Myasthenia Express
Myasthenia Gravis Manitoba Inc.
March 2006 - Vol. 1 No. 21
Next meeting is on March 16, 2006 at the St. Boniface Hospital in rooms AG001 & 2 at 7.00 P.M.
President's Report by Diane S. Kowaliuk
March 2006
Our first meeting of the year was saddened by the loss of one of our members, Rodney Hrappstead of Brandon, Manitoba. We extend our sincere sympathy to Judy Hrappstead and all her family on their loss.
Our appreciation and gratitude go to all the family and friends for their donation in memory of Rodney.
Ken Chubaty, our vice president, chaired this meeting since Diane and Wally Kowaliuk were away on holidays to sunny Mexico.
Get well wishes go out to Karen Szczepanski, who had a relapse in her Myasthenia Gravis and also to George Sinclair and Margo Mackie after successful surgeries.
Margo Mackie spoke about her Ptosis repair surgery to eliminate the drooping of the eye lids. This is usually done under local anesthesia in adults, where the surgeon must make an incision in the drooping eyelid, and carefully advance and tighten the levator muscle, which elevates the upper eyelid. Margo informs us that she is pleased with the results of her surgery.
George Sinclair informed the members of his recent laser treatment to improve his eyesight. To carry out the laser, the front of your eye is anaesthetized with an anesthetic drop, and a small contact lens is placed on your eye. The laser is considered very safe, with very few complications. George is happy with the procedure, as his eye sight is much clearer now.
Doreen and Bob Amadatsu spoke about their delightful land and cruise trip throughout Italy, Rome, Sienna and Florence. It was a trip taken once in a lifetime.
Diane and Wally Kowaliuk enjoyed their trip immensely and even though it was quite hot in Mexico, they had a great time.
Plasmapheresis
A preview
Aphaeresis is a procedure that is used in the treatment of patients with a variety of illnesses. the term aphaeresis comes from the Greek origin meaning "removal of." All aphaeresis procedures involve removing components from the blood. Efficient aphaeresis procedures have been recently developed.
The four basic components of blood are red blood cells, white blood cells, platelets and plasma. When one of these four components is abnormal in content or quantity, it can be removed by an aphaeresis procedure. Plasmapheresis is a form of aphaeresis that involves selective removal of the patient's plasma, which is then replaced by special intravenous fluids.
Myasthenia gravis (MG) is the best example of a condition that can be successfully treated using plasmapheresis in addition to oral medications. The exact cause of MG is not known, but it is known that certain antibodies present in the patient's plasma cause an inte4rference at the nerve-muscle junction. In other words, the nerve and the muscle are not communicating properly and this leads to muscle weakness.
By removing plasma and replacing it with a 'plasma substitute', it is possible to relieve some of the symptoms of muscle weakness. The best way to understand plasmapheresis is to think of it in terms of a continuous withdrawal of a small amount of blood, and then having that blood continuously returned without the antibodies that were causing the symptoms.
About plasmapheresis
A more detailed look at plasmapheresis will explain what may be expected. Starting the day before the treatment will take place; drink plenty of non-caffeine containing fluids so that your blood pressure drop during the treatment is minimized. Coffee, tea and other caffeine containing liquids should be avoided for 24 hours pre-treatment due to their diuretic action. Also, eat a well-balanced meal before coming in for your treatment.
The procedure itself begins with the insertion of a needle into a vein in each arm. Once the needles with connecting tubing are inserted, blood is withdrawn from one arm to flow into the aphaeresis machine. Once in the machine, the blood is separated into various components allowing for easy removal of the plasma and antibodies. The remainder of the blood components, red cells, white cells and platelets are then combined with sterile plasma s and returned through the other arm. Most patients have veins which allow easy blood withdrawal. However, if veins are too small for an adequate blood flow, your physician will discuss with you other options that are available to make it easier to perform this procedure.
Time needed to complete a treatment usually ranges from 1 1/2 - 3 hours. During the entire procedure, qualified medical professionals will be with the patient to monitor the treatment and to make sure the patient is comfortable. After treatment is completed, a cold drink will be offered and the patient will rest for a short period of time.
Some circumstances may require hospitalization for the procedure, while others permit this procedure to be done on an outpatient basis; this is dependent upon the patient's condition. If the patient is going home after the treatment, a friend or relative should usually accompany him/her since the patient may note fatigue
Some Frequently Asked Questions
1. Will this procedure be painful?
The patient is awake and without pain throughout the procedure, and often chooses to watch television, etc. as the procedure is performed. However, some pain may be experienced at the insertion of the needles.
2. Will any side effects occur during the procedure?
The patient should report any unusual symptoms if they occur. Some patients feel tingling or numbness in the lips or fingertips. This is caused by a substance which is added to prevent the blood from clotting while it is in the machine. If this feeling is experienced, tell the medical staff about it. The tingling or numbness can usually be quickly relieved. Some patients may feel light-headed or slightly nauseated. This feeling is usually very brief. If this occurs, tell the medical staff because this symptom can also be alleviated. Lastly, bruising or swelling may occur at the needle puncture site.
3. When can improvement be expected?
In general, it takes 3-5 treatments before most patients with myasthenia gravis improve. However, some patients will need more than five treatments before improvement is evident. The doctor will be able to explain the particular course of treatment.
4. How often will treatment be needed?
The doctor can best answer this question. Initially, some patients use this procedure on a daily basis, while others use it every other day. Occasionally, patients may require long-term therapy on a weekly or semi-weekly basis. Frequency of treatment is individualized for each patient.
5. Should medications be continued before and during a plasmapheresis treatment?
Patients should continue with their regular medications unless directed otherwise. Patients taking pills to lower their blood pressure may be asked to hold their dose prior to plasmapheresis. The patient should bring all medications to the aphaeresis unit so that they may be recorded on the chart.
Important Points to Remember
1. Have a well-balanced meal and plenty of non-caffeine fluids before the treatment.
2. The treatment will probably last between 1 1/2 - 3 hours.
3. Qualified medical personnel will be in attendance throughout the entire treatment.
4. If any symptoms are experienced, be sure to tell the medical staff so the symptoms can be relieved.
5. There will be a period of rest after the treatment ends.
6. Since the patient may be fatigued, a friend or relative should accompany him/her.
7. Avoid hot food and beverages for at least 2-3 hours after treatment. They dilate the blood vessels and light-headedness may occur.
8. Avoid sun and heat on days of plasmapheresis - especially if the weather is humid. Hot showers and saunas should also be avoided.
9. Activities such as shaving and cutting your nails should be avoided for 4-6 hours after the treatment. The anticoagulant, which is added to the blood during plasmapheresis, slows clotting for up to five hours after plasmapheresis is completed and may cause bleeding if the skin is cut.
10. If undue bruising or swelling at the needle puncture site occurs, notify the aphaeresis staff.
11. If there are any questions concerning the treatment, symptoms or medications before, during or at any time after the treatment, consult the medical staff.
12. Your frame of mind helps! Approach each treatment with a positive attitude. Be as relaxed as possible.
This is an excerpt from a publication that was written by the Myasthenia Gravis Association of Western Pennsylvania. For more information on this topic or for a free copy of the entire publication, please contact the MGA of WPA office at (412) 566-1545 or via email at mgaoffice@mgawpa.org. Please do not copy or reproduce this article without the written permission is of MGA of WPA.
Stress Notes:
We should understand the importance for our overall health to keep our daily stress levels low. We are always being subjected to pressure situations, and it is how we deal with these situations that will determine our level of stress.
It is well documented that continuous chronic stress definitely has a damaging effect on our immune system, so we need to develop coping mechanisms that ensure pressure doesn’t turn into stress.
Live an active life, it is one of the best things you can do for your health.
Learn to cope well with stress; it will help keep your blood pressure in a normal range.
Some of the factors and risks for developing high blood pressure include family history, age, ethnicity, diabetes, excess alcohol consumption, stress, obesity and smoking.
Developing good sleep habits, a well balanced diet and moderate exercise will lead to a more relaxing life.
Internet Source
Cruising versus land tours-its advantages and why we prefer cruising.
For anyone who has mobility or other health related problems there are many advantages to taking a cruise. For example in traveling on bus tour tours there are daily problems of getting on and off buses for meals, excursions and carrying in of luggage. The other disadvantage is that you could be going to as many as ten or fifteen hotels on one trip.
For a cruise the cost of a cabin, meals, entertainment and airfare can all be pre-paid in advance depending on when you book your cruise. For both the bus tours and cruise you still need medical, trip and cancellation insurance. Don’t leave home without it. The cost of the insurance depends on whether your medical condition has been stable for at least 3 months prior to taking the trip and also your age.
Depending on what cruise line, destination, or season will determine your choice of clothing. Some cruise lines offer self laundry facilities and some do not and sending your laundry can become another expense to take into account. You can do some light laundry in your room and hang it up in the shower or outside if you have a balcony. If you are going to a place where it will be summer or warm conditions like the Caribbean or the Mediterranean in the spring and summer take easy to care for clothes with some cotton in it. For cooler places like Alaskan cruises or Trans-Atlantic from New York to northern Europe take warmer clothing that can be worn in layers. Above all they should be comfortable especially when you are traveling by plane to get to the port. You should also wear comfortable walking shoes that are easy to slip on and off in case of airport security precautions. There are always at least one or two formal nights depending on the length of the cruise so take at least one dressy outfit for ladies and a suit or jacket and tie for men. You will need casual clothing depending on your activity and also for casual nights in the dinning room as they do not allow shorts.
Once aboard the ship you just have to unpack once because regardless of the choice in cabins there is lots of closet space and a small safe for your valuables. The type of cabin you choose inside, outside or balcony depends on how much time you will spend in your cabin and also determines the price of the cruise. We like to choose the balcony because I have my afternoon rest and we also like to sit outside and watch the world go by- the sunrise, the view of the islands as we come into port and also just to relax as we have our breakfast.
Regardless of which way you travel by ship or bus there are some expenses like alcohol, souvenirs, and excursions that are part of the expenses of traveling. As for the activities and excursions you choose the level and how active you want to be. All excursions have 3 different levels clearly explained-easy ( just get on and off the bus a short bus tour), moderate some walking or stair climbing and can be from 3-7 hours long and strenuous -hiking, swimming, kayaking etc. On board ship and “at sea” days there are many different activities like dance lessons, art shows, bingo etc, we did our own thing. RELAX Sometimes we would go for afternoon tea, pre-dinner cocktails or go dancing. We tried to do some walking every day as the meals and buffets were sometimes too tempting to avoid. For anyone who is afraid of getting sea-sick there are non-medical aids like sea-bands available. Of course the bigger ships from 7500 tons on you will hardly feel the motion of the ship and it is quite relaxing to go to sleep at night. All ships have certain cabins set aside for those physically handicapped- close to elevators, showers for wheel-chair accessibility etc and must be booked ahead. There should be one other person the care-giver who is responsible for that person.
We have taken both a partial bus tour and five cruises and of course cruising is the way to go for us.
Submitted by Bob and Doreen Amadatsu
How to fight Fatigue
Fatigue is probably the number one problem most of us deal with on a daily basis. The causes are not always easy to define, and even when identified may not be easily remedied. When you’re tired, the last thing you may want to do is exercise. But doing just that is really what you need.
Here’s why:1.Exercise will pump oxygen into your blood and brain. Your circulatory system and organs will benefit.
2.Exercise can help keep adrenal hormones in balance. You’ll be able to deal with stress more easily if those hormones are not swinging wildly.
3.Exercise can help normalize blood sugar so your body has a steady supply of energy from which to draw. Fatigue and listlessness can result from drops in blood sugar.
4.Exercise can help emotional stress. A workout provides a healthy outlet for venting frustrations, and as your physical condition improves, self-confidence for a job well done should follow.
5.Exercise releases the body’s natural painkillers. The chemicals, called endorphins, can create feelings of well-being and happiness, a big perk for a fatigued mind.
6.A lack of exercise is a common cause of fatigue. Making 20 to 30 minutes of time available for a brisk walk will make a remarkable difference in the way you feel.
7.Fatigue is not an illness; it is merely a symptom of an underlying imbalance, which must be addressed. High stress is a contributing factor, as the stomach shuts down when we have high levels of cortisol and adrenaline (stress hormones) being produced.
8.Lifestyle changes are helpful.
9.Eat fresh fruit and vegetables daily.
10.Drink plenty of water and avoid caffeine and alcohol.
11.Check that the fatigue doesn’t come from boredom or depression.
12.Check your thyroid, allergies and other diseases.
13.Don’t work all the time, take a holiday.
14.Enjoy your life.
15.I’ve learned that I can’t choose how I feel, but I can choose what I can do about it.
My Intravenous Immunoglobulin Treatment (IVIG)
I was diagnosed with Myasthenia Gravis in the fall of 2002 at the age of 34. My main symptom was double vision and a droopy eyelid. I also had some mild general weakness. I was put on Mestinon but instead of seeing any improvements, I developed new symptoms of slurred speech and difficulty swallowing food. I went off Mestinon and in January 2004, I had a thymectomy. Within a few months, my eyelid was much less droopy but there was no change in my double vision. By the summer of 2005, I felt my tongue giving me some trouble when speaking. When I talked to Dr. Ilse about this new symptom, he felt I was a good candidate for IVIG treatment (intravenous immunoglobulin). Not knowing anything about this treatment, I went on the internet and read everything I could find on the subject. I also called Verna Kapkey to see if she knew anyone with MG that had tried this treatment. She couldn’t find anyone here in Manitoba but did locate someone in the U.S. that had it a few years ago. Verna thought it would be beneficial to write of my experience with IVIG to help inform anyone else that may be faced with the decision of taking this treatment. So here is my experience.
My treatment schedule was four days in a row in October, three days in a row, six weeks later, in December and finally, two days in a row, six weeks after that, at the end of January. These all took place on the third floor of the Health Sciences Center and I went home at the end of each day’s treatment. My first day, I was very nervous because of the unknown. I was put in a room deemed the IV room which consisted of three big comfy chairs (two with TV’s) with people having different types of IV treatments. The IV nurse came in to put in the IV. I was given freezing to make the IV insertion a non-issue. Once the drip started I was much more relaxed. The Immunoglobulins (IG) is a clear, thick, liquid blood product. Because it is thick, after the first hour, my arm was burning and felt achy. Each day took between two and a half and three and a half hours for the first round in October and up to five hours during my January treatments. I was able to keep the IV pic in for multiple days which was my choice since I didn’t want a new poke every day.
The side affects I experienced besides the burning and aching in my arm (which subsided about an hour after each day’s treatment) was a heaviness in my chest during treatment and a severe headache which began by the second day of treatment and lasted on and off for about a week after. A week after the first round in October, I developed a rash on my hands which became very itchy. That improved significantly until I went for my next round of treatments and then it started all over again. By the time I had my last round at the end of January, my hands weren’t as severe and are getting better all the time. I also noticed that on the first night of each round of treatment, I felt very achy and flu like during the night but by morning felt much better.
It has now been almost three weeks since I finished all my treatments. The research I read said that it could take up to four weeks before noticing any improvements. I haven’t noticed anything yet but I don’t regret trying it because at least I won’t have any “what ifs”. The side affects were temporary and if there is a chance at getting better I have to try it (after much research of course). If anyone has any questions about my experience I would be happy to talk to you. Submitted by Sue Chamberlin
Myasthenia Gravis Manitoba Inc. chapter meetings will be held on March 16, 2006 & May 18, 2006 at 7.00 P.M.
All meetings will be held at the St. Boniface Hospital, 409 Tache Ave, Winnipeg, MB in rooms AG 001 & 2
Please try to attend the meetings as your presence and impute is beneficial to all of us.
Kyle MacNair, a pharmacist will be our guest speaker.
Our chapters Bake Sale will be held on October 6 & 7 2006 at Polo Park Mall. Volunteers will be needed.
The third edition of the book, You, Me and Myasthenia Gravis, by Deborah Cavel-Great has been printed and ready for sale.
The Canadian Congress of Neurological Sciences (CCNS) annual scientific meeting will be held on June 13-17 2006 in Montreal Quebec.
The Canadian Congress of Neurological Sciences is an affiliation of four national societies for neurology, neurosurgery, and related disciplines, who share a common interest in the functions and disorders of the human nervous system, and who work together to achieve common goals.
Resource Person
Anyone needing social or health care services or any of the wide variety of organizations in our community, contact our resource person for information.
Doreen Amadatsu at:
888-8628
Literature
If you, or someone you know who has Myasthenia Gravis and needs information on the illness, we do supply literature, in the form of previous articles, brochures, etc. for members and their families. Contact:
Verna Kapkey at: 582-5456 or mginc@mts.net
Please note
This newsletter is intended to provide the reader with general information to be used solely for educational purposes, and that any medical views expressed in this newsletter are those of the individual author and do not reflect any official position of the Myasthenia Gravis Manitoba Inc. Chapter.
Always consult your physician or health care professional for medical advice.
Our drug alert card has been printed. “Drugs that cause or worsen the symptoms of Myasthenia Gravis”.
If you have not received this card, contact Verna Kapkey at 582-5456 or mginc@mts.net