had to hold on to David just to get to the corner shop, about 50 yards, then I had to support myself on the shelves.  I did pull back a little from this, but to walk downhill to the river, about 3/4 0f a mile was after that the best I could manage.  A little while before I had been given a diagnosis of congenital spinal stenosis by an orthopaedic surgeon and I chose to stick with this because I had a 30 percent chance of getting totally better.  I could still cycle a reasonable distance at this time, but then vertigo started up so I couldn't even do that: I kept not turning corners quickly enough and crashing into hedges.  Slowly my walking was getting worse again, until it was back to the 50 yards thing. Then finally my right arm gave out, so I had to see sense, and a neurologist.  Yes, I did walk back from the hospital that day, but in three stags, with long breaks between, David's arm at least half the way and other people's arms after that, then the last bit a lift from my hairdresser.  I was wiped out but obstately determined not to give in.

But now it is 2006.  Today, although it was barely above freezing, I decided to go out and see how much I could do before getting too tired.  I took my little scooter, like a full-size child's scooter with pneumatic tyres and went a distance of somewhat more than two miles both scooting and walking. I wasn't at all tired when I got back, and was not dragging my right foot behind me, which is an improvement.  Better to do that without fatigue then slowly build on it, I think.  We live at the top of an admittedly not very high hill, but when you always have to climb the last bit, you feel it if you are tired.  I feel that I have much more stamina recently, but crowds of people bother me.  Also if I cycle, I can go farther, but a soon as I stop, I start to panic and can't start again.

I walk better when I am by myself for the same reason.  I could probably bumble about for hours by myself, taking things at my own pace, but having a friend alongside can completely throw me.  I'll get over that, but the main thing is the strength and stamina is coming back.  I can do everything for longer and if I do get tired, a rest of about half an hour and I am ready to go again.  Warmer weather should be coming before long and yes, I should keep a record, I'll try.  I am doing very much better on the airwalker, though, with my Cuban soundtrack!  I used to be very shaky and wobbly when I finished, but no longer.  I am standing taller as well, with no tendency to stoop or hunch up my shoulders.  Before long I will be hill walking again.

I must admit that getting back my painting abilities have often taken priority, they had to, but I've got all that back now, so watch out!............Sarah 

(Slightly edited "But now it is 2006........." on Jan. 25th.)

 

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

Thanks Sarah we all want to

Thanks Sarah we all want to know how you are doing now, your the band leader! Well I have to ask you to forgive me but can I ask you say you tire out after riding your bike for how long and does this seem to be lessening so that you see you are recovering normal stamina? And you have not documented how far you can walk. How far can you walk? I seem to remember that David in your original story sid you two were a couple of walking buddies, is that back in your future or even in your today? I think it might be interesting for you even now to keep a diary Sarah. I be things are still coming back
Marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Oh Sarah...your heartfelt

Oh Sarah...your heartfelt writing has brought me tears of joy!  How I wish we all lived just 'round the corner so we might all venture off on bikes together.  Wouldn't that be fun?  Most friends of mine, bless 'em, don't really understand my hesitance in embarking on longish journeys. 

But we would all understand each other, hmmmm?

This brings back memories of visiting London just a few months after the msi dxi.  We stayed at a hotel near Holborn Station, and I actually forced myself to walk to the British History Museum from there(!)  More than just a few blocks as I recall--and a  somewhat treacherous, attention getting journey, but very fulfilling.  Not sure I could do it today, but I am regaining stamina, and the nerve, to try again someday soon!

KK2  :)

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

Eloquent, Sarah.  And a

Eloquent, Sarah.  And a technical note-  the  text is NOT large.  I usually have to enlarge eveything of yours because it is TINY on my comp.  How about others? 

I so identify what you say about not remembering much.  There are so many of us now that recovery - at least some- is becoming a recognized result. 

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Sorry about the rather

Sorry about the rather large text size, but if I try to change it, it turns purple!!!
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.