Almost There

I won't go into all the details, but I ended up buying another used chair from Duramed as the one they picked up Monday was beyond repair. This is a picture of the new tires with their very aggressive tread design. Should do the trick. Just a couple more minor tweaks to do, fenders and such and it'll be done. I wonder if there's a Monster Jam for wheelchairs.

Snow & Wheelchairs - Again

As regards the previous post, we've run into a bit of a problem in that one of the wheels is seized to the axle. Joe, from Tetra, has been back three times to try to remove it but no luck so the chair was picked up yesterday and taken to the shop of a dealer. they called this morning to warn me that they too are having a problem and that the cost will be more than expected. I told them to go ahead and see what they can do. After all, we've come this far.

On a related matter, London city council continues to debate the plowing of sidewalks so I fired off the letter below to a counsellor who appears to be on our side. Don't know if it'll do any good but it's worth a shot.

Dear Counsellor Branscombe,

First of all, please accept my sincere thank you for your support on the issue of plowing sidewalks, as noted in today's Free Press article on this topic.

I use a power wheelchair to get around and on at least a half dozen occasions last winter I became stuck on the snow-covered sidewalks, each time within a block of my home in the city's core. And each time, I was forced to sit there feeling quite helpless hoping that a passerby would stop to help me out. Apparently the good citizens of this city have more compassion for the disabled than certain council members as, fortunately, I never had to wait long before someone came to my rescue.

The alternative to getting stuck, of course, is to stay in my apartment but I refuse to be housebound for several months of the year. I refuse to allow my disability to get in the way of living life to the fullest and am disappointed that some on city council don't seem to understand that I have the right to do so. The same right as more able bodied individuals or those who choose to drive rather than walk.

Consequently, in anticipation of the upcoming winter and a lack of confidence that city hall understands the needs of myself and thousands of other citizens of this city, I have spent a considerable amount of money by purchasing a second used wheelchair which I am in the process of winterizing so I can continue to be mobile once the inevitable snowfall arrives. I consider myself fortunate in that i can afford to do so and realize this is not a possibility for many elderly and disabled who may be on fixed or limited incomes.

Well, I have rambled on long enough. I'll close by asking that you, on behalf of the disabled, the elderly and feeble, and anyone else who, either by choice or necessity, uses the sidewalks, continue to support this cause.

Once again, thank you for your concern and thank you for taking the time to listen to my plea.

Sincerely,

Bill Birtch

A Winter Wheelchair?

A couple of months ago, while waiting in line for an order of fish and chips, the person behind me asked how I liked my wheelchair, He then informed me that he had a used one for sale and without boring you with the details, I'll simply say that I ended up buying it. My old chair was due for new tires, overdue actually, and the batteries were getting old so I thought why not buy this one, the price was really good, and then I'd have a second chair which I could perhaps modify to use as a winter chair.

In a previous post, I lamented about how bad my chair performed in even a little bit of snow, how I'd gotten stuck several times last winter and how expensive it would be to import a winter worthy chair from the states. Anyway, I was relating this info to a support worker from the arthritis society and she told me about Tetra, a group made up of volunteer engineers who design devices for people with disabilities. I looked them up on the internet, found the local chapter and emailed them. After several emails we met and discussed the possibilities for winterizing my chair. Today I received an email from Joe, one of the engineers, who thinks he has found a solution, some larger tires with more tread which, with some minor modifications to the chair, should do the job.

Needless to say I am pretty excited about the possibility of having a chair that will allow me to remain mobile throughout the winter. These people have really been wonderful to work with up to this point and I am so grateful that I was able to find them. So, stay tuned and perhaps before too long I'll have a picture of my new beast to post.

Scleroderma and Physiotherapy

A large proportion of my visitors arrive here after doing a search on "scleroderma and physiotherapy". And although I did address this topic in an earlier post I realized that I'd never talked about the month I spent at an Ayurvedic Clinic.

Soon after my diagnosis in February of 2004 I decided that if western medicine couldn't cure me perhaps I could get help in the east. And so, after some extensive research on the web I settled on the Ayurvedic Natural Health Clinic near Calingute, Goa, India, primarily because it was the most reasonably priced at approximately $1600 Canadian for a one month stay.

I arrived in mid April and stayed for 30 days. While there I underwent an extensive holistic treatment plan including a special diet, herbal medicines and three to four different massages every day. I won't go into more details as you can find out more by clicking on the link in the previous paragraph. I will say however that the treatment was beneficial and I saw definite improvement in my range of motion and energy level.

Would I recommend this type of treatment? Most definitely. I have searched for a similar clinic in North America but found nothing comparable. Traveling to India again is not an option as the trip is simply too grueling and expensive.

Hope this helps.

GI Update III

It as been almost a month since my last update so thought I'd better add something. In general the feed continues to go reasonably well. The plan to ingest 1.5 litres of Peptamen 1.5 is a work in progress. I have increased my feeding rate to 75 ml/hour and even tried 80 for a couple of days but with an increase in bloating so backed off again. Have also experienced some bloating at the 75 rate recently and am considering doing a course of erythromycin to clean out my gut. I'll give it a couple more days to see if it takes care of itself though.

I really haven't been monitoring my intake very closely so can't say how much I'm getting on a daily basis but I suspect it's averaging about 1.25 l. Perhaps I'll make an effort to log my time on the feed, if for no other reason than to see if I'm actually making any progress or simply standing still. My weight is currently 113 lbs., up 2 or 3 pounds from a month ago, not spectacular but moving in the right direction at least.

GI Update

Yesterday was my second appointment with Dr. Howard. I had mostly good news to report in that I continue to tolerate the Peptamen 1.5 quite well, have only had 2 incidents of reflux since starting the formula 6 weeks ago ( both the result of eating too late in the day), no nausea and only minor bloating. The down part is that I've only gained 1 kg (2.2 lbs.).

The solution? Increase the feeds by 50% to 1.5 l/day. This would give me 2250 calories plus whatever I can get orally. I forsee two potential problems with this. Firstly, at my current rate of 70 ml/hour that works out to close to 21 1/2 hours that I will have to be hooked up meaning I have 2 1/2 hours in which I can go out. Secondly, I already feel full most days so an increase of 50% means I could end up feeling bloated and over full again on a regular basis.

And so, I think I will just take things as they come. It's summer, I love being outdoors and 2 /1/2 hours is just not enough time to do the things I need or want to do. I'll make 1.5 l my end goal but am not going to lose any sleep over it if I don't reach that every day. For example, if I allow myself up to 6 hours of 'free time', which sounds much more reasonable, that still means I can get 1260 ml/day or almost 1900 cal. On those days when I stay in due to rain or whatever I can aim for the full complement. Also if I ease into this more gradually, perhaps I can avoid the potential bloating problem. The other possibility is that I can increase my feeding rate but based on past experience I am not optimistic about that possibility. My conclusion, take it slow and see what happens. The bottom line is, I am not losing at the current rate of feeding so there's no big rush to get those extra calories.

My next appointment will be in October some time so that gives me a couple of months to work on the new regime. Overall, I'm feeling pretty good about it.

Canadian Health Care

The majority of people visiting this site are our good neighbours to the south in the United States so I wanted to post this in response to a video I was just made aware of in which a Canadian, .Shona Holmes, is interviewed on Fox News. Apparently she was recruited by conservative interests in the US to speak about how our health system is a failure.

This video is full of inaccuracies and leading questions and some just plain ridiculous statements. For example, this woman did not have a tumour, she had a cyst. I suggest that the word tumour was used because the dramatic effect is more powerful than calling it a cyst. Shona Holmes also says that our system is not free because we pay for it with our taxes. Well, duh, this statement alone shows how ridiculous her whole argument is. Of course we pay for it with our taxes but it's a darn sight cheaper than paying for private health insurance or worse, paying $100 000 for surgery at a private clinic as she did.

My own case is evidence that our system does work. I have never paid one cent for any of the medical expertise I have received. I currently see two specialists, a rheumatologist and a GI doctor on a regular basis, plus my GP as required. In June I spent the night in hospital as a result of my fall and it costs me nothing. I see a physiotherapist weekly and, again, my visits are covered by the health care system. Yes I pay taxes so I suppose that I pay indirectly but it's a great trade off.

And then there's my medication and formula which come to over $2000 a month. I pay $120 (based on my income), again not a bad deal. I could go on, but I think you get the idea. I get the best care possible and it's not costing me an arm and a leg nor do I need to go out and get private insurance at an outrageous price and for which I would probably be turned down anyway because I have a progressive chronic illness which is expensive to treat.

So, if you should happen to see the ads run in the US featuring this woman please keep in mind that she is one person out of 33 000 000 and the rest of us are pretty darn happy with our system. Is it perfect? Of course not, but it sure beats the alternative by leaps and bounds.

Update-July 31/09

Heard a news item on the radio this morning re this woman's case. In an interview with a medical expert, it was stated that no one has ever died from this type of cyst as it is comsidered benign and if it did become malignant she would be scheduled for surgery immediately. More evidence that this woman is definitely not credible. She is apparently now preparing to sue the government over the matter. That explains a lot.

Indulging Myself

Well, it's been almost four weeks since I began the new feeding formula so thought I'd better add an update, albeit a brief one.

The feeds themselves are still going well. I have had a couple of minor incidents of reflux but it was my own fault as I've been getting careless about eating in the evenings. For the most part though I've gotten away with it which is encouraging.

My weight remains the same. The other day, I realized that I'd been enjoying a Guinness (Irish beer) each day when I was gaining the weight so yesterday I went out and bought a dozen. There is anecdotal evidence that it helps with digestion but I don't know if anyone has ever done a study to verify this. Whatever the case, I enjoy it and the small bit of alcohol doesn't seem to irritate my GI tract so what's to lose? I know that it used to be prescribed in the hospital for people with weight maintenance problems and it was also recommended, in moderation, for nursing mothers. Of course this would be taboo nowadays but, hey, hundreds of years of Irish tradition can't be wrong can they? And after all I am of Irish heritage so I'm just being true to my roots. That's my story and I'm sticking to it damn it.

GI Update

As I mentioned last time, I am now on a new feeding formula and to put it briefly, things are going well. In fact, they are going exceedingly well so i wanted to share my experience here in case it can be of help to others.

I am now on Peptamen 1.5 and ingesting 1000 ml, or 1500 calories, per day. Previously, I was using Jevity 1.2 which came in 1500 ml bags but I was only able to handle half that each day so was only taking in 750 ml (900 cal.) and even that was causing a great deal of discomfort in the form of reflux, bloating and feeling nauseous, although I never actually brought up. This also meant that I was taking in very little food orally because eating simply did not appeal to me. Well, with the Peptamen, I not only have none of the side effects but actually am feeling quite hungry and have found myself eating substantially more throughout the day. And I have gained about three pounds so am almost back to the 110 I weighed a month ago. All of this in only nine days. From my understanding, the main difference between the two formulas is that the Peptamen is predigested so my gut doesn't have to work as hard to get the nutrients from it.

I have only made minor changes in my medication, taking two instead of one 20 mg dosages of Pariet and making sure I take three 10 mg doses of dom peridone each day. The only glitch I ran into was with the feeding tubes. After making numerous phone calls with everyone telling me something different, I finally discovered that the Kangaroo pump and spikes I was using would work with the Peptamen, I just needed to use an adapter which is supplied free of charge by Nielsons who makes the Peptamen.

And so, initial results are encouraging and with luck things will continue to go well. I remain guardedly optimistic.

GI Issues

Me emceeing at our concert

Yesterday, I saw a new GI specialist and am very pleased with the results.

First a little background though. Weight maintenance has been my major challenge since the onset of this disease. In January of 2008 I reached a new low of 93 pounds which, on my 6' 1" frame means I was basically a bag of bones. I managed to put some of that back on but couldn't get past the 100 pound mark so agreed to have a feeding tube installed in April, specifically a G-J Tube. I was delighted with initial results as by the end of June I was up to 110 pounds. But I seemed to plateau there and then started having problems including nausea, bloating and reflux. Feedings were cut back to half and I have stayed there until the present. This has resulted in no more weight gain but at least I have maintained the 110 pounds. About a month ago I noticed that bloating, nausea and reflux were becoming the norm again. And thus my visit to the gastroenterologist, Dr. Howard.

My first impression was that this was a very empathetic and gentle man and his actions proved me right. The second thing that impressed me was his thorough knowledge of his field further complimented by his clear and concise explanation of my condition and the options that were open to me all of which he put in writing for my benefit. By the end of his explanation we had been joined by two interns and finally a dietician.

The result of my visit is that I will be going on a completely new feeding regimen with changes to dosages and types of medication and I am very optimistic about the future. I have said it over and over again that if I could just get past this weight thing I would be one very happy camper. Scleroderma has affected my life in numerous ways but I no longer see any of those things as affecting my quality of life on a day to day basis as I have learned not only to cope with but overcome each one as it arose. The exception, of course, is my weight and I'll keep you posted here with periodic updates. I expect to receive all the details soon so will post early next week for those interested in more details.

(Chris Trowell, Bill Durst & David Wahl performing at our concert)

Jill Martin, a member of the London branch of the SSO put this together so I've asked her permission to post an edited version here. Thanks Jill for your enthusiasm and support in this project.

THANK-YOU!!!

We want to Thank everyone for coming and helping Us expand the Awareness of Scleroderma. The money raised at this Concert will all go to the SSO. We want to thank the Bands for donating their time and talents and to the Eastside Bar and Grill for the free use of there facility and to all the Staff. And thanks to all that have helped with the Concert and bringing this idea into reality .I hoped that all left enjoying this event and also took with them with a much greater understanding of this disease SCLERODERMA. Most of all a bit more knowledge of what we as patients deal with.And that some might just be able to recognize someone with Scleroderma now and can now say YES I’ve heard and know something about that disease.

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LAUGHTER AND MUSIC. Laughter and music have been proven to help many Chronic Diseases. It raises your heart rate and can improver your immune system and lower blood pressure and even reduce pain .Most of all one gains a Positive Attitude. Laughing reduces stress and promotes relaxation. "Laughter Can The Best Medicine." Several Universities In the USA are doing studies/surreys on Laughter Therapy. Music can sooth the Beast." BUT It also may be able to help your body as well. Studies have shown that listening to Music We Enjoy actually can cause tissues in the inner lining of the blood vessels to dilate improving blood flow. Listening to Music you Enjoy can expand blood vessels by as much as 26% and in Contrast listening to Music you don’t like can make you anxious and cause blood vessels to shrink thus less blood flow.. Both Laughter and Music have been found to have similar effects on blood flow through the body. There was plenty of both at this our Concert . It now over and it went very well .We accomplished our goals of raising some very needed funds for SCLERODERMA and building some more awareness of this disease.........We had our trials and worries but in the end it all played out well.And building some more awareness of this disease and its problems for us as patients. It was well attended and all seemed to enjoy the whole event. There was a 10.00 cover charge that was totally donated to our cause.

The day was perfect---Weather wise-- The sun was out and many attendees enjoyed the outdoor patio as well as the cool air in the Bar .People began to arrive shortly after 3:00pm and that put all our minds at ease. As we all worried and wondered would there be anyone but us volunteers and band members etc that would show up???HEHEHE.We had just enough time to put the finishing touches on everything as the first band warmed up and got ready to Rock & Roll. We were having some very talented local bands play that day Bill Durst , Chris Trowell Band ,Robbie Antone's Blues Machine . A great addition came at the end of the evening with a big finale of all the bands playing together in what they call a JAM.It brought the house a rocking to everyone's delight.The bands donated their time and talent to us that day and all gave 110% From the sound system and all the bands voices and instruments the whole Bar sounded like a big fantastic party A HAPPENING EVENT!!!

The owner operator of The Eastside Bar and Grill also graciously donated the establishment for our event.The staff worked very hard all day and with a steady flow of ppl the staff was definitely kept busy serving drinks to those that were hot and thirsty and to those that were hungry from the yummy smells coming from the kitchen.I had some of their fries they were hot enough to burn you tongue and so crunchy that they were addictive to eat.Needless to say a whole basket of fries were finished quickly at our table.HEHEHE

We also had many prizes donated and had draws during the breaks. We had gift baskets of>>Fruit and Candles and Bath Assessories and Pet doggie and Kitty Treats....Gift Certificates from a Hairdresser...Bowling night at Fleetway....Kingsmills one of London's oldest Dept Stores ....Wine glasses....And several corn/oat heating bags....T shirts and Snow fleece tops....And Tickets from 102.3 BOB FM Radio to our Annual Blues Festival In The Park.

We also had three 50/50 draws.The door prize was a Framed Print (click to see) by Bill .It was a composite made up of bits and pieces from his Graffiti Series of London Ontario .

A SPECIAL ACCOLADE MUST BE GIVEN TO Bill's family and friends and all the great supporters he had behind him . They all worked endlessly and with great enthusiasm from the beginning stages of this idea all the way to its wonderful ending.

Awareness & Fundraiser Concert

UPDATE:  Thundermug will not be making an appearance.  Sorry folks.

As the date approaches for our first ever Scleroderma event in London things have been a little hectic.  This past Saturday Soul Medix pulled out of out the line up.   By Monday  The Chris Trowell Band had stepped in to replace them and we also found out that Thundermug would be reuniting to make a guest appearance.  All of this meant designing and printing up new posters as the old ones were now obsolete.  While I was at it I also printed up 250 more tickets.   And so the line up now appears as follows:

Set 1 - Chris Trowell Band

Set 2 - Robbie Antone's Blues Machine

Set 3 - Bill Durst 

Open Jam

 

Sets are to be approximately 45 minutes beginning at 3:00 and the jam will officially end at 8:00 but who knows where it will lead.

Dermatology Online Journal: Volume 8 Number 1

The article referenced here is the most comprehensive single article I have found on systemic scleroderma (SSC).  It is somewhat dated having ben written in 2002 but, I believe, most of the information is still relevant.  It also gets very technical in sections but much of it is very readable.  Hope this helps.

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.

Scleroderma Society, London Chapter - 2009 Events

Here, we are, another year has come and gone and a new one has just begun.  I don't make new year's resolutions but there are a number of things I want to accomplish this year.

First off,  as one of two key contact people for the local chapter of the Scleroderma Society of Ontario (SSO) I am organizing  an awareness/fund raising event to take place in June to coincide with scleroderma month.  The tentative date is Sunday, June 7 and the event itself will take the form of a music concert with the help of  three or four local blues and rock bands.   I have never done anything like this before but with the help of my daughter, Lisa, and her partner Dave, who are very much a part of the local music scene, I think we're up to the challenge.   Who knows I may even work up the courage to join in on a song or two myself - no promises though.

London has also agreed to host the AGM of the SSO which we will combine with our fall meeting in September.  We are hoping that Dr. Janet Pope, our local and internationally recognized scleroderma expert, will be able to take time out of her busy schedule to be guest speaker.  

And then there's the spring meeting to plan for as well.  Exciting times for the London Chapter of the SSO.

Happy New Year everyone.