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Member Stories

You are not alone!

Wayne Parnell’s Story

Wayne has Interstitial Lung Disease related to Myositis In February of 2019, while doing a routine checkup on my liver (due to all the meds I take), it was discovered that I was in the beginning stages of liver disease. Due to the volume and type of meds I take for my Antisynthetase, we did not feel it was unusual, and decided we would just continue to monitor. I was on a 1-year recall checkup schedule at that time, and we decided to continue with that schedule. When I went for my yearly liver checkup in Feb 2020, it included an elastography, to make sure everything was still ok. This time, between the blood tests and the elastography, it showed that in the past year, I had gone from stage 1 to stage 4. At that rate, my liver would not hold out for a whole lot longer. My Doctor and I discussed the issue, and she knew that getting rid of medication was not a viable option. She said the only thing that might help my liver from getting worse would be a drastic change in diet. She said she did not expect me to do it all at once, but I should try to do as much as I could. The new diet was as follows: 1. No added sugar 2. No simple carbs (which included potatoes, rice, white bread, etc.) 3. No fried foods 4. No added salt 5. No alcohol Well, I have never been a drinker, but the rest!? I figured just shoot me now, because there is no point in living anymore. When I left the doctor’s office, I was feeling somewhat down, between the news of my liver condition and the only possible way of prolonging my life. I had decided in my mind though, that since I had always told my family that I would always fight, that I would follow the diet to the best of my ability and see how it went. My next appointment was in 3 months - surely I could do it until then. I immediately cut out everything requested. I switched from soda to diet soda or sparkling water. No more potatoes, or rice, and only whole grain bread. I started eating more vegetables and salads. I watched what meats I was eating and made sure they were lean, and more moderate portions. That was a Thursday. On the Sunday following, just a couple of days later, I went through a full withdrawal of the sugar. I felt horrible, and really Ill. My granddaughter, a nurse, was staying with us, was so concerned she wanted me to go to the ER. I decided to just stay home and spend the day in bed in the hopes whatever I was feeling would go away. I found out after when talking to a doctor that sugar withdrawal can be just like drug withdrawal; it seems I was having DT’s, (detox). Although it was difficult, partly from missing many of the foods I was used to eating, and partly due to getting used to salads and a more limited diet, I managed to stick to it. Each week that went by it got easier. I got used to the different foods and found many alternatives. On my next appointment, looking at my blood tests and elastography, my specialist was doing nothing but smiling. I was asked point blank “how did I get my liver back to stage one?” When I told her that I followed her instructions and cut out the foods she told me to, she was shocked. “No one ever does what I tell them to,” was her reaction. I did not expect such a drastic turn around. I was very happy about it though. Because of that change, it was an easy decision for me to continue with eating that way. There was a second part to this journey: Shortly after starting this new “diet”, I was also changed from methotrexate to cyclophosphamide, in hopes that it would also help with the liver damage. Well, after only 13 days, this new medication had almost destroyed my kidneys. A lucky timing on routine bloodwork showed the damage, and I was able to stop taking the new medication before it was too late. Because of this though, I had to stay off any new immunosuppression medication to allow my body to detox. This scared me, as my symptoms had always flared with even a small modification of my meds. Amazingly though, without the added immunosuppression I was still holding very well. In fact, I was feeling much better than I had in a long time. It is now 2021 and my liver has continued to stay healthy, and the liver disease has not progressed past stage one, and I am feeling so much better, and have still not added back that immunosuppression medication that I could not survive without before. I have continued to stick to my diet, although I do allow myself little cheats on special occasions. A small piece of birthday cake, a small spoon of mashed potatoes and gravy at Christmas, etc. I think that by having a better daily regimen made all the difference… This is no longer a diet, but a lifestyle change that has made a world of difference!

Sheldon Freelan’s Story

Five years ago, after having my second hip replacement, I found that it was not healing as quickly as expected. As I was sure that something else must be in play, I consulted my Primary Physician, a Neurologist for standard testing and a Rheumatologist who I new personally. The Rheumatologist referred me to another Muscle Neurologist, who after his examination and a muscle biopsy, confirmed a diagnosis of sIBM (Inclusion Body Myositis). I now realize how lucky I was to go through this process in a few short months, while the majority of people who receive our diagnosis see a large number of physicians over a long period of time, which often results in several misdiagnoses. We all look for comfort and lifestyle tips, and that Medicine will find some definitive answers over time. In the meantime, learn from those of us who had the same or similar symptoms before you. Your fingers, quads, ankles, and various other weaknesses will thank you. Without aiming blame at anyone, we quickly learn that having a rare disease is not fun, that most Physicians have little or no knowledge on the subject, and that you quickly get to a stage where you know more than most physicians you are speaking with. Helping each other seems to be our best non medical resource. So welcome to Myositis Canada. We will do our very best to keep you informed as to what is happening, and what is available to you. That includes from us directly, from our good friends at The Myositis Association, Myositis and Understanding, and anything else which we hope will be useful to you.

Don Skelton's Story

My wife Yvonne and I are what you might call "future proofers". We firmly believe in taking preventive action at the first sign of trouble instead of waiting to react when it might be overly complicated and more expensive. In keeping with that mindset, the first few instances of unexplained falls and muscle weakness led us to a neurologist and a muscle biopsy. This confirmed a diagnosis of Inclusion Body Myositis in 2011. We sold our 3-story townhouse and moved into a large apartment-style condominium. The unit required very few modifications. We purchased a lightweight travel scooter to complement my walker for indoor use. But as all IBM patients well know, it's a sneaky and progressively debilitating disease. By 2021, I was having difificulty dressing, walking and rising from any type of seat. In late 2022, my neurologist strongly recommended that I look into acquiring a power wheelchair. Acquiring a power wheelchair is not as easy as it sounds. There's the psychological aspect (you are now visibly handicapped) and the financial aspect. So began our research. Firstly, what are your needs today? Is the chair a replacement for your walker when you travel out of home? Can you no longer reach into the upper kitchen cabinets or carry dishes to another room? You and your partner have to really asses your capabilities without emotion. This can be a difficult conversation. Secondly, budget! Look at your savings, your provincial health plan and any private insurance you might have. You may also find a charity that provides some support. This gives you an estimate of what you will have to spend. Keep inmind that some funders may take several months to adjudicate your request. Next, contact a few vendors who specialize in power chairs. Arrange appointments to visit their stores or have them loan you a chair for a trial. Compile a short list of 3 or 4 chairs and talk to your occupational therapist. He or she may have insights into reliability and maintenance, after-sales service, parts and complimentary adjustments as the chair ages. Look at optional versus standard. Look at comfort and washability. The list is as long as your patience! Here are a few items to consider: *Initial price and warranty *Loaner policy *Home pickup for repairs and maintenance *Washability of fabrics *Parts availability Manoeuvrability (measure doorways, hallways, bathrooms) *Cost of options like trays or cup holders *Weight (will you need to buy a stronger ramp) *Future proofing over time *Will it fit in your vehicle One of your biggest decisions will be 4 wheels versus 6. The 4 wheel is cheaper but may be less stable on grass or slopes. The 6 wheeler costs more and has more parts that could possibly break but allows you to spin 360 degrees in a tight spot. Ask another wheelchair user, ask your OT, post a question on a wheelchair forum. Finally, when it comes to options look to the future. Imagine yourself in five years. You may not need tilt and lift today but may in the future. Also, look into how frequently your insurance will cover a new chair. This may be a crucial factor in your decision. And what did I buy? A nice orange (go McLaren!) Permobil M3 Corpus 6 wheeler with all the bells and whistles. Yes it is the same price as a small Mazda, but it has changed my life for the better. Trips to the store, the mall or out of town are now so easy to organize. Here's to another 5 years of mobility!

More stories to come...

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