Saturday, April 21, 2007

What would you attempt...

if you knew you could not fail?

I saw it on a sign yesterday, and it set me to thinking. There are many things I don't even attempt because I envision so little chance of success. But what would I attempt if I knew I could not fail?

Here is number one on my list of things: I would get to work setting up a clinic where patients who are suspected of having periodic paralysis, and those who do have it, could come for care.

I'd need a couple of doctors to staff it; a neurologist and an electrophysiologist. I need a rehab specialist, perhaps a physiatrist, a physician who specializes in movement, the mechanics of muscle and bone. We'd work closely with a geneticist. Students would be welcomed through fellowships and research grants. Because the patient cohort would be large it would be possible to do studies which would add to knowledge of the PPs.

Recognizing that not all patients are strong enough to travel, our clinic would have the latest in video conference technology, so that our experts could guide any physician with a web connection and a web cam through an exam, and advise them face-to-face on testing procedures, diagnostics and therapies. With that same video equipment we could have scheduled video education sessions with physicians, medical students and with patients.

If I knew I could not fail I'd begin today to make it all come true, and no patient with periodic paralysis would ever be subjected to years of misdiagnosis and accusations that they have conversion disorder, or somatization syndrome. Mothers with affected children would not be labeled hysterical because they asked for medical help for a child too weak to crawl out of bed or attend school.

Paralyzed patients would not be placed in Emergency Room supply closets or in a ward with drunks, so that they are subjected to sexual assault while paralyzed and vulnerable. Patients would receive test records in reasonable time and have them explained carefully and with compassion. Patients would not risk losing their diagnosis and treatment every time their physician changes. Patients would be treated with dignity.

If I knew I could not fail I would begin to enlist others to help make this dream come true. I would stop saying, "It can't be done," and start saying, "When our clinic opens...."

Today I have decided that I cannot afford to fail. The cost in human potential is too great. Today I will begin to do something - and I cannot fail.

The first step is to enlist the aid of as many as are willing to help. Together we will not fail. Drop me a note in the comments if you are wiling to help in any way. Code your e-mail address by changing the @ sign to the word AT, and we will embark on the road toward building the clinic we need, if we and our children are to reach our full potential.

6 comments:

Anonymous said...

Well done Deb. You have just made me realize that I am fighting PP for my self with out thinking of others. I want to get better for me. I think now that that is the wrong attitude. People are far more important. I am sure there is some thing I can do to help even though my brain is mush most of the time. Let me know how I can assist from here in New Zealand.
You have my email address.

Stephen
Hypo

Deb said...

Thank you Stephen!

One of us has little impact. All of us together can accomplish a great deal. We've had patients from 32 countries on the List, so this is truly a world-wide problem. We need to start working for our common good, which will benefit us all!

Linda said...

We are absolutely on the same page Deb.It is time we stepped out of our shadow on the web and became a real life force. This is something that can be done, I believe in the power of a united front. There is much to do and time is flying - let's get to work!

Sheri said...

As a parent of 3 young men and grandmother of 2 little ladies, I am concerned about their lives. My sister and mother are also affected and I am the only one with a diagnosis. Count me in and let me know what I can do!

s.tetidrickATgmail.com
Hypo

Anonymous said...

Wow, I have found it so hard to find PP resources. I am in the UK and have all the Normakalemic PP symptoms, but the NHS is so crap they ignore what I say and do the wrong tests. Several Drs have conflicting views and no one will do the simple Oral Potassium challenge test. Because it is so rare and even more so over here if not unheard of that thay are more inclined to ignore the signs and just do routine tests. As a result because they all come back ok, I must be sick in the head and thus must see a head Dr. I am so frustrated. I am down because of the illness but it is not the underlying cause!
It is so good to find you on here.
I am not sure how I can assist but my email is blippetyblipAThotmail.com for anyone who wants to contact me.

Regards
Becki
Suspected Hyper or NormaKalemic PP

Lea said...

Hysterical MOM says-

count me in!

Lea (Jacob)
Birmingham, AL
You have my email