THE L-Team -volunteers helping others find help with lymphedema
Taking charge of your lymphedema requires a few things One is to understand the disease, two is to find a good therapist, and three is to get a ritual going doing the things you must. We of the L-Team are working on helping others like us with the disease do just that.
Finding a Therapist
There are lists of therapists in various places. Our
goal was to bring them into one central location to
help people find a therapist. Thus we hope that this
will help others find the help they need. This will
be a continuing work and will be placed on the website
www.manuallymphdrainage.com Feel free to forward it
around,email it to people in need and if you find
additional lists let us know. Check the therapists
out and be sure they are well trained and share your
vision of how you want to handle your condition. We
What I wish doctors would tell people with lymphedema at the time of identification by Dean Hughson:
1. You have a condition that we don't know how to
'cure'.
2. What we know works now is manual lymph drainage by
a trained therapist (at least 120 hours training by
one of the acknowledged training groups),wrapping or
compression bandaging, and exercise.
3. We don't recommend surgery at this point but it is
being studied in Sweden and Italy now but surgery in
the past has proven to be dangerous and disfiguring
and even life threatening.
4. Some people believe that some herbal
medications,such as horse chestnut and bioflavanoids
are helpful. US research is pretty much nil but there
is some research from Germany and Australia that
indicates it helps. If you are going to do it,do it
under medical supervision.
5. Work on self image. Having a visible handicap is
psychologically hurtful for many and you must learn to
deal with your perceptions of society's perceptions of
you as different.
6. If you work on these things,you can have a fairly
normal life as you await developments and treatments
that are easier to live with.
FAMILY FORTUNE by Dean Hughson
In 1865 my ancestors had a problem. Food in Middleton,County
Cork,Ireland
was short. What we would later know is that the Irish were starving
because
of potato blight but more importantly because they continued to export
their food to their English property owners---they feared being
homeless
more than hunger. A decision was made to put young Mike,age 11,into a
potato sack and place him on a ship that was going to New York. The
older
brothers, Tim and Dan, took the ship captain out for a drink. Later
when
the captain realized that he had a young stowaway he couldn't drown him
because he was a friend of the family so young Mike was allowed to go
to
New York. When he got off the boat at age 11, the other Irish took care
of
him. He got a job as a horseman at a rich person's house and later
moved to
Illinois to work at a seed company. He saved his earnings and brought
his
father,brothers, and several sisters. They all worked and in the early
1870's they walked to Braymer Missouri in rural northwest Missouri and
bought farm land for 50 cents/acre that reminded them of Ireland. Mike
became wealthy and it was reported in local press that when he died he
was
one of the wealthiest men in that area. He couldn't read or write but
could
make his sign but he had a daughter who did those things for him and in
the
Irish tradition she never married but stayed home to take care of her
parents. His oldest son,Jurd, married Ole and they had 4
children,amongst
them my grandmother Sara.
My grandmother used to walk me around the family cemetery at Black Oak
from
when I was 6 years old. I suppose some would consider that strange but
it
was how I learned the family history. Grandma would say "That was
your Aunt Fanny--she was so prissy." I felt like I knew all of the
family,many who had been dead for 50 years at the time. Knowing the
stories
of the family helped instill pride.
There was only 1 picture of my grandfather Jurd sitting on a hill at
our
family farm. I always wondered why his shoes were untied. He was 400
lbs,as
have been most of the men in our family,myself included (though I am
now
350) My grandmother used to tell me about his odd practice of liking to
sleep nude outside on the screened porch when it was hot. My uncle,his
grandchild,liked to play around with him by saying "Grandpa,do you hear
a
car?" This would cause the old man to lumber up from the sofa and go
back
inside fearing that he would be seen naked on his porch.
I never realized that he had lymphedema until I was older and looked at
the
pictures closer and realized the reason he couldn't tie his shoes was
because he had a disease that he would pass on to me (lymphedema tarda)
and
to my daughter Liz (at age 9-she is now 17). I intend togo to Ireland
again next year and see if I can find pictures of other people in my
family
who may have had it. One doesn't think about these things
happening----but
like getting blue eyes from your mother's family,it happens. Would I
have
not had kids if I knew? Absolutely not.....our lives,even as people
with a
condition, are good ones and life is good.
Now, at 50, I am the guy walking around the cemetery with my
children,and
in the future my grandchildren,saying "That was your Grandmother
Sara--she
liked to dance and had 5 husbands.". I hope that my grandchildren
don't
have lymphedema but we'll deal with it if they do and with some luck, a
cure for our condition/disease will come. Thanks to my ancestors for
the
gifts they gave me,including lymphedema (It could have been a worse
thing,eh?). It was truly the luck of the Irish that gave me the good
life I
have today,blemishes and all.
Dean Hughson
Inner Voice of Lymphedema by Dean Hughson
3 years after learning I have primary lymphedema one starts gaining some 'wisdom' about what having the condition that many of us here have.
When you first realize what you have,you start your search for info. If you are unfortunate enough to get bad medical care,which I was in the beginning,you may have to undo some damage. The low point for me was being in an emergency room with a couple of doctors trying to set up an IV into my leg,not realizing the damage that they could do. The pain was the only thing that prevented it from happening. If you are unfortunate enough to meet some doctors you will be told "Look,you have a thing that can't be helped. Just learn to live with it." For some of our brothers and sisters who got their lymphedema by surgery error it is hard to deal with your anger but thankfully it is getting less and less normal for it to occur that way.
There is an inner voice in us all that says something to the effect "Well,pilgrim,now what are you going to do?" (in your best imitation of John Wayne). What you are going to do is this: you must gain all the knowledge you can,learn to live the life of someone with a disability or as I like to think of it 'altered ability', and learn how to control your treatment/rehab. No one of us would tell our mechanic "Just do what you think is right"...nope,we ask for information and quotations. You have to do the same with lymphedema---what is it you are planning to do to me,what will it do to me, and are there alternaties? Assemble your treatment team---for me it is an excellent Vodder trained MLD therapist,a physicians assistant who visits me at home and has bothered to read about lymphedema, my pharmacist, and my listservs which give me fresh info. As you 'age' with this disease,you start seeing the 'newbies' coming onto the list and realize that the initial information stage is most important in gaining a 'normal' recovery.
The inner voice in you eventually starts saying "Ok,I can handle this.". You realize you are not 100% all the time (my cellulitis the last 2 weeks made me feel mortal) but you also realize you can overcome the physical and emotional problems of this disease. For our younger members it may be a bit harder in that you are still seeking your mates in life,etc. and self identity is more difficult but all in all,we do recover and we do adapt.
May your inner voice tell you that it is ok to be different. You can dance (even if in a wheelchair), you can fly airplanes(like this old lymph guy is learning), and you can have fun (last week I was dancing with my high school tribe at a mini-woodstock.
Life goes on and so will you. Stick around here long enough and you'll learn more than you want to know about lymphedema and yes,about life and your inner voice.
Dean Hughson
www.manuallymphdrainage.com
primary lymphedema is my challenge but I am not afraid.
if you have lymphedema and are impaired and can't work in the US,you may be eligible to receive social security disability. Take a look at the below info.
A. Disability Evaluation Under Social Security (SSA
Pub. No. 64-039) contains the medical criteria that
Social Security uses to determine disability. It is
intended primarily for physicians and other health
professionals. This 205-page book can be obtained free
of charge by faxing a request to our Fax Number, (410)
965-0696. You can also write or call:
Social Security Administration
Public Information Distribution Center
P.O. Box 17743
Baltimore, MD 21235-6401
Telephone (410) 965-0945
Wasting Away in Lymphedema-ville by Dean Hughson
Every day nearly I get emails or phone calls from people who are newly diagnosed with lymphedema and are afraid that their lives will be changed negatively.
I always point out to 'newbies' that life isn't bad for most of us. Some unfortunate people end up in wheelchairs or bedridden but most people continue to be able to do most things---they just must adjust their lifestyle a bit. The biggest changes are psychological ones for most of us---dealing with our feelings of 'ugliness' because the condition makes us look a bit different. For we older onset people (47 years old when it came on me) it isn't so difficult because we have our identity pretty much intact but it is a major problem for younger people. But slowly but surely you will get yourself moving with it.
The project at hand is to learn everything you can about lymphedema and specifically your version of the condition. It runs the range from mild swelling to major grotesque swelling and disfigurement. But all can benefit from treatment and proper lifestyle changes.
You aren't going to 'waste' away from this condition....many of we 'lymphs' exercise,even jog,and hold a wide range of jobs from clerks to doctors. We are married,single,divorced,black,white,yellow,brown,red skinned people with a diverse economic and educational backgrounds. The best thing to do is to hang out on the listservs and/or join local support groups and learn everything and ask the questions that are hard to ask 'normies' who may not know the condition.
Lymphedema is not a death sentence....from what we know right now it is a life sentence as we don't know the 'cure' but we know how to do the maintenance of it to make our lives comfortable. Stick around and learn the secrets of success some of our members have to share.
