Spring Meeting

The London Group of the SSO had their spring meeting this past Saturday.  There were approximately 18 people in attendance including a couple of new members which was encouraging.  

Our speaker was Sally Bell, B SC. Pharm., Rheumatology Pharmacist, St Joseph's Hospital.  Sally gave a very informative talk on the various pharmaceuticals used in the treatment of Raynaud's and GERT, two of the more common manifestations occurring in scleroderma patients.  

I learned a lot but a couple of things stick out in my mind,  both of which might be helpful to readers of this blog so I'll share them.  The first concerns diet which is an important factor in conjunction with medications for controlling reflux.  The fact that surprised me though is that high fibre diets, something we hear about frequently these days, is not always a good idea for scleroderma patients, in fact it can be counter productive.  I did a little research and there is some evidence that a high fibre diet in patients with scleroderma can actually cause severe constipation or bowel obstruction.  So beware.

Another interesting discussion centred around calcinosis.  Someone brought up using salt water to ease the skin  eruptions which can accompany calcinosis and one of our members, Jill,  informed us that this has been very helpful in her case but that one should avoid using table salt containing iodine which can further irritate the area.  Instead, she recommends pickling salt which has no iodine.  She suggested using approximately one tablespoon of pickling salt per gallon of water.  So there you have it.

Our next meeting will be on September  26, 2009 at which time we will be hosting the AGM of the SSO.  Dr. Janet Pope will be our speaker.

 

The Next Step

In a previous post I talked about taking up guitar again even though my hands are unable to play in the normal way - all I can use are my two thumbs.  Well, yesterday, I took the next step.  I was at my daughter's for dinner and as we sat around chatting afterwards, two guys showed up with guitars.  The plan, apparently, was to get me into my son-in-law's studio for a jam.  Feeling somewhat nervous about playing with all these experienced musicians, there were four of them present, I made my way up the stairs to the studio where they set me up with my guitar and an amp and before I knew what was happening we were all making music together.

There were two acoustic guitars, an electric bass, a drummer and me on slide.   Well, I had the time of my life.  This was a first for me and something I'd always aspired to.  It's now more than 24 hours later and I'm still pumped about the whole experience.  The guys were very supportive and did everything they could to make up for my lack of confidence (and talent) with the result that I even surprised myself.  We must have played over a dozen songs and not only did I play accompaniment on all the songs but I took my turn soloing on every one of them.  

If someone had told me a year ago that this would be possible I never would have believed them.  In the eleven months since I bought my first lap steel, I have progressed far beyond where I was after 20 years of playing without any physical impairment. Instead of being a hindrance,  scleroderma has actually enabled me,  through the adjustments I made to my playing, virtually starting again from scratch, to surpass anything I thought was possible five years ago.  Obstacles can indeed be turned into opportunities for growth.  I have achieved a life long dream not despite of having scleroderma but because of it.  How's that for turning things around?

So what's  next?  I am now that much closer to working up the courage to play at the scleroderma concert in June.  Still not making any promises though.

ASMP

ASMP stands for Arthritis Self Management Program.  I won't go into all the details because they are available here.

I would, however, like to take this opportunity to promote the program.  For the past three years I have been an instructor in this program, delivering it at the local Arthritis Society office twice a year not only to people with arthritis but to a wide range of individuals with other diseases as well, including scleroderma.  During these sessions I have seen dramatic changes in participants' self confidence and their ability to take control and manage their disease.  And even more encouraging is the fact that veryone who has completed the program has been extremely positive about the experience.  

I urge you to investigate the link above and consider taking the program.  I promise you won't regret it.

The Benefits of Physiotherapy

Today, Thursday, is physio day.  For the past three years I have been going to St. Joseph's hospital here in London for a half hour physio session.  This is supplemented by having my support worker repeat the stretches in my home, also once a week.  

There is evidence that regular physio sessions may be able to maintain the range of motion scleroderma patients have in their joints and, in my case at least, it seems to be working.  Twice a year, usually in the spring and fall, my physiotherapist measures the range of motion in my major joints and overall results indicate no significant change.  Keep in mind that these measurements are not terribly accurate so there is some allowance for measurement error which is why I use the phrase 'no significant change' as there are minor variances from time to time.

Of course, regular exercise is important as well in helping maintain mobility.  But don't forget to check with your doctor and physiotherapist if you have one before beginning a program. 

Time to go catch my ride so will close for now.  Have a great day.

Happiness and the Brain

This video includes information on how meditation affects our mood for the better and is well worth a watch.

Meditation and Scleroderma

This could just as well be titled Meditation and ______ (pick a disease) because meditation has been proven to be effective in the treatment of any number of chronic diseases, arthritis  being the most studied.  Jon Kabat-Zin is undoubtedly the best known researcher in this field and has authored several books on the topic as well as founding The Center For Mindfulness at the University of Massachusetts.

On a more personal level, I have been meditating for about twelve years and I am convinced that this practice has been instrumental on both the psychological and physical levels.  Firstly, it has been the most important tool I have for stress reduction.  Of course I'm stating the obvious when I say that having a chronic disease such as scleroderma can be extremely stressful.  Meditation can help by making you more aware of your emotions.  The more you meditate the more you are able to see negative emotions as soon as they arise and, like the proverbial  snowball rolling down the hill, it's easier to stop emotions at the early stages before they grow into something that's harder and harder to control.  Meditation accomplishes this through the practice of watching and quieting the mind.  There's nothing mysterious or mystical about it. At the simplest level, it's sitting quietly, paying attention to the breath, watching distractions, both internal and external, as they arise, acknowledging them and then going back to watching the breath.  This ' watching of the mind ' make us more aware of our emotions and how they operate and we thus gain more control over them.  

As a concrete example, I am constantly dropping things on the floor because of poor mobility, strength and grip in my hands.  This can be doubly frustrating because I am unable to bend over to pick anything up off the floor which means every time I drop something I have to go get my reacher to pick it up.  Now this often becomes frustrating with the potential to make me angry which, in turn,  could lead to a high level of stress.  But it doesn't.  And that's because I am able to spot the anger at that very first instant just as it begins to arise and before it gets any worse, I simply acknowledge it, stopping it in its tracks before it takes me over.   Without my meditation practice I am absolutely certain that all the hurdles I face each day would make my life much more unpleasant.  

It's also common knowledge that stress contributes to the level of pain that we experience.  Meditation, as noted above, can decrease stress and that means less pain.  It's as simple as that. 

Again, based on my own experience, I believe that it may be possible to directly influence things like Reynaud's.  Initially my Reynaud's was quite painful and I would spend several hours a day holding onto one of those microwavable heat bags to keep my hands warm and ease the pain.  But then I started a visualization practice, a form of meditation, where I pictured the blood flowing through the vessels in my hands and after I'd practiced this for some time, I can't be more specific than that I'm afraid, my Reynaud's symptoms started to lessen to the point where I no longer needed the heating pads.  That was over three years ago now and nothing has changed.  Of course this is totally anecdotal and not proof by any means that it was my visualization practice which caused of the lessening of my symptoms.  On the other hand, it certainly didn't do any harm and I continue to use a modified version of this practice for other symptoms.

Sorry for being so long winded here but, as is probably apparent, I truly believe that meditation can compliment the other treatment options available to individuals with a chronic disease and the only side effects are that you will be a happier person for it.   If you've never tried it, please consider giving it a chance.  You've nothing to lose.  Here's a link to some simple guidelines for establishing a meditation practice.

Quarterly checkup

Had an appointment with my rheumatologist, Dr. Pope, today.  Nothing new really aside from some very slight softening of the skin on my forearms and backs of my hands.

The meeting was fruitful in other ways however in that Dr. Pope has agreed to speak at the AGM of the Scleroderma Society of Ontario in September.  She also agreed to do a spot on the local cable channel to promote scleroderma awareness and, finally, to distribute a letter composed by one of our members to new patients promoting the local branch of the SSO.

This is, indeed, one very special lady.  Not only is Dr. Pope in demand by the international scleroderma community but she always finds time to do what she can locally and all this while raising six(?) children and maintaining a very busy practice at St. Joseph's Hospital here in London.  We are very lucky to have her.