Awareness

Medical students are most certainly taught about ALS . . . BUT . . . they are also taught about a gazillion other diseases. It really is incredible the amount of information they are asked to memorize, so much so, that some of it inevitably gets lost.

Those that choose to become neurologists will then be taught about diseases that affect the nervous system again and in much more detail. Once again, however, if a neuro doesn't "see" a disease, then the details about the disease could very well be lost if he/she doesn't keep up with the literature. That is precisely why there are specialists within medical specialties . . . meaning a neuro who specializes in ALS for example.

There are a lot of good neuro's out there but there are certainly a few bad ones as well. Sometimes we can even see it as they are in medical school. We as profs will look at each other and say "how on earth did that person get into the medical school" and we make sure we stay clear of any place he/she practices medicine. :smile: It's always a good idea to shop around for a good physician.


Captain Al

If you make a bumper sticker that says "google ALS" do you have any idea how many people will self-diagnose themselves with it? :shock: This forum would be completely inundated and would probably crash.

There are no words to convey the depth of sorrow, anguish and anger we are still experiencing, after my son was examined by the neuro in charge of the UC Davis ALS clinic, who stated he believes my son has ALS.

We haven't told many people but those we have told, have literally no clue what we're talking about. One said 'oh like that baseball guy, Lou something?' To be completely honest, when the first neuro said he had ALS or MMN, I had to google it and see exactly what he was talking about.

I'm the queen organizer. For example: You need a tri-tip dinner for 500, with eat in and a drive thru line, and don't forget the silent auction and entertainment? No problem.

You want someone 'kidnapped' and flown in an open cockpit airplane over a field where there are 700 people holding papers over their heads spelling a phrase, with a second airplane flying over video taping the entire event? Pfft, is that all? No problem.

I have planned more large events than anyone would probably care to read about and it's time to use that experience. It's too early in this journey with my son to plan actual events at this time but I've already started gathering contacts and other useful information. I will do something to raise awareness of ALS in this community either by a 'Walk for ALS' or a 'Relay for Life' type of event, something to increase ALS awareness and hopefully raise funds for research.

I refuse to sit crying in the corner and allow this disease to silently take him.

Valva ... I hear you, and applaud your passion. That is what it will take ... passion! Please check out ALSmatters.org, where we are brainstorming ways to get the word out. We need your energy, passion, brains and strength.

Wright: You said, It's always a good idea to shop around for a good physician. Tell that to my HMO!

And yes, you're right again, Wright: as we get the word out, half the people who hear of ALS for the first time will immediately decide they've got it. As I said in a previous post on this subject, you'd better quit your day job!

ALS and our MDs

linray said:

Hi BethU
Good work trying to educate the MDs. It is so sad... My husband, along with his now diagnosed ALS, has Rheumatoid Arthritis. The Rheumatologist kept saying his problems were related to the RA! We tried other MDs but they all said the same thing. When he finally went to physical therapy RX by the doc, the very young therapist said the first day "I think this is neurological!" Amazing, isn't it?
Lin

Click to expand...

Hi Lin,I am from NJ as well.It has taken us a year and a half to get what I think is a diagnosed of ALS.Our local neuro said"He is lucky if he sees 1 a year. We are now going to UPenn AlS clinic in Dec. We went to JohnsHopkins as well.They thought it was ALS there too but due to insurance issues we could not go back.I just went to a well spouse meeting in Manalapan last night and it was really interesting an informative.Good Luck to you and your husband.If you are ever interested in a meeting ,I will give you the info.

WOW. I just found this video on our forum. More people need to know it is here. Talk about raising awareness, Get a tissue and watch:

YouTube- ALS - Head and Shoulders

Heart rendering video. Should not have watched it at school but glad I did. Thanks for posting the link.

Great video, huh. We are hoping to get permission to get this video out to stations in the USA. Short of that I think it works to send it by e-mail.

Sharonca

MTPockets - I have had a business card made up through VistaPrint web site. You can get 250 for free. Mine says

There is No Cure for ALS
There is No Treatment for ALS
"Lou Gehrig's Disease"
For More Information Please Join
Website address
ALS Matters to Me
My Name
My e-mail address
Diagnosis 12/13/07

What you do is add the words on whatever line you want however you want on their template. So you can see what you are getting and have whatever background you choose - or add in your own background for FREE. Pretty cool.

I also ordered two small 4x6 deals for the windows of my car. You can get car door magnets, all kinds of things.

Obviously my card is to promote awareness and the new web site. To me the compelling words are that ALS matters to me - and a year ago it didn't.

I also plan on having a car windshield sunscreen made up by a friend. Then every time I park someone will have to read about ALS. Hope it makes them curious.

Sharonca

Hi Shrimpbox,
Good luck at UPenn. We tried to get an appointment there last March, but the first one available was in Feb 09. We go to the ALS clinic at Robert Wood Johnson in New Brunswick. The staff is wonderful. Hope to see you at a well spouse meeting soon.
Lin

Thanks for the site Sharonca. That is a good one. I appreciate the help.