Always an Anecdote

Tell us what you are using to treat your MS-- and how you are doing.

Postby mrhodes40 » Mon Mar 20, 2006 5:57 pm

8O 8O wow. I could not do any such a thing I'd have to balance. Wow. I am impressed.
marie
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Postby Katman » Wed Mar 22, 2006 7:14 am

Marie,

Your time will come, and it won't be too long (however long THAT is) because you know that you are "moving right along" again because you are plodding through the hard stuff!

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby SarahLonglands » Thu Mar 23, 2006 11:17 am

.................and its not like I would have dared even try until last, um, June, I think. But it is a dual purpose machine because you can just push it and carry some shopping in the front basket (not shown.) But either way, I do have to remember that we live on top of a hill, so wherever I go, the return journey is uphill. :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby SarahLonglands » Sun Apr 02, 2006 10:18 am

Now, this is a totally neurological improvement which I thought I should post before I forget: I cut my toenails this morning, which seem to be growing as fast as my fingernails and hair. For about seven or eight years, since my MS started to become progressive, especially my right foot has been very hyper-reflexive, which made cutting toenails quite difficult. Since starting the antibiotic treatment I have noticed this getting gradually better, disappearing totally in my left foot, slowly diminishing in my right. This morning I noticed that the only hyper-reflexive thing about my right foot was the big toe, and that by no means drastically.

Show that to the neurologist! :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Nearly three year up-date

Postby SarahLonglands » Tue May 23, 2006 4:13 am

May 10th 2006 it was three years since I had an appointment with “my” neurologist which three months later lead to my diagnosis of very aggressive secondary progressive MS, after years of being totally able to ignore that there was anything wrong with me. I had been finding difficulties on and off for several months with my right arm, but this would wax and wane somewhat and I was still able to carry on working on my commission for the Queen Mary 2 Cruise liner, although I was never totally happy with these works. Still Cunard and the art consultants in charge were happy apart from the backgrounds I added to the two Arum paintings at first. I really couldn’t understand why they objected to the dark, stormy skies!

Image


I reluctantly changed them into fresh green trees, but the clouds were really more descriptive of my state of mind at the time, not that I would admit it, but I really should have seen that such clouds were not going to go down well in two of the six penthouse suites of a luxury cruise liner which was going to see many mid Atlantic storms.

I had a really bad relapse a year and a half previously which had left me just about able to stand but not much else. I had improved somewhat from that and was unwilling to believe that my illness had become progressive, which it certainly had, because after that there were no more relapses, just steady deterioration.


The neurologist obviously saw what I was unwilling to and put me down for an MRI but didn’t rush it through, giving David coded indications of what was in store for me and that he “should make arrangements……”. Over the next two and a half months I became unbelievably worse, but I didn’t see it. By the time of my MRI and diagnosis I still thought I was getting better. I couldn’t use my arm, so couldn’t paint, I could hardly walk, certainly not unaided, but I couldn’t see that.



Fast forward to the present and I am better than I could have imagined when I started treatment. This does not mean that I am completely as recovered as I would like. My arms are fine except after a long day painting my right arm can be a bit tired when it comes to, say, slicing through a fillet steak neatly. My legs are not as good as my arms, I don’t suppose they ever will be because there was more longer term damage to make right and new pathways always will take longer to travel along. However, I am upright and can walk a couple of kilometres without rest or assistance most days, and I am still improving. For some reason I walk best by myself. What I am most pleased about at the moment is the fact that I am finding my thought processes are so much better. I am finding inspiration is coming for my painting in a way that it hasn’t completely since my mid twenties. I know what I want to do, how to do it, what size to best do it and am not afraid of size. I worked out how to do acrylic painting relatively easily, when I decided to change from oil painting in order to avoid organic solvents, and how to mix that notoriously difficult colour green, so that it looks alive and vibrant, and so I am happy! A few of the paintings I did as watercolours when I first started to paint again I am going to redo as 4ft 6ins plus tall acrylics, because they really should have been this big to start with, except I couldn’t manage anything other than a comparatively small watercolour. This is in order to give the effect, say, of caves towering above your head, as here:

www.avenues-of-sight.com/bluecave.jpg

I got the idea when putting my most recently finished work upright on my easel and raising it to the height it would be once hanging on the wall. This painting of a fig synconium is called “Isola Capri” and measures 52 inches tall.


Image


Returning now to the QM2 penthouse painting shown above I have now decided to paint a version of this, bigger at 5ft wide, reinstating the stormy background, complete with rays from the setting sun shining above the clouds. This is partly because of various comments I have received about rebirth, regrowth and trumpets heralding good news. Well, I didn't have it then, but now I have the good news, so why not trumpet it?
Sarah
Last edited by SarahLonglands on Tue Oct 03, 2006 1:37 am, edited 2 times in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Katman » Tue May 23, 2006 6:34 am

Sarah,

I am so happy for you and I can understand what you are saying because I too have come back from the very dark depths to the sunshine. I understand the way you are driven to paint your finished canvas as you must see it before you have painted it. We have reemerged from the nightmare into what can be a magical world, thanks to you and Drs Wheldon and Stratton.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Midsummer update

Postby SarahLonglands » Sat Jun 24, 2006 11:07 am

Well, a couple of weeks ago I decided to see how far I could walk and remain reasonably upright at the end, meaning that at the end of the walk I wanted to be able to climb our quite tall front steps, or up the steps to the higher level of the Rowing Club, sit down for twenty minutes and then get on with what I wanted to do. For this exercise I decided to stay fairly close to home, doing a wide circular route which could be cut short at many stages when I felt I had done enough. The first stage involved a walk along footpaths and cycle tracks, coming back to our road, but slightly more out of town. I then crossed the road and walked to the park, a wonderful nineteenth century place with many walks shaded by old, majestic scots pines and cedars. About halfway round there is a cafeteria where I could have stopped for a break, but the weather was getting much hotter all of a sudden, so I decided to just cut it short, walk down the wide promenade which dissects the park and go home. Back home, I climbed the steps fairly easily, brought in my "Puky" scooter, which I had taken in case I wanted to do any shopping at the Italian deli (it having a roomy basket on the handlebars,) sat down for twenty minutes or so whilst having lunch and continued with my painting.

I guessed it was about 3 km, but didn't measure it because I had other things to do. When I later told David where I had been, he measured it and informed me it was more than 4.5 km. I didn't believe him so I had to measure it myself, and he was right. I'm glad I did cut it short at that point, because that was the first day the weather became seriously baking hot and carried on for more than a week. I wasn't wearing any protection because when I set out it wasn't even sunny. Luckily I wasn't taking any abx at the time, so I didn't burn. I did end up walking a bit funnily for a few days, though, and I misbalanced a large canvas on my easel, which fell on my head. Luckily, having changed from oils to acrylics, the paint dries quickly, so I didn't end up with streaky hair. It has been known!

The moral of this tale is, look at the weather forecast before I try that again. 8)

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby gibbledygook » Sun Jun 25, 2006 10:30 am

Wow - that is a long walk - fantastic. It's funny how after completing a long walk the legs somehow need an extended rest. I just walked 1.25km non-stop in a hazy hot London and then needed to rest but after half an hour it just didn't feel as normal as when I headed out. And the faint tingling in my left foot which used to be painful burning also reappears after exercise/long walks. Well, walks. 8)
Incidentally I keep forgetting (wilfully?) to take any of my vitamins - but they make feel sick!
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Postby SarahLonglands » Sun Jun 25, 2006 3:36 pm

Thanks, Alex, it did rather take it out of me for a few days, though. You are right about needing an extended rest after an extended walk, but do I? No, I just sit down for twenty minutes, eat a bit of lunch and get back to my painting. Also it didn't help that it was the very same day that the weather started to become phenomenally hot here for while. I suppose it was quite a good distance compared to what I had been doing, but this should really only take an hour to do. It seemed to take me hours and hours, so still looking forward to more improvement there.

I probably would be as bad as you about taking vitamins, but luckily we both take them, so normally one or the other of us remembers. The only things that make me feel really sick are calcium, magnesium and selenium, the last one is OK as long as I sit still, which I can't, or is taken with dinner. I reckon I take so much vitamin D that I don't really need the calcium, but magnesium does help with stiffness, though. Perhaps I'll go and get some now. :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby SarahLonglands » Tue Jun 27, 2006 7:43 am

Charts seem to be catching, so I've done one of my own, but unlike CureO I won't be updating it every week: I might do every couple of months, if I make a wider one. You can see a more readable version here: http://www.avenues-of-sight.com/06-06-27-Sarah-walking.jpg


Image
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Edit to above on June 28th...................

Postby SarahLonglands » Wed Jun 28, 2006 6:19 am

............or below, depending on how you view the posts.


To quote Cureo, click refresh if you have already looked at this chart because I changed it this morning, having been slightly too optimistic as to how far I could still walk in early 2001.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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An entry not about me but my neuro.

Postby SarahLonglands » Fri Jul 07, 2006 7:23 am

An entry not about me but my neuro. I knew previously that he had walked out of the radiologist's room saying "Oh, I can't see that!" when asked to look at my new scans, many moons ago. Now, though, I discover that he meant that there was no way he was going to look to them because he hadn't ordered them and didn't want to have to think about them because they didn't show what he was expecting to see. Someone like me should just be getting worse, so how dare a mere radiologist and a microbiologist try to show otherwise.

Sarah :(
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby SarahLonglands » Tue Oct 03, 2006 2:00 am

Way overdue for an update due to pressure of work, so here is a little addition as an interim. The first picture was begun in 2002, before starting on the Queen Mary pictures, but I had to leave about 1/3 done it to do those. Then I found I couodn't paint anymore and had in any case accidentally knocked it against the sharp corner of my war desk and damaged the canvas. This year I managed to repair the damage and discovered thet acrylic works very well over oil paint, so I finished it a few weeks ago. It is called "Isola dei Pioppi" and measures 26" x 38" for those that don't understand centimetres.

Image

The second is another one started as a watercolour when I first managed to do something again, but I have just redone as an acrylic canvas measuring 34" x 52". This is called "Madder Pass." I'm sending a print of the first one to my neurologist to make him realise I still exist.......Sarah

Image
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby SarahLonglands » Wed Mar 14, 2007 11:29 am

Goodness, I didn't realise that it had been so long since I last made an update! :oops:

It has occurred to me over recent weeks that there is more to walking than the mere ability to be able to walk such and such a distance, whether unaided or using a cane. Last summer I did a walk of about 4.5 kilometres, using a my Puki scooter for balance, which is like a microscooter with pneumatic tyres. I managed to do this, but it took me far longer than it should have done and way before the end it was more like a trudge than a walk, see four entries prior to this. I realised that if I carried on doing this just to prove I could, I might well end up with arthritic wear of the joints from putting too much pressure on the left side, or back trouble from leaning too much towards the left. So, I spent the winter using the air walker in my studio, or the manual treadmill. This seemed to be a good idea because I could just do a few minutes whenever I felt that I had been standing or sitting for too long in one position, whilst working on increasingly large paintings.

Consequently I haven't even tried to walk that far again, but I want to walk further and more easily. I remember on a visit to my GP when I first started to notice a reduction in how far I could walk, in response to my complaint that I could only walk about four miles, she said: "Well, do you need to walk any further?" Well, no, I don't suppose I do, but I want to be able to. I did use to be a cross country runner, after all.

I have never used a cane, or walking stick as we tend to call them in the UK, even when I was at my worst. Instead http://www.leki.com/html/trek_main.aspI used one of my trekking poles, handle held at elbow height: The reason is, I never needed a cane to lean on, just something to aid my balance. When I was at my worst, my feet just wouldn't move forward, but a cane wouldn't have helped that. Leaning on my bike or micro scooter did slightly. Another reason for not using a cane was, I suppose, vanity: I didn't want to appear disabled. Standing still I didn't look remotely disabled, and living nearly opposite the main physiotherapy department of the hospital, I saw all manner of people using canes or crutches. I just couldn't accept that I was maybe one of them.

I was once lent a cane, or walking stick as we call them in the UK, when I was visiting somebody down the road and started to feel rather dizzy. It was the right height for me because it used to belong to her husband, but it felt rather strange and not really part of me at all. If I was going anywhere further than the local corner shop and post office, if not my bicycle or microscooter, I would take one of my trekking poles, in case I felt need of support somewhere along the line. This is all well and good, but none of these things give you a natural, balanced walk. It is better than using nothing, where after a while you either have to stop and sit down or you end up walking around like a drunkard in the middle of the day. It did occur to me, eventually, that I was not doing myself any good by being so pig-headed. Not so long ago I could go on thirty kilometre walks on vacation without batting an eyelid, with a clear, gliding step. It would be nice if I could do this again, but I doubt that I will be able to go that far, what I don't need though, is to give myself arthritis through excessively worn joints due to badly aligned walking. At the moment I have no aches and pains in my joints: I want to keep it that way.

So, I plucked up the courage to use both of my trekking poles, even in town, if going any distance. This enables a much more upright posture and smoother gait, which is less tiring and means I can keep going for longer without dragging my right foot or feeling the need to stop and sit down. When I walked down the front path for the first time, poles tucked under my arm, I needed to pluck up a bit of courage to start using them but as soon as I did, I realised that people weren't all staring at me, wondering what on earth I was doing. I think it was one of the best decisions I have made in a long while.

My next decision was to buy a pair of Nordic walking poles, for the sole reason that the hand cradles are more comfortable for me than the trekking pole webbing: http://www.leki.com/html/nw_technique.asp Nordic Walking originated for the summer training of cross country skiers and done properly it acts as a work out for both upper and lower body. I was not intending to use them for the same purpose, but merely walking with either them http://www.leki.com/html/nw_features.asp or plain trekking poles does lead to a kind of balance which gives you a gentle work out without realising it. I bought my mother a pair of trekking poles a few years ago. She has a slight curvature of the spine which means she tends to walk with her head down. She once walked right past the front gate of her house because she didn't realise she was there: with the poles she can comfortably hold her head up and see where she is going. More recently my sister borrowed them for a walk in Snowdonia and realised the sense in using them in such uneven terrain even if you are perfectly fit.

So I plan to do regular updates on this particular thread, reporting progress, a belated new year's resolution. Not every week or necessarily every month, but just when I have something useful to say.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby SarahLonglands » Sun Mar 18, 2007 5:53 am

The following is a little conversation from CPN HELP, posted here because I think it is important not to use walking aids which effectively are anything but. Everyone who uses the antibiotics forum, especially, is trying to get away from the disease. You don't want to manage one thing but end up worse in another way.

Submitted by Michele on Wed, 2007-03-14 11:04.
Thanks Sarah for this enlightening expose on Nordic walking. I've already suggested these sticks to Ella, but at the moment she is not in a position to get much use out of them. So we will save it up for the future.

Michele: Wheldon CAP1st May 2006 for ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK


Submitted by Sarah on Thu, 2007-03-15 12:28.
Hi Michele, I suppose what made me think of it originally was an awful holiday in the Auvergne, in 1999, when I just couldn't seem to make my legs move forward very much. I could manage climb up hills, although following way behind David, but then became petrified of coming back down. David made me a shepherd's stick out of green hazel, which was tall enough to hold myself upright, but the lack of handgrip was very annoying. Two poles with hand supports are much better. I just couldn't bring myself to use them in town for a long while, but once I did, I felt so much better and walked so much further. I have always walked or cycled and wasn't happy not doing so: now I can.

I suppose people think I am awfully cowardly for not attempting to walk any further since last summer. I however think I have been very wise: I could have forced myself to go further, I could have rested every few hundred yards then got up and carried on, but I realised that walking the way I was could easily lead to physical damage which I did not previously have. I was a cross country runner as a teenager but I haven't been able to run for years. Maybe now I will be able to again, but not if I am stupid. Maybe by using on occasion the Nordic walking poles, I will after a while be able to do this, on a quiet morning in the park with nobody around!...........Sarah

Submitted by wiggy on Fri, 2007-03-16 14:20.
Sarah, Thanks for posting this as I did not know what these treking poles were but think I may put them on my list. I am about 5' 7 and my walker is too short for me, well, I never have found one tall enough and I know this can not be good for my back. When my balance gets even better I will plan to try these out.

On Wheldon protocol for MSi since April, 2006. doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004



Submitted by Minai on Sat, 2007-03-17 08:19.
Sarah,
Thanks for writing this blog. I can't wait to try out my new poles 8)

I found this page with a height calculator for adjusting them to the correct length. Worked for me : http://tinyurl.com/2sh7ek :wink:

--Minai

RRMS, diagnosed 2/04. NACi 4/06. Started Wheldon regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Pseudo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. Restarted CAP with NAC and Doxy 2/07. USA.



Submitted by Sarah on Sat, 2007-03-17 09:58.
I have just tried out Minai's link and found that I was using just the right height without knowing it: it just felt right. Being reasonably tall for a female at about an inch over Wiggy, I have found many things too low to use comfortably, even something as mundane as an ironing board, but with devices meant to aid mobility I think this is even more important. If you are using a walker which you have to stoop down to use that can't be doing you much good. What does a six foot man do? End up with a bad back, I suppose. Wiggy, I think that once you feel confident a pair of trekking poles would do you no end of good, simply because you won't be stooping forward all the time.

Good signature, Minai!.......Sarah


Submitted by Michele on Sat, 2007-03-17 10:07.
Minai, I echo Sarah's appreciation of your signature. Its great to hear that there is no new disease activity. That is all you need to keep you going. Hope things go smoothly from now on.
Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK




Submitted by katman on Sat, 2007-03-17 15:03.
Good blog, Sarah! And here we are already EXPECTING Wiggy to get well enough to NEED something besides a walker! Who ever would have thought someone already that far down the road would discard her walker? We would - it has happened before! Why not again?

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 39 pulses NC USA



Submitted by mrhodes40 on Sun, 2007-03-18 20:55.
Oh oh, me too! I use walking poles too and they help a lot. Old ski poles will do for a trial to see how you like it but the gait is really the trick. Thanks Sarah for the great link to the site that explains how to do it accurately. I had the benefit my sister's poles when we were on Hurricane RIdge and she already knew how to use them so I got her instructions. My experience was a surprising one of discovering that immediately I was walking much more upright than usual, with a nice cadence from the arms and legs all moving, this caused my upper body to be "lively" rather than locked as it usually is in my walking. It seemed easier to walk by a good bit. I can't say enough good about these kind of poles. Please get them or at least borrow some old ski poles or buy some at the Goodwill for a little trial. I bought my own pair of actual poles at Big 5 for 10 bucks per pole (apparently some people only want one!). THEY ARE GOOD STUFF marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tinii 2x month, all supplements. "Color out side the lines!"
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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