Thursday, August 20, 2015

PLANNING FOR THE FUTURE

I've come to realize that planning for the future is a top priority especially when you have MD. The condition is progressive and my personal needs keep changing all the time.

When I first started using a manual wheelchair, I was so happy that at least I had regained some independence but as the years keep passing by the need for a powered wheelchair for me will mean greater independence.

This is my manual wheelchair

At Greenspan Mall-Donholm
I've had fun times with the manual wheelchair now its time to switch to a powered chair that won't require me being pushed around.

Sunday, August 16, 2015

HAPPY DAYS

Today I feel like I can fly to the moon and back, I am so happy. I just want to thank my God for  His blessings upon my life. Truly he has been gracious to me. After so many years of  setbacks after setbacks, He was only preparing me for something greater MD notwithstanding.
with friends at a friends wedding
These beautiful ladies are my former High School classmates, from left Sarah, Grace and Annette. I had a great time, seeing them after so many years.
Regina and I
I wonder what Reggie was doing behind the yellow line!!!!! Am glad she was there we were able to take a snap.
From Left: Regina, Faith, Annette, Sarah, Moniq,Grace, Rachael and Aidah
The girls

At the dinner table...I enjoyed every bite
Meal time

Cheers to you...

I was able to attend this event because the venue was accessible and everything was disability friendly. I am looking forward to more adventures and fun moments.

Saturday, January 31, 2015

GOING OUT 2



It is always a joy going out and on this particular day I had the opportunity to see off my big sister Emma as she was travelling to America.

I had mixed feelings especially having to adjust with her not being around, my sister has always been there for me especially whenever I have an emergency she never hesitates to assist.


We were at the Jomo Kenyatta International Airport and loved the  way the airport is disability friendly.

I love my family for they have stood by me as I continue my journey with limb girdle muscular dystrophy.

It is not easy to put the wheelchair leg rests back on and for first timers it can be pretty challenging. My husband was nowhere in sight for he was in another car and he is the only one who knows how to put them back on so I had to lift my legs up as we moved to Terminal B for international departures.

He finally showed up and put the leg rests back on, it was an emotional farewell but happy to say that my sister arrived safely and is quietly settling in...

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

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