Sunday, September 28, 2014

THANK YOU FOR BEING MY FRIEND

Life is a journey as we all know it and every day comes with its blessings and challenges. How you embrace it is what matters. We are all created in a unique way and not even identical twins have the same character in terms of behaviour.

Ever since I was diagnosed with limb girdle muscular dystrophy the more I turned down requests to go out with friends the shorter my list of friends became, one after the other they dropped me. It wasn't easy at first seeing the people you called friends stopping to communicate with you. My concerns were genuine though because I always insisted on going to social places that were disability friendly for me but such places were none existent at the time.

I could see my siblings going out and me being left behind, it was a lonely and depressing moment then but I do thank my family because to date they have been my greatest allies and I love them so much. As LGMD took its toll on me boarding public vehicles became another nightmare for me since in Kenya there is no single bus that is disability friendly and this made my movement to be more limited so after college getting a job was also tough. I lost contact with all my friends.

A few months ago I decided to take a taxi to the local mall, the trip was just okay for I did my shopping and went back home. My predicament came after alighting the taxi, the driver without looking at his rear mirror reversed knocking me down with the car luckily I got a few bruises. It was not the first time I used his services and I couldn't understand why he didn't let me get inside my compound before reversing. Since then I rely on family members, I plan my trips carefully and inform them in advance that I will need their services. MD is different from other disabilities because your muscles weaken and waste away so with just a light push you can go falling like a log. I always tell people to keep their distance.

In the year 2002, the urge of knowing more about my condition was my top most priority because when I was diagnosed back in 1996 my parents and I had no idea of what muscular dystrophy was and just like everyone else had been told that muscular dystrophy had no cure,the same thing my parents were told. The more I learned about MD the more friends I made, though in Kenya the first person I ever met with MD was fifteen years after my diagnosis.

To date all I can say to my new friends is thank you for being my friend, when I thought I would never make new friends, God had other plans because in the MD community more people keep requesting friendship. More disability awareness is needed so that able bodied people can know how to talk and approach persons abled differently. It is discriminatory to greet everyone and fail to say hello to someone in a wheelchair, this has happened to me several times but I hold no grudges.


MDA has touched many lives and am happy to say I am one of its beneficiaries because the information I got from their website is priceless, and I have been using it to create awareness about muscular dystrophy in Kenya.

Tuesday, August 19, 2014

My Beckers Story: Eva's journey with Limb-Girdle Muscular Dystrophy

My Beckers Story: Eva's journey with Limb-Girdle Muscular Dystrophy: When it comes to sharing my story it has allowed me to connect with others who have also been affected by Muscular Dystrophy. This includes...

Sunday, March 23, 2014

Dreams

Dreams

Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.
Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.


Langston Hughes

Tuesday, March 4, 2014

PUBLIC TRANSPORT

If wishes were horses...
Looking back, the last time I boarded a PSV the driver of the bus ignored my sister's plea and almost crushed me with the bus and to be honest I have never boarded a bus again and that is like 16 years ago.

Nothing has changed with the transport industry in Kenya, most drivers and their conductors are still rude to people with disabilities especially if you have a wheelchair they will keep on ignoring you.

The buses are very high and for someone with muscular dystrophy it gets harder to board the buses because as ones muscles degenerate climbing things becomes difficult.
Since I vowed never to use their services I was left with two options only, one was to use my personal car or two to use a taxi. I have been doing that for sixteen years. On Saturday 1st March we called a cab because my hubby and I had errands we were to do together. We have used this particular cab many times and even the driver now knows my condition but this day was different the driver was unusually in a hurry, so after I alighted he decided to reverse recklessly while talking on his phone and pushed me with the car and due to muscles weakness I couldn't react fast, I fell hitting my knees and chin on the ground.

I thought I was gonna loose my legs but thank God today my knees have healed and I can walk with ease. Cab and psv drivers should be more considerate, they should not hike fares when they see people with wheelchairs, crutches, canes and other assistive devices and by the way since we pay for the services, a little respect is what we ask. 

Luke 6:31 "Do to others as you would have them do to you".

Friday, February 28, 2014

RARE DAY














Limb girdle muscular dystrophy encompasses a group of rare disorders and that makes it a rare disease. Many people are suffering with rare conditions/diseases.

A rare disease is also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear.

I have to salute all who made this day happen for the first time in Kenya, the public is becoming more aware of rare diseases especially those that are not visible, you can't see them with your naked eyes.

http://www.rarediseaseday.org/stories/113

Friday, February 14, 2014

WILL YOU BE MY VALENTINE


 Today being February the 14th, I have one thing only to say. God has been so faithful to me, unlike many people who today are yearning for love either from family members or a partner, He has blessed me with both. I am not afraid to say again He is faithful and merciful.

I dedicate this blessed day to all living with disabilities and rare diseases, I dedicate this day to all the sickle cell warriors especially my husband who through difficult and low moments in his life he has never failed to say the word I LOVE YOU. Oh! I said earlier I have only one thing to write but hey, when you have joy in your heart you want the whole world to share the joy with you.


HAPPY VALENTINES MY LOVE.


 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres. 8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away.

Wednesday, February 12, 2014

DISABLED A POEM BY Wilfred Owen



Disabled
He sat in a wheeled chair, waiting for dark,
And shivered in his ghastly suit of grey,
Legless, sewn short at elbow. Through the park
Voices of boys rang saddening like a hymn,
Voices of play and pleasure after day,
Till gathering sleep had mothered them from him.

About this time Town used to swing so gay
When glow-lamps budded in the light-blue trees
And girls glanced lovelier as the air grew dim,
— In the old times, before he threw away his knees.
Now he will never feel again how slim
Girls' waists are, or how warm their subtle hands,
 
All of them touch him like some queer disease.
There was an artist silly for his face,
For it was younger than his youth, last year.
Now he is old; his back will never brace;
He's lost his colour very far from here,
Poured it down shell-holes till the veins ran dry,
And half his lifetime lapsed in the hot race,
And leap of purple spurted from his thigh.
One time he liked a bloodsmear down his leg,
After the matches carried shoulder-high.
It was after football, when he'd drunk a peg,
He thought he'd better join. He wonders why . . .
Someone had said he'd look a god in kilts.

That's why; and maybe, too, to please his Meg,
Aye, that was it, to please the giddy jilts,
He asked to join. He didn't have to beg;
Smiling they wrote his lie; aged nineteen years.
Germans he scarcely thought of; and no fears
Of Fear came yet. He thought of jewelled hilts
For daggers in plaid socks; of smart salutes;
And care of arms; and leave; and pay arrears;
Esprit de corps; and hints for young recruits.
And soon, he was drafted out with drums and cheers.

Some cheered him home, but not as crowds cheer Goal.
Only a solemn man who brought him fruits
Thanked him; and then inquired about his soul.
Now, he will spend a few sick years in Institutes,
And do what things the rules consider wise,
And take whatever pity they may dole.
To-night he noticed how the women's eyes
Passed from him to the strong men that were whole.
How cold and late it is! Why don't they come
And put him into bed? Why don't they come?
   Wilfred Owen
 
Wilfred Edward Salter Owen MC (1893 to 1918) was an English poet and soldier. He was born in Oswestry, Shropshire in England. He was one of the leading poets of the First World War. His shocking, realistic war poetry makes him stand apart. Owen's poem 'Disabled' explores the effects of war on those who live through it. It is about a veteran soldier who lost his limbs in a battle and after that how his life completely changed, his hopes vanished and his accomplishments rendered useless. This poem was written when Owen was in Craiglockhart War Hospital being treated for shell shock.

Monday, February 10, 2014

HIRING A CAREGIVER

For all who are now familiar with muscular dystrophy, we know that due to a defective gene the muscles degenerate progressively depending on each individual affected. A friend of mine asked these question just the other day; When is the right time to hire a caregiver?

In Kenya very few colleges offer care giving courses and when it comes to hiring one you have to go back to your rural home, talk to some relatives to look for and get one for you. It is never an easy process. I had no problem doing my own things and due to weakening muscles I've been forced to swallow my pride and give in to the fact that my husband cannot assist me in everything even if he wanted to, I have to let him be my companion first.

Every time I change a care giver I have to give a brief description of  the kind of person I am looking for and physical strength is always on top of the list. Here we do not have the disability lifts which aide in standing up that is why physical strength of the care giver is a must. Another thing I always ask is the height of the care giver because I am a tall lady and when it comes to standing up a short person will use a lot of energy to lift me and it is always a struggle.

The only problem with hiring a non professional is that you have to teach them everything about your condition and some don't get it and after a few weeks they resign leaving you with so much stress of how you are going to face the following day. What I normally do now a days before I fully hire a carer, I give them a one week probation and if one passes the test I hire them. I hate being disappointed so I have to take every precaution necessary.

  Hiring a care giver is a personal choice and each and every one of us know exactly when and where the shoe pinches the most. I decided on hiring my first care giver four years ago, I am forever grateful for all the carers who have helped me and shared my journey of LIFE WITH MUSCULAR DYSTROPHY.


Acts 20:35 In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: 'It is more blessed to give than to receive.' "

Wednesday, February 5, 2014

OH NO!

Ever since I was nine years old I have been having this one type of headache that won't let me be. It can occur anytime of day or wake me up at night. At first I used to think my eyes were causing it because I am short sighted but nooo! this type of headache is called a migraine.

 According to the Mayo clinics definition of a migraine it is a headache that can cause intense throbbing or a pulsing sensation in one area of the head and is commonly accompanied by nausea, vomiting, and extreme sensitivity to light and sound.
Migraine attacks can cause significant pain for hours to days and be so severe that all you can think about is finding a dark, quiet place to lie down.
Some migraines are preceded or accompanied by sensory warning symptoms (aura), such as flashes of light, blind spots, or tingling in your arm or leg.

Before the headache comes I normally get these flashes and a vision of something like a zigzag line rotating in my eyes, it can be on the left or on the right after that everything that had a good scent fades and then nausea follows. It is a very bad feeling, years back the migraine was so severe that when it came I had to switch off all the lights go to a dark quite room, carry a basin with water and place it near the bed just in case I needed to vomit. If I was in school, I could either be given permission to go home or rest a while at the school's sick bay.

Yesterday I had one but it was not as bad as it used to be and I thank God for thus far he has brought me, and for His healing touch. I no longer use OH NO! a migraine is coming and throw curse words all over the room, I just take a moment and rest for some hours and it works for me.  


Romans 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Monday, February 3, 2014

A SPECIAL DAY IT IS.

I feel extremely happy and blessed today, everything so far seems to be working in my favour. It is the third day of February...It is my birthday today, and even as I celebrate my birthday creating awareness about the muscle wasting condition lingers at the back of my head.

It has been 18 years since my diagnosis, I have seen my muscle waste away, things I loved to do are now getting harder and harder but that's not the end, right! I have a new passion although my mobility is limited, I have decided that through the internet I will let every one know about MD and the research that has been taking place world wide.

The symptoms of LGMD can easily be seen because most of them are physical and here is a look at some of them:

The first sign is pelvic muscle weakness (difficulty standing from a sitting position without using the arms, difficulty climbing stairs). The weakness starts in childhood to young adulthood. When I started experiencing these symptoms at first we i.e my family members and I thought it was a weight issue, that I was becoming overweight so we ignored the difficulty standing up part. I had problem with steps, climbing steps/stairs became a nightmare in fact just the other day I was reliving the past and I remembered there was a particular time when I could climb stairs on reverse because I found it was easier to climb stairs that way.
Other symptoms include:
  • Abnormal, sometimes waddling, walk
  • Joints that are fixed in a contracted position (late in the disease)
     
  • Large and muscular-looking calves (pseudohypertrophy), which are not actually strong. (mazgwembe that is what we call them here in Kenya) Having enlarged calves invited bullying and name calling in primary school for me, that's a story for another day.

  • Loss of muscle mass, thinning of certain body parts
  • Low back pain
     
  • Palpitations or passing-out spells-This is another sign that I have been experiencing lately and it scares me because passing-out spells occur even when I am sitted. I told my sister once and she just laughed in fact she thinks I am paranoid. Anyway I don't blame her  because she doesn't know much about MD.

  • Shoulder weakness
  • Weakness of the muscles in the face (later in the disease)
  • Weakness in the muscles of the lower legs, feet, lower arms, and hands (later in the disease) 
     
    Apart from all the negative things MD has brought in my life, there is always the good part in every story, my family members are always a stone throw away to come to my rescue whenever I need help and my relationship with my savior Jesus Christ is growing stronger and that's the better part. I celebrate my 32nd year on earth and still praying that a cure is found in this life time so that we that have the muscle wasting gene cannot pass it on to our children.
     
     Psalm 27:4
    One thing I ask from the LORD, this only do I seek: that I may dwell in the house of the LORD all the days of my life, to gaze on the beauty of the LORD and to seek him in his temple.
    Happy Birthday to me.

Saturday, January 25, 2014

AN INSPIRATIONAL STORY

It is never a good thing when a member of the family has a disability, no one SHOULD ever wish for someone to be born with any form of disability. Every member of a family with a child born with a disability or adult who through an accident or inherits a defected gene should never feel depressed, lonely or rejected because of his/her disability.
Someone told me about this story of a young man who rejected his mom because she had one eye and I thank God I found it on my feed yesterday and would love to share it.


 Read on and share the story with friends and family....









" My mom only had one eye. I hated her… She was such an embarrassment. She cooked for students and teachers to support the family. There was this one day during elementary school where my mom came to say hello to me. I was so embarrassed. How could she do this to me? I ignored her, threw her a hateful look and ran out. The next day at school one of my classmates said, ‘EEEE, your mom only has one eye!’ I wanted to bury myself. I also wanted my mom to just disappear. I confronted her that day and said, "If you’re only gonna make me a laughing stock, why don't you just die?" My mom did not respond… I didn’t even stop to think for a second about what I had said, because I was full of anger. I was oblivious to her feelings. I wanted out of that house, and have nothing to do with her. So I studied real hard, got a chance to go abroad to study. Then, I got married. I bought a house of my own. I had kids of my own. I was happy with my life, my kids and the comforts. Then one day, my Mother came to visit me. She hadn’t seen me in years and she didn’t even meet her grandchildren. When she stood by the door, my children laughed at her, and I yelled at her for coming over uninvited. I screamed at her, "How dare you come to my house and scare my children! GET OUT OF HERE! NOW!!!" And to this, my mother quietly answered, "Oh, I’m so sorry. I may have gotten the wrong address," and she disappeared out of sight. One day, a letter regarding a school reunion came to my house. So I lied to my wife that I was going on a business trip. After the reunion, I went to the old shack just out of curiosity. My neighbors said that she died. I did not shed a single tear. They handed me a letter that she had wanted me to have. "My dearest son, I think of you all the time. I’m sorry that I came to your house and scared your children. I was so glad when I heard you were coming for the reunion. But I may not be able to even get out of bed to see you. I’m sorry that I was a constant embarrassment to you when you were growing up. You see……..when you were very little, you got into an accident, and lost your eye. As a mother, I couldn’t stand watching you having to grow up with one eye. So I gave you mine. I was so proud of my son who was seeing a whole new world for me, in my place, with that eye. With all my love to you, Your mother." the son got into tears, but it was too late". 
MORAL LESSON: We should never be judgemental before you start throwing insults at someone because he/she is different from you stop and ask your self WHAT IF? For love this lady gave up an eye, what are you willing to give up? This story always touches the core of my heart.


Thursday, January 23, 2014

MY RIGHT HAND

THE CHANGES THAT HAPPEN EVERY DAY...

It is the first month of the new year 2014, everything this year seems to be changing real fast. I must say the weather has been good, very sunny am even thinking of going for a swim. Then I suddenly remember my fears...back in the day we used to go for swimming every weekend but the problem I had was fear, I used to fear drowning even in the shallow end, so what I used to do was sit at the end of the pool and watch people swim and enjoy themselves.

 My muscles had already started to weaken and though I was not aware of it, I always thought I was getting heavier because by age thirteen I had issues with my weight. Things really do change fast, from sitting at the end of the pool, I was now sitting on the bench watching from a distance.

We are in 2014 today and a lot has happened, my muscles are getting weaker by the day, everyday I realize what I could do a few days ago is becoming difficult to do. I try to keep my hands busy so that my shoulder muscles do not waste faster. My left hand has been of great help. I am right handed and that means I use my right hand to do practically everything.Due to muscle weakness I am unable to lift my right hand to the level I want it to reach especially while eating so I have to use my left hand to support my right making it easier for me to eat, cook and dress.

I thank God for the physical strength that I enjoy today because His grace has been sufficient for me.

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