Myasthenia Express

Myasthenia Gravis Manitoba Inc.

December 2005 - Vol.1 No.20

 

Myasthenia Gravis Manitoba Inc. Chapter

Directors

Gary Parker

Verna Kapkey

Roger Ross

President

Diane S. Kowaliuk

Vice President

Ken chubaty

Secretary

Gary Parker

Treasurer

Maureen Silk

Telephone Committee

George Sinclair

Mary Ross

Sheila Besth

Social Committee

Gord Mackie

Fund Raising

Verna Kapkey

Sandra Penner

Hospital Visiting

George Sinclair

Newsletter Editor

Verna Kapkey

1-204-586-6784

Assistant Editor

Connie Chubaty

Membership

Doreen Amadatsu

Video Production

Gary Parker

Coffee Committee

Connie & Ken Chubaty

 

Presidents Report by Diane S. Kowaliuk

December 2005

    Once again another year has gone by and I would like to thank the executive and the members for all their hard work and such a successful year. We have some very exciting news to share with our members. Due to the grant from Wpg. Foundation this has enabled us to place our phone number in the phone book under the White pages as, Myasthenia Gravis Inc. 582-5456. As well as the same number in the Yellow Pages under Charitable Organizations. We were also able to purchase a computer with email access to communicate more effectively. The email address is mginc@mts.net

With the help of Ron Schmitz and our executive we have a website up and running with a wealth of information. The address is: www.mginc.ca Sincere thanks to Ron Schmitz for his hard work and guidance with this website

With the help of Kyle MacNair from PRISM (Prescription Information Service of Manitoba) and Dr. Gomori, a drug card was created stipulating which drugs must be used with caution for all Myasthenia Gravis patient. You can obtain a copy of the drug alert card off our website listed above.

I would like to thank all the members who participated in our very successful bake sale at Polo Park in September.

I am very proud to be part of this team and be able to work with such wonderful people.

Merry Christmas and Happy New Year

 

Twenty Dollar Miracle

A well known speaker started off his seminar by holding up a $20.00 bill in a room of 200 participants who had come to hear his speech. His first question was, who would like this $20.00 bill? Many hands were raised. He said, I am going to give this $20.00 to one of you today, but first let me do this. He proceeded to crumple up the $20.00 bill into a ball. He then asked who still wanted this $20.00 dollar bill?

Many more hands were raised up in the air. He then replied What if I do this?

He then dropped it on the ground and started to grind it into the dirt on the floor with his shoe. He picked up the $20.00 bill, which is crumpled and dirty. Now which of you still want this crumpled and dirty $20.00 bill? Even more hands went up. Then the speaker said to his room full of his audience. We have learned a valuable lesson today. No matter what I did to the money, you still wanted it, because it did not decrease in value. In spite of being crumpled and dirty it is still worth $20.00

Now let’s compare our lives to that $20.00 bill. Many times in our lives, we are dropped, crumpled, and ground into the dirt by decisions we make or the circumstances that come our way. We feel as though we are worthless. But no matter what has happened or what will happen, we will never lose our value. Dirty or clean, crumpled or finely creased, we are still priceless to those that love us, so dearly. The worth of our lives comes not on what we do or whom we know, but by who we are. You are special, and don’t ever forget it. A lesson to be learned from the crumpled $20.00 bill, is, count your blessings and not your problems.

Author Unknown


 

Our next chapter meeting will be held January 19, 2006

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  AG001 & 2
 


 

Please Note:

That any medical views expressed in this newsletter are those of the individual author and do not reflect any official position or the Myasthenia Gravis Manitoba Inc. Chapter.

 

Theresa’s Story

Our mentally challenged sister, Theresa, was diagnosed with Myasthenia Gravis on June 29, 2005. She was started on Mestinon at that time. She was discharged from the hospital July 6th and by August 5th Theresa could not hold her head up. Her upper body and legs were extremely weak. We called the neurologist and he said he would meet us in emergency. We were there at 5 p.m. and by the time the doctor came to examine her it was 8.30 p.m. By then Theresa started choking on very thick flem, and was not able to lay flat. She started having difficulty breathing. The medical staff tried inserting a tube through her nose to the lungs. Theresa could not tolerate this. She went into Grande mal seizure. Code Blue was called.

Theresa was stabilized and ventilated and by midnight she was transferred to MPICU. Finally by 2.30 am. we were allowed to be with her. This was a nightmare for us.

Today is November 19, 2005 and Theresa is still in the hospital. She has had pneumonia, and both her lungs have collapsed. In total she has had twelve plasmapheresis treatments done. Theresa was taken off the ventilator twice, but had to be ventilated again, upsetting her even more.

Finally the doctors decided to perform the tracheotomy, and at the same time inserted a peg into her tummy as a feeding tube. It took three months for Theresa to come of the ventilator. On October 10th the track was capped. It was so nice to hear her finally talk again. November 18, the track has now been removed. Theresa seems to be doing extremely well, she still has the feeding tube, but is happy the trach is out.

For Theresa, the most frustrating part was she could not tell us her thoughts, because she is unable to write. Her only means of communication was by her own sign language. An example would be, her pointing to her head if she had a headache, etc.

The nurses brought in a TV and a VCR and she began to watch movies, as well as listening to music both day and night.

My sister Susan and I would spend hours talking to her and we prayed day and night, telling her she would get through this ordeal, and how much we loved her. Her tears would flow and this would break our hearts. In the previous four months we have almost lost her a couple of times.

According to the neurologist her Myasthenia Gravis medication is working very well, and her muscle strength is stronger now. We pray that no other complications set in, and we thank God each day for getting her and us this far.

Today she is smiling, laughing and talking, and watching movies. Theresa has been placed in a long- term unit, as she still has a long way to go. She is a fighter with a strong spirit and soul.

Theresa was not expected to live at birth. She has endured seizures all her life, gone into several comas and has been given the last rights. After her late twenty’s the seizures subsided and are not as severe. She is forty- three years old now.

From day one, Theresa has always been full of life. No matter how sick she has been, she always has a smile on her face, for everyone. This is the type of person she really is. She is hopeful and prays to be home for Christmas, as this would be a real miracle for her.

We thank God for the strength he has given us and we thank him for our dear sister, Theresa.

Submitted by sisters

Elsa Johannsen & Susan Bailey

 

Myasthenia Gravis is not a disease that you can control, or explain why you have it. It is how you deal with it that matters. By accepting and learning about the illness, and by meeting others and sharing your experiences, you realize that you are not the only one with Myasthenia Gravis.

 

Immune System

The human body contains a miraculous healing machine called the immune system. Made up of microscopic cells, the system identifies, attacks and destroys disease causing invaders and abnormal or infected cells. The immune system is key to defending you from bacteria, viruses, parasites and more. It also plays a significant role in helping prevent or reduce the effects of various diseases.

A balanced immune system allows you to enjoy vibrant health. To do all this, the immune system needs to be in balance. Always maintain a healthy eating diet.

Internet source.

 

Cherish your health. If it is good, preserve it. If it is unstable, improve it. If it is beyond what you can improve, get help.

 

How to Fight MG Fatigue

This guide aims to help MG patients preserve their strength. The helpfulness of the suggestions will depend, to a large extent, on the severity and individual experience of the condition. The guide is especially directed at those less familiar with the illness, but there are a number of suggestions more experienced MG patients will find helpful.

 

Around the house.

Don’t stand when you can sit.

Plan your activities and assemble everything you need before you start.

Reschedule daily tasks so you do some only three to four times per week so you have enough time to rest each day.

Delegate tasks: ask children or family members to help.

Schedule rest periods each day.

Use a cart, wagon, or basket to carry things from one part of the house to another to eliminate retracing your steps.

>Move things you use often to low, easily accessible shelves.

Use power tools and labour saving electrical appliances. (eg electric can opener).

 

While Shopping

Get a handicapped parking sticker. Your local health services department has the form that your doctor will need to fill out.

Shop when your medication effects are at their peak.

Make a mental note of any seats that are available in the store. These are usually found near the store exits, sit down when you are tired.

Shop by yourself only when you need a few items; let other family members do the major weekly shopping.

If you arrive home tired, unload only the perishables. A family member or friend can unload the rest later.

Shop by mail order whenever possible, or by telephone or on the Internet.

Avoid peak shopping and traffic hours.

If you live alone, be sure your neighbors know that you have Myasthenia Gravis. It may be a good idea to give them your doctor’s name and phone number. Have them check on you daily if you are not doing well.

 

Personal grooming

Sit on a stool in the bathroom while shaving or applying makeup. Prop your elbows on the counter top if your can.

Allow enough time to complete personal grooming in “phases” allowing for frequent rest periods.

Take short showers or baths using warm (not hot) water. Prolonged bathing in warm water worsens muscle fatigue, so you may have difficulty getting out of the bath without assistance. The hotter the water, the more exaggerated your muscle fatigue will be.

 

Taking your medications

If you feel extremely weak in the morning, keep one dose of your medication and some water at your bedside ready to take when you wake up.

Use a watch with an alarm to remind you to take your next dose.

If you have a daily medicine routine, tape you schedule to the prescription bottle. A printed schedule is especially important at times when you are unable to medicate yourself or are unable to tell someone else when your next dose is due.

Perform strenuous activities only at peak drug times.

If you find that you are generally weaker or shorter of breath than usual and have more difficulty swallowing, contact your doctor or neurologist immediately. Your Myasthenia Gravis medication dose may need to be adjusted.

If you have no trouble swallowing, take your medication with food to reduce stomach upset and diarrhea. If you do have trouble swallowing, some medications are available as liquids and others may be crushed and added to small amounts of liquids.

Keep several doses of your medications in your car, at your workplace, and in your wallet or purse, at all times.

Do not take new drugs, especially over the counter remedies, without checking with your doctor or pharmacist.

If you notice severe weakness within 30 to 60 minutes of taking your medication, then you may have overdosed, although over dosage is unlikely, it is wise to call someone immediately to help you get to your doctor, or hospital.

Remember that some drugs may aggravate Myasthenia Gravis. These include heart medication, rheumatoid arthritis and gout medicine as well as muscle relaxants, etc.

Avoid any medications that have ever worsened your Myasthenia Gravis symptoms.

Keep a MG calendar to assist your doctor in establishing a medication routine. Write down your daily dosage of medication and how you feel each day. This is especially helpful in alternate day prednisone therapy.

Observe good health rules. Remember that minor infections, from a cold to an infected tooth, can aggravate your Myasthenia Gravis symptoms. Early treatment by your doctor will avoid any complications.

 

When you have problems with vision

Have your eyes checked in case you need glasses or a new prescription.

If you have double vision, wear an eye patch while

reading or watching TV. Alternate the eye patch from one eye to the other to avoid eye strain and report this symptom to your neurologist.

If you have visual disturbances, rest for 30 minutes with your eyes closed before you go out. Remember to take along an eye patch.

If reading is a problem, your local library may have books available on audiotape.

 

When you have difficulty eating, let your doctor know

Grind meats to make them easier to swallow.

Begin meals with cold beverages, hot foods tend to provoke muscle weakness and swallowing difficulties.

Try semi-solid foods. You may find them easier to handle than either solids or liquids.

Ask a dietician to help you plan your meals.

If you take steroids, avoid salty foods and notify your doctor if you gain weight suddenly or if your vision begins to cloud. Unlike blurred vision, which improves with rest, persistent cloudy vision may be a sign of steroid induced cataract formation.

Keep nutritious snacks handy. Try milk shakes or pudding for snacks.

 

Avoid Irritants that make your symptoms worse

Very hot or cold weather may exaggerate weakness.

Many aerosol pesticides and cleaners contain neuromuscular paralyzing agents and may exacerbate symptoms.

Avoid stressful situations as much as possible. Most important of all, safeguard your health by educating yourself about your illness and medications, wear a medical identification bracelet and carry a personal medical emergency card in your wallet.

Learn to laugh, it takes less energy than feeling sorry for yourself. A smile and a happy thought take less energy than a scowl and self-pity. Positive thinking is better for you than negative thinking and does not have any adverse effect on your Myasthenia Gravis.

Internet American Journal of Nursing

 

Famous People with Myasthenia Gravis

Weeb Ewbank - NFL Hall of Fame & two-time Super Bowl winning Coach

Lamar Lundy - Former NFL Pro Bowl linebacker & member of the Rams, “Fearsome Foursome” defense

Charles Nelson - Brother of Hall of Fame golfer Bryon Nelson

Lawrence Olivier - Famous actor

Aristotle Onassis - Famous husband of Jackie Kennedy

Lucianno Pavarotti - Daughter of famous singer Pavarotti (name unknown)

“Sleepy Dwarf” - One of the seven dwarves-believed to be modeled after a friend of Walt Disney’s that had myasthenia gravis.

Phil Silvers - Actor (played Sgt. Bilko)

Roger Smith - Famous actor and husband of famous actress Ann Margaret.

 

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  888-8628

 

Our next chapter meeting will be held January 19, 2006 at the St. Boniface Hospital in room AG 001 & 2.

Please try to attend the meeting as your presence and impute is beneficial to everyone else.

 

Literature

If you, or someone you know has Myasthenia Gravis and needs information on the illness, we do supply literature, in the form of previous articles, pamphlets, etc. for members and their families. Contact

Verna Kapkey at 586-6784 or vkapkey@mts.net or mginc@mts.net