Myasthenia Express

Myasthenia Gravis Manitoba Inc.

March 2007 - Vol. 1 No. 23

 

Myasthenia Gravis - Manitoba Inc. Chapter

President: Diane S. Kowaliuk

Vice President: Ken Chubaty

Secretary: Gary Parker

Treasurer: Maureen Silk

Telephone Committee: George Sinclair, Mary Ross, Maureen Silk, Doreen Amadatsu

Fund Raising: Verna Kapkey, Sandra Penner

Hospital Visiting: George Sinclair

Social Committee: Gordon Mackie

Newsletter Editor: Verna Kapkey  1-204-586-6784

Assistant Editor: Connie Chubaty

Membership & Resource: Doreen Amadatsu

Video Production: Gary Parker

Coffee Committee: Connie & Ken Chubaty & Amanda

Next meeting is on March 15, 2007 at the St. Boniface Hospital in AG001 & 2 at 7.00 P.M.

 

Presidents Report by

Diane S. Kowaliuk

March 2007

Once again we are into another year and I must say the support and commitment by our members was absolutely fabulous in 2006 and I hope it continues into 2007.

To reflect on our accomplishments in 2006 it was a very active year with guest speakers and a tremendously successful bake sale.

In January 26, 2007 we had our Christmas Party at Club Regent Casino and the food was absolutely fabulous and we all enjoyed each other’s company. The scenery and excitement at the casino was very interesting. Sorry to say none of us left as millionaires, but we tried.

In May, September and November 2007, we will be having guest speakers, And if any member would like to recommend a special guest speaker, please contact the executive to arrange a suitable date.

March 2007 we will be brainstorming to determine our plan of action for 2007 and regroup as a chapter to share our new experiences with our current treatments. It is very helpful to the new members to hear the life experiences and receive comfort and support from our members, so please make an effort to attend and provide moral support.

If you cannot attend the meeting and have information you would like to share with the members, please send this information to the address above or email to mginc@mts.net

Our Website address is: http://mginc@mts.net
 

Myasthenia Gravis

Foods to avoid

Question:

Could you please advice on what foods etc to avoid with Myasthenia Gravis. I cannot find any information on your site. Many thanks.

Answer:

I do not know of any specific foods that may worsen myasthenia. Avoid foods heavy in magnesium if possible. A multivitamin everyday is a good idea and basic nutrition, with servings of fruits and vegetables, should help with overall function. If you are having trouble with swallowing with myasthenia, I would recommend avoiding thin liquids and "sticky" foods (i.e. peanut butter, white bread) as these may be hard to chew and swallow.
 

Myasthenia Gravis

Any psych problems r/t myasthenia gravis?

Question:

Can a person w/a dx of myasthenia gravis & assorted medications exhibit any s/s of paranoid ideation r/t this condition or is that being caused by another problem?

Answer:

Myasthenia gravis, by itself, is purely a disorder of the connection between the nerve and the muscle, and therefore should not cause psychiatric problems. Immunosuppressive treatment including steroids can unfortunately cause a multitude of psychiatric problems. Depression, mania, paranoia and even frank psychoses can be brought about by prednisone and other steroids. The acetylcholinesterase inhibitors should have minimal effect on the central nervous system and should not cause significant psychiatric problems. It can also be a separate problem. Bring it to the attention of the treating physician—psychiatric complications can impair the patient from receiving appropriate and maximal treatment, especially if the patient becomes non-compliant with meds.

 


 

Prednisone and acid reflux

Question:

Will over the counter medicine for acid reflux be alright to take with prednisone and mestinon? I only take the prednisone 7 days a month, the mestion every day.

Answer:

Prednisone can definitely cause gastro esophageal irritation and heartburn. The over-the- counter antacids are safe to use; most of my patients on long-term prednisone are on one of these drugs (like Zantac, Axid, or Pepcid).

You might want to talk to your doctor about stronger medicine than just over-the-counter.

Myasthenia Gravis

MG and shingles

Question:

I have MG and am taking cellcept. I THINK that I have shingles and have an appointment to find out the definite cause of the rash next week. Are myasthenics taking medications that suppress their immune systems more likely to have shingles? If it is shingles, what prescription medications can myasthenics USUALLY take that will not exacerbate their disease? Thanks.

Answer:

Yes, immunosuppressant’s cause people to be more likely to develop shingles.  Turning down the immune system likely allows the virus to reactivate.  Certain people are also predisposed to shingles, especially people with chronic disease that suppresses the immune system (myasthenia for example).  Acycylovir, valacyclovir, and famciclovir can all be used and are relatively safe for myasthenia.  But you should talk to your doctors as acyclovir can interact with some immunosuppressant’s.

Ask Your Pharmacist

Your pharmacist is your medication expert and can provide advice and information on a wide range of health issues.

Question:

My doctor says I have high blood pressure, but I feel perfectly normal.

High blood pressure, or hypertension, is known as the “silent killer” because there are usually no symptoms until a person develops a complication of the disease.

What is high blood pressure?

A certain amount of blood pressure is needed to push the blood around your body. If the pressure is always too high, then you have high blood pressure.

What is measured when my doctor checks my blood pressure?

There are two numbers that are recorded in millimeters of mercury (mm Hg) when you or your doctor checks your blood pressure. The first number is a measure of the pressure when your heart is pumping and is the “systolic pressure”. The second number is a measure of your blood pressure when your heart is filling with blood and is the “diastolic pressure”. Blood pressure is reported as the systolic pressure “over” the diastolic pressure. For example, your doctor may say your blood pressure is “140 over 100”.

Am I at risk of having high blood pressure?

In more than 90% of cases there is no known cause for high blood pressure. You are at a higher risk of having high blood pressure if you fall under one or more of the following risk factors.

What’s so bad about high blood pressure?

High blood pressure is one of the major risk factors for the development of life-threatening complications including:

How can I control my high blood pressure?

There is no cure for high blood pressure. Therefore, it is important to maintain a healthy life style by:

For more information consult your doctor or your pharmacists.

Helpful steps to better health

Educate yourself about your illness. Knowledge is power. Learn about treatments medicines and research that is being conducted. Join a support group.

Practice the four basic steps of a healthy lifestyle. These rules will improve your chances of living a productive lifestyle despite your chronic illness.

Don’t smoke. Maintain a healthy body weight. Eat a balanced diet. Practice a daily regimen of physical exercise.

Practice mental exercise. Continue to study and learn. Conduct research on your disease. Find a new hobby or a new interest. It can be energizing, fun and productive.

Balance rest with activity. Adjust your schedule to accommodate naps and more hours of sleep. Be involved with life and people as much as possible.

Interact productively with your doctor as an active partner in the management of your chronic disease. Express yourself if you have doubts about any medicine or treatment.

Maintain a positive attitude. It is not so much what happens in your life, it is what you do with what happens in your life that is important. Strive to live a productive life.

Minimize and manage the stress in your life. Avoid getting yourself into extremely stressful situations. Take control of stress rather than letting it control you. This helps protect your immune system and helps to combat your chronic disease.

Don’t focus on your chronological age. Enjoy your family and friends, and get involved in activities and view your age as positive and keep moving forward.

Don’t isolate yourself. Arrange interaction with other people. Be stimulated by conversation and laughter. Stay informed on what is going on around you. This way you can always help others.

Don’t stop looking for solutions to the problems you face with your chronic disease.

Of all the “steps” this is the most important, do not stop investigating what’s out there for you in the form of treatments and approaches to managing your disease. It is part of taking charge and taking ownership of your disease.

Accept your chronic disease as part of your life rather than focusing on it as a barrier to your getting the most out of your life. Acceptance is a major factor in improving your health status.

Attempt to find mental, emotional and spiritual comfort through meditation, prayer, reading and discussing your needs openly with family and friends. Stay in tune with yourself. Remain mentally active and socially involved.

Internet Source

Myasthenia Gravis

Chapter Meetings

Myasthenia Gravis Manitoba Inc. chapter meetings will be held on

March 15, 2007

May 17, 2007

All meetings will be held at 7.00 P.M. at the St. Boniface Hospital, 409 Tache Ave, Winnipeg, MB in rooms AG 001 & 2. Emergency Entrance at the rear of the hospital.

The third edition of the book, You, Me and Myasthenia Gravis, by Deborah Cavel-Greant, is ready for sale. Contact Verna Kapkey at 204-586-6784 or mginc@mts.net

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

Our First Skype Conference Call.

During June of 2006 the Myasthenia Gravis Coalition of Canada (MGCC) was created by Iris Biteen of Montreal.

Executive Committee

Iris Biteen – President

Brenda Kelsey, Vancouver

Judy Bonny, Vancouver

Verna Kapkey, Winnipeg

Jacinthe Rivest, Montreal

Deborah Great, BC

Ronica Sharpe, Ontario

January 17, 2007 we had our first, computer to computer conference call. The connection was excellent and the discussion of the agenda was very interesting and the direct contact across Canada was amazing.

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 worsen the symptoms of MG,

If you have not received this card contact Verna at 1-204-586-6784

Directors

Myasthenia Gravis Manitoba Inc. Chapter Directors:

Gary Parker,Verna Kapkey, Roger Ross

 


Joke of the Day

A Police officer in a small town stopped a motorist who was speeding down Main Street.

“But officer, the man said, “I can explain.”

“Just be quite!! Snapped the officer, “or I’m going to let you cool off in jail until the chief gets back.”

But officer, I just wanted to say…..”

And the officer said’ “Keep Quiet! You’re going to jail.”

A few hours later, the officer checked up on his prisoner and said, “Lucky for you that the chief’s at his daughter’s wedding. He’ll be in a good mood when he gets back.”

Don’t count on it, said the man in the cell…….

“I’m the groom!”