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GLENDALEE

MDA.ORG MDA HAWAII

Hello, my name is Glendalee Laureta and I have a rare disease from genes passed down to me genetically. Unfortunately, it is unknown whether it is from my father or mother, possibly both. This disease is caused by a genetic mutation of hereditary genetics and usually develops after inheriting a faulty gene from one or both parents.

I’ve been suffering this mentally, physically and emotionally since 2001. During this year, I have gone through multiple tests with neurologists along the way. These tests were done Kauai to my present home, Oahu.

I was born in 1977 on the west side hospital of Waimea, Kauai. Then, grew up in the city area in a town called Hanama’ulu. I had many talents; due to many hours of practice and other things my parents would put me in. This consists of singing and hula dancing classes. Although, I’ve done many things, i have always favored singing, as music gives me peace in life, indoors and outdoors. I find serenity out there wherever I’m out and about, just cruising. I have a spot somewhere where I’m just playing music in my head and vocals on many occasions.

I’ve really enjoyed the entertainment part of my days, as a normal human being, that is just like you and me. Then, in 1999, I realized a bit of pain, like locking of my knees and sometimes my ankles. I thought nothing of it and never took it seriously. I thought it was just from standing at work all day, as some shifts were 12 hours.

Then, little after that we were blessed. It began having a baby boy to focus on, a wonderful husband whose got a new baby, and wife with a new unknown disease.

Being it is a rare disease; we had no clue what this disease is about. I had to read and get information that really wasn’t much from doctors, to surgeons, to counselors, and physical therapists. It started to feel like doctors’ offices and hospitals were my second home. It was nerve racking inside. Outside, I’d flaunt my happy, no problem look with my smile. Till this day, I have those days, but I know everyone says we are not alone.

In this walk with MD, I had to do many things on my own. My attitude of life has changed. Many things that were goals became unreachable. I ended up being placed on disability due to health restrictions and Hawaii’s favorite, a liability to any jobs. So, my doctor put me on a disability program that became permanent due to my diagnosis.

So, in 2003 I was once again blessed. Though, I was also got taken off jobs for safety and liability reasons. I had to give up what I loved to do. I loved what I did, as it let me meet many people from all around the world. I’ve also met famous people with the job I once had. Although, I looked at it as a gain, based on my son and soon to be a daughter.

As I keep up with my doctor’s appointments, therapy is scarce here in Hawaii. We don’t have as much as the continental US has. As a matter of fact, because of the distance from here to there, we are the last to receive anything that could help us right away. It’s always a whole book full of paperwork of approvals, until it passes to the mainland. Then, we continue on until we get the needed item or help. Therefore, we try our best to keep it together.

Others would see a person whom is strong and full of greatness inside. Unfortunately, inside they are crying out loud and doing their best to lock it in from getting out. All this emotional disturbances is hard. It’s even harder when reality or personal problems arises. I took on a lot and never realized my disease playing a part of why things were coming out differently than a normal day for one with no problems. At times, I’d forget it, and just build my strength around being useful among the community. I drowned myself to volunteering and became a helper in all ways i could in my kid’s elementary schools. I’ve done that for 10 plus years. I’ve joined many other programs such as Accessurf Hawaii and enjoyed bringing out my talent at different occasions. Began to learn more of my disease from specialists and internet.

Fast forwarding to leaving to get some clear and non-blockage of everyday relationships and problems. I gave it up to seek peace and given myself time to explore and make life guided on whatever it is to make life worth living. So many times, have I wished upon death alone. Many times, I’ve wanted to throw in the towel from continuing the fight for tomorrow.

It worsens when those close around me would show me no interest. Taking my will power to my very end. This showed me all negative attitude towards my actions and not realizing the reason ‘why’? Being weak physically made it harder to do many things. Not even taking account of my everyday pain and shocks throughout the body that I face naturally.

I’m one to push myself to satisfy those around me. I’ll help as much as I can. I respect all around me and befriend anyone who’s in need or in need of comforting or help. I am a person who would try to do something before I say no. I put them before myself and began to deteriorate more and not notice my own self being affected. Stress played my cards and I became a little more on the depressed side. I’ve labeled myself as a bitter non-useful person. I believed the ones supported me that were close to me whenever they turn their back on me.

What hits me hard, is how I had to realize that i had to walk alone. I had to give up that sort of surroundings. I played it on my own. Making decisions hoping it would work and if not fixable. I’ve been on this depressed ride a long time. I’m still on it, but maybe not as bad. Being able to get away from these islands helped me gain individuality. That I’m able to do it alone. Not to worry if anyone is with me or not. To do what your heart is strongly guiding you through using life past and mistakes already done as my notes.

I’m unsure of the future with LGMD, but I do want to help others with muscular dystrophy. I’ve began to join other programs out online and hoping that one day Hawaii will have an MDA program back for us in the Hawaiian islands. We don’t have any here like a MDA office that can help us find help on the islands. We have no support groups, no personal one-on-one muscular dystrophy counselors. They play a big part in our journey. It’s not available due to doctors here, which leaves us fending as an individual alone.

It’s up to us to be strong, one the inside and outside of ourselves. We must do it if we want to have a life reasonable to reality. Living with muscular dystrophy, I’ve learned the following:

1. Accept what the diagnosis is. Keep an open mind, although, hard to do.
2. Continue to push doctors and counselors in keeping all therapy whether its home or at the office.
3. Continue to find serenity in your day. For me it’s in the morning time when the world is yet quiet and peaceful.
4. Always try your best never go over your limit on anything. To be open not closed to anything comes before you.
5. Sit and think of the choices or decisions about to be taken. Weigh out the pros and cons. Be true with yourself the most.
6. Only you can make decisions and choices that will help play into life. Bring out positive. If you feel your being bashed by anyone with words get out as soon as you can, walk away. Of course, not forever, just until things calm down and the positivity comes back into the relationship with whomever it is. We have to live with a lifetime challenge being told negative being unsupported will guide us a different way and most paths are very negative. So, step away and gain positive while taking that time out.
7. Work on a plan or do what you should do then not do. Depressed? To me is over used. Be that one out of 10 that makes it not break it.

I’m still searching for better ways to deal with my LGMD, I never will stop. Only because no-one ever knows what can become. I took a little bit of advice from someone dear to me, he said, “don’t drown in fighting for my cause. That will make me feel like a failure.” So, I took it as, do things slowly and ride it through.

Focus on what good you already have and use that in the best way we can. As clients living with muscular dystrophy, stick to what is working for you. Doesn’t mean give up learning new things. My advice is to continue to search in good will. Keep positive within yourself and own knowledge. We are individuals whom not many knows how to deal with.

Being it is a rare disease, we only have ourselves our faith in believing in ourself. We have our own path alone, but a lot of us have supporters out there online or personally. It takes one kind of person to get through all of this. It’s yourself alone. Help is out there, don’t shy away from it and go for it as best as you can. Do not give up and let the evil in. Like I always say, “when one door closes another one opens.” As for me, I love poetry and I live these 3 words on a daily, well, I try to. It’s LIVE, LAUGH, and LOVE. My daily word I grasp around everything is HOPE.

My life isn’t easy like everyone thinks it is. Like I mentioned, its hidden behind a smile. Why? Because to me, it’s a path that was given to me from birth. The reason it’s a genetic given disease. Whether it has or won’t have a cure, I will never let it run the life my parents blessed me with. I will make it the best I can. Whether I run into mistakes and learn or not. It’s all inside of ourself. We choose our decisions to play out, whether it’s wrong or right. No one has the answers, but us. We are our own leader our own growth and success lies in our own hands.

Remember, no one can make us feel better it comes with ourself and what we chosen to live by. We make our own destiny, regardless if it’s with someone or by ourselves. We answer to only one person, which is yourself. So, ask yourself, “why don’t I find the strength in ourself and believe in every positive that comes to us?”

Cherish what is and what will be, but never forget where we came to be. We may not have tomorrow. So, do the best you can today. The past can never be relived. So, learn from it or cherish the gains you’ve done. Today is a gift, that’s why we call it the present.