Asher

LGMD “ Spotlight Interview”

Name:  Asher  Age:  10 yrs. old

Country:  New Zealand

LGMD Sub-Type: Unknown

*** (Asher’s mum Chloe assisted with the interview ***

 

At what age were you diagnosed:

Asher was diagnosed when he was 5 years old.

What were your first symptoms:

He was slow to crawl, stand and walk. I noticed he struggled in comparison to his peers to use the playground equipment and run races as a preschooler and when he first started at school.

Do you have other family members who have LGMD:

Asher is the first person, we assume he has a recessive form of LGMD.

What do you find to be the greatest challenges in living with LGMD:

Asher says “My greatest challenge is that I can’t keep up with my friends and I get very tired. “

Asher’s Mum says “the hardest thing for me is the uncertainty of the future and worrying that I am not making the right decisions for his health and well-being. I wish we had a complete diagnosis including subtype so I had a bit more understanding of what to expect going forward”

What is your greatest accomplishment:

Asher says “Hmmm, I’m not sure. That’s deep. I have done a lot of things. I guess my greatest accomplishment is when I won an award at the National Junior Disability Games for most promising Waka Ama Athlete. That was really good”

 

How has LGMD influenced you into becoming the person you are today:

Asher says: “Well, I have a really cool power chair and that makes me pretty cool. My seat is more comfortable than most people’s seats are – so that is pretty cool. Plus I get to do really fun stuff like disability games and adapted sport. So yeah Muscular Dystrophy is good like that”

Asher’s Mum says: “having a child with a disability has changed a lot about our lives and what we had expected. It’s made me more understanding and empathetic of other parents’ challenges. I know what it feels like to be overwhelmed. I have signed up to be a support parent for others through an organization called parent to parent and I feel really good about that.  I like the idea that we are stronger together.”

 

What do you want the world to know about LGMD:

Asher says “I want the world to know that it is hard and people who have it feel really tired.”

Asher’s Mum says “I’d like people to know that it is progressive so what people can do today they may not be able to do in the future. I think it changes the way we live our lives because we try to make the most out of every day and every experience.”

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

Asher says “I would run the cross country at school and not come last.”

Asher’s Mum says “the first thing we would do as a family is go to a theme park and do every ride. Then we would have a bubble dance party til late and not worry about anyone being too tired”

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at http://lgmd-info.org/spotlight-interviews




Karin

LGMD SPOTLIGHT INTERVIEW

NAME:  Karin    AGE: 53
COUNTRY: United States
LGMD Sub Type: Unknown

AT WHAT AGE WERE YOU DIAGNOSED?

I had been having problems years before my diagnosis. It wasn’t until I hit 40 that my life began to change. Then at 53 years of age I got the diagnosis of having Muscular Dystrophy.

WHAT WERE YOUR FIRST SYMPTOMS?

First noticed I was fatigued way more than normal. Getting out of bed, turning myself over in bed, became a big chore. Weakness in my hips and legs, to where I began falling a lot. I had a lot of trouble getting up from a sitting position and climbing stairs. My breathing was like I finished sprints while carrying in a conversation! Those were the first noticeable symptoms. Every day it seems something new pops up.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD?

One of my biological brothers in Germany had been presenting similar signs and symptoms of LGMD. He passed before a diagnosis of his current medical problem. I was adopted and if I knew what I know today, I would have tried harder to find out more about my families medical history!

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD?

Getting out of bed! Lol
Learning how to maneuver my wheelchair, and reaching for items in the home. Public restrooms are the most challenging. The handicap stall is usually occupied by an individual who is not disabled so it is difficult to hold it in while they are in there doing their hair and nails.  Lol

WHAT IS YOUR GREATEST ACCOMPLISHMENT?

Finally getting a diagnosis! After years of ER visits and seeing doctors, not labeled as a “hypochondriac” anymore. Clearly, when you go from walking, to a cane, then to a walker,  then into a wheelchair, something is definitely going on. I’m thankful my doctors finally saw what was going on.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY?

I am stronger willed. More of a caring personality. My outlook on life has changed for the better. Life is to short and I am not going to waste it by worrying how the MD is going to affect me. I do almost everything I did prior to my diagnosis. Now, it just takes a little more time and effort, but I enjoy everything I set out to do.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD?

We need more research and funding. It may not affect “you” but somewhere along the way, your kids children……. will be affected. It would be nice to have a cure. Please donate!

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO?

I would want to travel, go back to work full time, with lots of overtime!! I used to drive trucks (semi’s), so, getting back in a truck and seeing the countryside and getting paid to do it, would be a dream come true!

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Keisha

LGMD “Spotlight Interview”

Name:  Keisha  Age: 31 yrs. old

Country: United States

LGMD Sub-Type : Unknown

 

At what age were you diagnosed:

I was diagnosed about 5 years ago at the age of 25-26.

What were your first symptoms:

I noticed that I was repeatedly falling and that my leg would give out without any warning.  I also recall that I was unable to raise my right arm unless I had assistance.

Do you have other family members who have LGMD:

So far, no one in my family has muscular dystrophy but I plan to have my parents tested to see if they are carriers.

What do you find to be the greatest challenges in living with LGMD:

One of the greatest challenges is always having to plan ahead – if going out with friends or family to make sure the place is handicapped accessible.  Every day it also takes me longer to get dressed in the morning.

What is your greatest accomplishment:

Coming to the fact that I have LGMD and still trying to figure out which form of LGMD.  And learning to embrace it.

How has LGMD influenced you into becoming the person you are today:

I feel LGMD has made me an unique individual helped me to bring awareness of the disease to others that don’t know much about it.  Having LGMD has helped me to become stronger and more independent.  I know that having LGMD is a part of me, I am human and still have my days just like anyone else.  I am a strong and proud woman with LGMD.

What do you want the world to know about LGMD:

LGMD is something that currently has no cure.  It is something that won’t go away.  Physical therapy and aquatic therapy help manage the disease.  Even with LGMD, we are still strong and can live a normal life just like anyone else.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

If I could be cured tomorrow, I would want to run a marathon, run up and down the stairs, and take a big vacation somewhere to celebrate!

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Nitesh

unknown-niteshLGMD “SPOTLIGHT INTERVIEW”

Name:  Nitesh   Age:   27 years old

Country: India

LGMD Sub-Type:  LGMD (sub-type unknown)

 

At what age were you diagnosed:

I was diagnosed at the age of 10.

What were your first symptoms:

My first symptoms included: calf muscle stiffness and pain and frequent falls along with difficulties in running and jumping.

Do you have other family members who have LGMD:

No, I am the only one in my family with LGMD.

What do you find to be the greatest challenges in living with LGMD:

The greatest challenge in living with LGMD is that you have to plan and depend on others for things which normal people take for granted in their lives. For example, if you are going to restaurant or movie theatre or checking in a hotel  you need to check if the infrastructure is disabled friendly, if you are travelling you need to make sure that the personal care assistant is available, make provisions for your wheelchair battery etc.

What is your greatest accomplishment:

There are so many accomplishments. The fact that I am still working and is leading a happy and a wonderful life is an accomplishment itself. Despite the challenges I have been able to complete my undergraduate degree in Finance and has also completed all level of Chartered Accountancy (CA) and Chartered Financial Analyst (CFA, US)

How has LGMD influenced you into becoming the person you are today:

Living with LGMD is challenging but full of teachings and experience. It is a progressive disease and in the entire journey you face several challenges of different magnitude. It had made me stronger and less worrisome. Most importantly it imparted training unconsciously to become more used to changing environment which has helped me personally adjust in various spheres. I have come a long way from being able to play cricket to a situation where now even standing is little difficult. All such experiences have taught me to stay contended and happy with whatever I am left with.

What do you want the world to know about LGMD:

According to me LGMD is not a disease but a way of life. There are numerous forms of physical disabilities where you see a lot of inspiring people are able to develop a skill such as painting with one hand or leg, finding their own unique way to lead normal life, but what’s most unique about LGMD is that it constantly changes the situation and the moment you find yourself in a comfort zone, it throws some another challenge and leaves you at a starting point again. So it’s important to treat each individual with LGMD differently and that all the solutions needs to be tailor made.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would like to go on an adventure spree, do all sort of activities such as mountaineering, paragliding, driving car or as simple as taking a long walk.

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Steven

LGMD Spotlight interview:   

Name:  Steven  Age:  57 yrs. oldUnknown -Steven

Country:   United States

LGMD Sub-Type :  LGMD (sub-type unknown)

 

At what age were you diagnosed:

I was diagnosed at the age of 43.

What were your first symptoms:

Vague symptoms have been present since birth.  I had a waddling gait, could not climb, had difficulty with stairs but the doctors could not diagnose the cause.  My mother always knew something was wrong….but what?  I was finally diagnosed with LGMD when heart problems began at the age of 43.

Do you have other family members who have LGMD:

Yes, most likely.  A second cousin (female) and my Grandpa Stone possibly had a form of MD because he was crippled from youth but back then they called it “rheumatism”.  I also had another second cousin (male) who was totally helpless and died young.

What do you find to be the greatest challenges in living with LGMD:

The greatest challenge are falls!  I was in Boy Scouts since the age of 11 and had difficulty keeping up with other boys in activities.  I have experienced numerous falls.  I require the rescue squad and neighbors to help me up as my wife is usually at work when I fall.

What is your greatest accomplishment:

My greatest accomplishments include fathering 4 children – 3 of which are still living.  I was able to hold a job for 25 years and volunteered with the local rescue squad for 38 years; beginning at the age of 16.  I continue to volunteer with the rescue squad but only answer the phone.

I served as a Boy Scout Leader (assistant scout Master for 25 years.)  Currently, I am now an organizational representative.  I was an Eagle Scout in 1978.  For my Eagle project, I did a church cassette tape ministry.  I continue to serve as the sound man at church today,

How has LGMD influenced you into becoming the person you are today:

All of my life – everything that I do is a challenge!  But with work and determination, I have ‘Kept on Keeping on.’   I am determined to stay as active as I can be despite my LGMD.

What do you want the world to know about LGMD:

LGMD makes every accomplishment a real challenge.  But work and the desire to succeed can make many things possible.  My whole life has been hard but it could be worse….especially if I had a different type of muscular dystrophy or I had a more severe form of LGMD.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

If my LGMD could be cured tomorrow, I would want to be recertified as an EMT and then volunteer on active duty with the rescue squad.

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Jonathan

LGMD “SPOTLIGHT INTERVIEW

07/10/2016

Name: Jonathan   Age: 54 yrs. oldUnknown -Jonathan

Country : England

LGMD Sub-Type :  Not known

AT WHAT AGE WERE YOU DIAGNOSED?

Initially when I was 11 (1973), I was diagnosed with Congenital Muscular Myopathy. No further action was taken or attempt made to identify what type of Muscle condition.

Finally, following a mini breakdown in 1988, further tests were done and I was diagnosed with Limb Girdle Dystrophy. Sub Type unknown, and at that time it was not suggested that further investigation would help or be necessary.

As I had always done, I adapted and learned how to deal with it.

WHAT WERE YOUR FIRST SYMPTOMS

When I was a baby, my mother noticed that I could not lift my head up. Whilst I walked at a normal age, she said I found it hard, fell a lot and seemed a lot weaker than other toddlers of a similar age. Later on, trouble walking, falls and other issues flagged up warning signs.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD?

No, although it’s possible a maternal great Aunt had a Muscle condition ….but that is historical.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD?

  • The mental acceptance of being subject to a muscle wasting condition.
  • The frustration of being unable to undertake simple tasks such as getting out of chairs.
  • The exclusion of certain activities.
  • Being unable to control muscle strength.
  • Breathing – two near death experiences –living with a ventilator.
  • Heart – curtailing improving fitness.
  • Becoming exhausted all the time.

WHAT IS YOUR GREATEST ACCOMPLISHMENT?

My children, neither of whom have any indication of muscle weakness. Both are fit and healthy.

Being a nice guy, with many friends and a great family.  I worked for 35 years full time.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY?

I believe LGMD has influenced me, for the worse mainly.

From an early age I was conscious I failed at a lot. Especially at school, but also in the family.

My sister was three years younger than me, but seemed to overtake me very quickly and achieve success in many areas. She’s lovely, my sister, and I didn’t begrudge her, but it was hard to take. I got used to losing. I was sent to Public school which specialised in sport, Cross country runs I would come last by such a distance that I would be told to go round again and I tried Rugby, Football, Squash, Cricket, Hockey, Fives….I never used LGMD to avoid having a go. But I was hopeless and hated it. This inadequacy crept in all areas, I lost all confidence in academic work…. I panicked in exams and failed most of them. True friends were few and far between…and I couldn’t get a girlfriend for anything…they just laughed at my attempts. I am sure this lack of self-confidence was a result of my physical condition impinging of emotional and spiritual feelings. Whilst I still feel this , I have developed ways to overcome most areas of life, and have made it through 54 years.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD?

That it is as much to do with internal emotions, as practical difficulties.

IF YOUR LGMD COULD BECURED TOMORROW WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO?

I’m not sure I’d change much. I love walking and perhaps I’d go back to Cornwall to enjoy the Coastal cliff walks. It would be nice also to do a bit of travelling without the worry of exhaustion, breathing and logistical practicalities.

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  http://lgmd-info.org/spotlight-interviews




Niliwan

LGMD “SPOTLIGHT INTERVIEW” 02/18/2016

Name:    Niluwan         Age:  25 years.Unknown -Niluwan

Country:  Sri Lanka

LGMD Sub-Type:   Unkown

At what age were you DIAGNOSED?

I was diagnosed when I was 13 years old.

What were your first SYMPTOMS?

I experienced difficulty in climbing stairs.

Do you have other family members who have LGMD?

No. I am the only person in my entire family.

What do you find to be the greatest challenges in living with LGMD?

The greatest challenge is climbing stairs. Also travel in public transport.  It is also a challenge to find a suitable job.

What is your greatest ACCOMPLISHMENT?

The greatest accomplishment is completing my studies.

How has LGMD influenced you into becoming the person you are today:

LGMD influenced me to become strong and face challenges in the life.

What do you want the world to know about LGMD:

Everyone in the world must know about LGMD. Many people don’t know what LGMD is. If they know they can provide facilities and help LGMD people.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I will run everywhere.

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  http://lgmd-info.org/spotlight-interviews




Michal

12/10/2015

NAME:  Michal   AGE: 35 yrs. oldUnknown -Michal R

COUNTRY: Poland

LGMD Sub-Type: Unknown

 

At what age were you diagnosed:

I was diagnosed when I was 25 years old.

What were your first symptoms:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

Do you have other family members who have LGMD:

NO , I’m the only person in my family who has this disease.

What do you find to be the greatest challenges in living with LGMD: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

What is your greatest accomplishment:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

How has LGMD influenced you into becoming the person you are today:

I have become more insensitive to pain and I’m not fearful of any challenges

What do you want the world to know about LGMD:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I think if I were cure tomorrow, I would run and do everything I never could do!

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  http://lgmd-info.org/spotlight-interviews




Robert

12/4/2015:

NAME:  Robert   Age: 71 yrs. oldUnknown -Robert P

COUNTRY: Canada

LGMD Sub-Type: Unknown

 

At what age were you diagnosed:

I was diagnosed when I was 42 yrs. old.

What were your first symptoms:

I did not walk until I was 24 months old.  As a child I could not run like others but it was believed at the time to be caused by asthma.  I have never been physically strong.

Do you have other family members who have LGMD:  

Thankfully, no.  I am the only person in my family diagnosed with LGMD.

What do you find to be the greatest challenges in living with LGMD:

One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.

What is your greatest accomplishment:

My greatest accomplishment is  the friendships I have developed.  

How has LGMD influenced you into becoming the person you are today

I believe living with LGMD has taught me patience, organization, empathy for others, and humor.

What do you want the world to know about LGMD

As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical.   Not everyone is as fortunate as I to work a full career and be able to plan for retirement.  Please help to find a treatment or cure.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I want to go for a walk along the roads and in the fields and forest around my home community.    I have not done that in over 50 years ….. and I miss it.  Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  http://lgmd-info.org/spotlight-interviews




Mark

10/02/2015

Name:       Mark          Age:      54Unknown -Mark B

Country:          United States

LGMD Sub-Type (if known):      Unknown

 

At what age were you diagnosed:

Age 41. The day was January 28, 2002

What were your first symptoms:

Difficulty climbing ladders and stairs. Also difficulty rising from the floor or a low chair or sofa. But I was always slow as a child. I could not quite keep up with my friends or schoolmates.

Do you have other family members who have LGMD:

 My father had an unknown sub-type of LGMD. He was the first, and only other, patient in our family. His parents and grandparents seemed to be unaffected. My symptoms parallel his almost exactly. I was his caregiver from the age of 14 to about 25.

What do you find to be the greatest challenges in living with LGMD:

Having to constantly ask for help. Watching my wife and daughters do the chores that I would enjoy doing, and that the man of the house usually does; yard work, repairs, etc. Watching my wife give up outings, restaurants, vacations, and so on. I can live without, but it’s not fair to her. I encourage her to do those things, but she misses going out as a couple as well. We do go out, but it’s not spontaneous and the outings are few and far between.

What is your greatest accomplishment:

Before the MD? The home and family I’ve established. And I’ve many close friends.

In spite of the MD?  I’ve always had a “Bucket List” in my head of life goals. I have seen most of these materialize and come to pass. A few examples: Hire an architect and build our dream home (accessible as well). Read Les Miserables. Learn to solve a Rubik’s Cube. Take a train across the United States. See the Grand Canyon. There are dozens more, none of which were prevented because of my LGMD.

How has LGMD influenced you into becoming the person you are today: 

I am determined to identify my sub-type. I believe a genetic diagnosis will be critical in future treatments. I have created a Facebook group, “Muscular Dystrophy Subtype Unknown”,  for MD patients who have been unable to achieve a genetic diagnosis. The group is far more than venting and support. We share valuable resources and information with the goal that if one gets diagnosed, many others may benefit. This is my mission, my goal and my passion right now; to help as many of my fellow LGMD friends as possible and get myself and every one of them a diagnosis. I won’t give up on them even if I identify my own sub-type tomorrow.

What do you want the world to know about LGMD:

People with LGMD have the same hopes, dreams and fears as you. In our minds we run on the beach, walk barefoot in the grass, hike along a mountain stream. It takes a great strength of heart to not succumb to the imprisonment in our own bodies. Never take your body and legs for granted! Never take for granted getting up from a toilet, running an errand, hugging a loved one or holding a baby. Those abilities are a distant memory for me. But at the same time, our lives are SO MUCH MORE than healthy legs! Enjoy your family, a sunset, a good book, a thunderstorm, a bird in your backyard. Don’t be unhappy because your boss was crabby, you were stuck in traffic or your dinner got cold.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would thank God and the team of doctors and researchers that made it happen. Then I would hug everybody I love….hard and long. Then I would do a few of the things my wife and I love to do; dine out, travel, and walk in the sand holding hands.

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews

 




Rinku

06/15/2015:

Name:  Rinku    Age: 23Unknown - Rinku

Country: INDIA

LGMD Sub-Type:   Unknown

 

At what age were you diagnosed:

I was diagnosed at the age of 8 yrs. old.

What were your first symptoms:

I was falling frequently and had difficulty  with climbing stairs and running.

Do you have other family members who have LGMD:

No, I am the only family member

What do you find to be the greatest challenges in living with LGMD:

The greatest challenge for me is that LGMD is a progressive disease.  My muscles are getting weaker day by day and keeps getting worse.  My mind is not accepting it.   It is very difficult for me to lose my independence.

What is your greatest accomplishment:

My friends and my family are my greatest and I never lose hope in any condition…that is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are today:

Having LGMD has changed everything in my life.  My dreams, my future, my hopes… everything!  Other people think about their careers and I am only thinking about that how much longer I will be able to run, walk or even stand at all.    LGMD is not all bad.  I have learned many things from LGMD – ‘learn ground mode of disabled’.   If any treatment is discovered, I want to become normal.

What do you want the world to know about LGMD:

The world?? First of all I personally do not know about the LGMD.  My doctors don’t know all about LGMD and about the different LGMD sub-types.

Unfortunately, every association or organization In India uses only the English language.   Where on other hand, people with any type of muscular dystrophy are not good in education or skilled in English so there is a very big problem in communication.

And I want that first government to help make doctors aware of muscular dystrophy and all the different types.   They need to open special research institutes for muscular dystrophy.   If the doctors can treat the LGMD, they may also become able to treat the old aged body the experiences weakness…

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

If my LGMD was “cured” tomorrow….First, I would cry so much and then dance like a crazy person …




Rona

06/04/2015

NAME:  Rona     AGE:  35 Yrs Old Unknown -Rona

COUNTRY: Philippines

LGMD Sub-Type: Unknown

 

AT WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed when I was 21 years old.

WHAT WERE YOUR FIRST SYMPTOMS:

First I noticed  I began to walk with a “waddling” gait because of weakness of the hip and leg muscles. I had trouble getting out of chairs, rising from a toilet seat and  climbing stairs. I was losing my balance to when standing.

Do you have other family members who have LGMD:  No.

What do you find to be the greatest challenges in living with LGMD:

The greatest challenge for me is having a hard time walking on my own. Occasional falls that sometimes cause me injuries. Sometimes my physical limitations keeps hindering of things that I can do but it motivates me also to try my best to stay stronger and better.

What is your greatest accomplishment:

After being diagnosed with LGMD, I have always wanted to be positive in life. I had the most challenging job and that is  being a sales assistant as standing for eight hours was hard. But with a lot of patience I made it.

I love swimming and going to places that even I find it difficult to go. I dare to live out the closet of limitations. Because I always believe that I am  never a failure unless I haven’t tried it.

As a mother of two children and a wife I believe that I tried my very best to support the family and to stay strong for them. I choose to be productive and efficient in all the things that I do. That is why I want to be a blessing to others by doing some community work as a volunteer teacher in our community helping children to enhance their skill and knowledge in school by giving them after school service program. All things work together for good if we just see things in a positive way. I stay strong and determined because there a lot of things that I can do and be thankful of.

How has LGMD influenced you into becoming the person you are today:

I know that I have gained respect and trust for others and for myself who have gone through tough, times and triumphed, by placing myself in their shoes, whether they have disabilities or not. I was more hopeful in spite of the sickness that I have there is still a PURPOSE  to succeed. I open my arms to LOVE and HEALING…My legs carry me forward in life…My disability sometimes indicates a fear of moving forward or a reluctance to step through….but…Life is beautiful…nothing is perfect in the world I live in…My physical limitations is not a hindrance…All it takes to live in peace with your age is a positive outlook on life…a happy personality…a lot of smiles…Know that inner beauty and inner strength are the mark of a winner in life, not the age or outer physical appearance. WE are all a WINNER…

What do you want the world to know about LGMD:

We are strong to Live a life of LGMD!

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I want to run and drive.




Tarun

5-28/2015:

Name:  Tarun             Age: 29 yrs. oldUnknown - Tarun

COUNTY: India

LGMD Sub-Type: Unknown

 

AT WHAT ARE WERE YOU DIAGNOSED:

I diagnosed at the age 13.

WHAT WERE YOUR FIRST SYMPTOMS:

I first noticed muscle weakness at age 13. As a child, I had a tendency to walk on my toes. I would fall over when trying to run & also struggled standing up from a chair or the ground,

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE:

Yes, My elder sister too has LGMD

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGE IN LIVING WITH LGMD:

The greatest challenge is finding the energy to do everything I want to do.  I want to be an independent person and I would  resist taking help as much as I can but I have to rely on family for simple daily things. Sometimes it is like having an itch that I can’t scratch.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

My greatest accomplishment is living a productive and active lifestyle despite the challenges that I encounter on a daily basis due to my LGMD diagnosis. I stay happy and keep smiling no matter what. I used to go to the office on my 3 wheel scooter, so many times I fell down from my scooter and had stitches on my face.  People around me told don’t stop driving if you fell we are here to pick you.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

LGMD has helped me in a lot of ways; despite causing me to be physically weaker. It taught me how to keep a smile on my lips without caring about ups and downs of life. It showed how great parents could be. How loving, caring and dedicated a mother could be. How sacrificing and loving a father could be. How supportive siblings could be.  It has also taught me a lot about myself.  I have made life-long friendships with so many special people who have disabilities.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

I want people to know that the disease of LGMD exists. You may not even be able to tell that someone has LGMD. You may see another person and think they just walk differently or slower. Though my country is developing quickly but it lacks  disable friendly zones in public places such as banks, ATMs, post office etc.  Generally people think we are useless and sympathize but I would want this type of attitude to change.  We have disability in our body not in our mind.  Most importantly, I want the world to know that LGMD is not a reason to believe that someone’s life is any less valuable. God can and does use difficult experiences, trials, and suffering.

 IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:

First thing I would probably just drive car till the road ends J and run, sit down and then stand up and then sit down and stand up over and over because I could.




Eva

03/31/2015

Name:  Eva    Age: 33 Yrs. OldUnknown - Eva

Country:  Kenya

LGMD Sub-Type :  Unknown

AT WHAT AGE WERE YOU DIAGNOSED: 

I was diagnosed at the age of 14.

WHAT WERE YOUR FIRST SYMPTOMS:

I had difficulty running fast and raising my hand up with ease. I was never able also to bend and sweep the floor properly when it came to doing house chores.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

No. I am the only one with muscular dystrophy in our family.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:

My muscles are getting weaker by the day and that means my level of dependency is also increasing. It’s hard for me to keep a personal caregiver because most of them do not have the heart, they start complaining just weeks after being employed. I am grateful for the support I get from my husband and relatives who show up to keep my house clean and assist in any way possible.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

Getting married and starting a family with my husband,  Creating awareness about Muscular Dystrophy in Kenya. Many people are now aware of the condition and are glad to have started because I have met more people in the country with the same condition through Muscular Dystrophy Awareness of Kenya and hoping still to do more.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

Because of  LGMD I think I have to plan my days in advance, I cannot just wake up in the morning and say, today am going out simply because transport has to be arranged, I must have an escort e.t.c. I am also very optimistic of the future and my life is influenced much with my Christian beliefs.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

A diagnosis of LGMD  is not a death sentence, you can live your life to the fullest doing what you can at the time. LGMD weakens your muscles but it shouldn’t weaken your spirit. People living with LGMD can work and employers should not shy away from employing us. With the research work going on, plus the trials a cure for muscular dystrophy is in the horizon, I hope it gets here sooner.  

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
I would kneel down, raise my hands towards heaven and worship my God.




Naveen

03/27/2015

Name:  Naveen  Age: 32 yrs. oldUnknown - Naveen

COUNTRY: India

LGMD Sub-Type:  Unknown

 

At what age were you diagnosed:

I was diagnosed at the age of 15.

What were your first symptoms:

I was experiencing difficult in running and had frequent falls.

Do you have other family members who have LGMD: 

No, I am the only one.

What do you find to be the greatest challenges in living with LGMD:

My greatest challenges are in climbing stairs, walking in crowded places and lower clothing.

What is your greatest accomplishment:

My greatest accomplishment is riding my bike.

How has LGMD influenced you into becoming the person you are today: 

I am ready to face any challenge!

What do you want the world to know about LGMD:

I want Support from the world.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would want to go running.




Jane

03/22/2015

NAME:  Jane   AGE: 61Unknown - Jane

COUNTRY: United States

LGMD Sub-Type: unknown

AT WHAT AGE WERE YOU DIAGNOSED?

I was “officially” diagnosed at age 46 but I had symptoms in my late 30’s.

WHAT WERE YOUR FIRST SYMPTOMS?

I was the kid who was never “good at gym.” Looking back I may have had some clues earlier in my adult life but it wasn’t until I was in my 30’s that I realized I couldn’t get up from the floor (or from a squat). 

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD?

My father had LGMD. He passed away in 2001.  (My Dad also had a late onset but he had a pretty fast progression. Sadly he passed before genetic testing was available.)

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGE IN LIVING WITH LGMD?

My progression has been slow and I am still walking but I can no longer walk long distances without supports. Stairs are very challenging for me and I can’t rise from chairs without assistance. For me the most challenging thing is the lack of understanding and the many misconceptions people have about LGMD. I also find the lack of accessibility to buildings and events very challenging. I still want to be with people and do what they are doing but there are sometimes when that isn’t possible because of access issues.

WHAT IS YOUR GREATEST ACCOMPLISHMENT?

I’ve raised three wonderful children who are all successful and loving adults and I have four amazing grandkids. I learned to ride horses at age 50 and took several vacations where I went on long vacation rides with my family. In 2009 I was named “Student of the Year” by the American Riding Instructors Association (ARIA)

HOW HAS LGMD INFLUENCED YOU IN BECOMING THE PERSON YOU ARE TODAY?

 Living with LGMD has made me a more empathetic person. I know that just because you can’t see it on the outside does not mean people are not struggling on the inside. I try to regard others the way I want them to regard me.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD?

 Our knowledge of this disease is expanding exponentially. Everyday we learn more about the genetic causes and I believe with more research support and social awareness we will find the cure.

If  YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO?

 Go out dancing.




Nikita

03/06/2015:

Name: Nikita    Age: 27 Yrs.Unknown - Nikita

Country: India

LGMD Sub-Type:  unknown

At what age were you diagnosed:

Symptoms since I was 21Yrs

What were your first symptoms:

Tripping while running , tiredness on climbing for long.

Do you have other family members who have LGMD:   No

What do you find to be the greatest challenges in living with LGMD:

Currently I can walk , but I need support for climbing upstairs, also I cannot get up from ground level on my own now.  So, stairs, high slopes and getting up from flat ground are my greatest challenges currently.  But as this issue will progress, I feel my real issue will be depending on others for help.  As I am a very independent person and I resist taking help as much as I can.  My challenges will become physical and mental both.

What is your greatest accomplishment:

LGMD has made me stronger in a lot of ways, mentally mostly. I now see how a few things can be done in different ways rather than the usual normal ways. I took some time to accept this change, but I think it makes me more confident and practical in life.  It was a small incident that I wouldn’t be able to forget. It was a trip with friends and they wanted to go river rafting, I wanted to ditch them as I wasn’t sure how I would get in, get out and climb up d hill. My friends pushed me hard and said a funny thing… If you drop we are 5 to pick you up, you aren’t that heavy, brought a smile to my face and I went for it. I not only did rafting, but I went down in the cold water of Ganges and had the best experience. When the rafting was over, we had a hill to climb up, I used the paddles to get up and slowly I was there. One of my friend said….. Proud of you and everyone clapped. My confidence level grew 10 times!

How has LGMD influenced you into becoming the person you are today:

As I mentioned above, I have become more matured, strong and now I see that life is not what we always expect it to be. Things go terribly wrong and we need to put efforts to still keep moving and smiling. Be thankful for what we have and not crib about petty issues.

What do you want the world to know about LGMD:

The biggest issue in my country would be lack of disable friendly zones , we are a developing nation and we do not have right amenities for handling disabilities. It’s not only the infrastructure but also the perception that people have about disabled. Generally people would sympathize and assume that we have to be dependent on someone throughout our lives. I would want that to change. I would want people to accept me for what I am and instead of sympathizing just treat me as a normal person.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would run a mile 😀 , climb upstairs every day and keep myself fit to not ruin my health with any other disease to come.  And yes….. Dance till I drop 😀