Old 11-10-2008, 05:31 PM #1 (permalink)
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Default Awareness

Just finished my annual check-up, and at the end, the doctor said (AND I QUOTE), "Aside from the ALS and the heart disease, you're in very good shape."

Wonder what I have to do to be considered "sick"?

(And, aside from the engine and the transmission, my car is in great shape, too, except for the brakes and the tires.)

But speaking of awareness: My PCP is a resident, closely supervised by other doctors. During the exam, she asked how my ALS is doing, and I said it was OK. Then she said cheerfully, "I know nothing about ALS." While I was mulling this over ... that one could be an MD, finish your internship and almost finish your residency, and still know nothing about ALS ... she said, "The most important thing is that we don't trigger a flare-up of the ALS."

Flare-up? She was confusing ALS with MS ?!?!- This is scary. She also had me stick out my tongue, and she looked at me very worried and said, "Your tongue is really atrophied."

Well, yeah.

Her residency ends next July. My personal goal for increasing awareness of ALS is to tutor my PCP on this disease. I may be the only PALS she sees for a few years, but some day another PALS will walk into her office, and I want her to know enough to at least send them to a neuro.

How can MDs know nothing about ALS? And how can I tactfully bring her up to speed on this? I think when I get one of Jimmercat's T-shirts, I'll wear it to the next appt.

I did take the time to show her the atropy on my hands and arms, and gave her a few moments to study them, which she did. It's a start . . .
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Old 11-10-2008, 06:27 PM #2 (permalink)
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Flare up!

I guess I have to get the lead out and see about getting those shirts printed!

Will check tonight about neighbor's screen printing business and other options!
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Old 11-10-2008, 06:30 PM #3 (permalink)
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Default Good for you!

Bethu,

You are on the rght tract, I agree our Doctors all including a few at the
ALS clinics need more educating on ALS. I had this same problem over and over again with the ALS clinic and seemed to be educating the Doctor about various problems through my research. Sometimes you wonder about all this.

Of course, this site is right on top of the subject matter with first hand experience.

The Doctors and public need more kowledge in this area, I feel.

God Bless!

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Old 11-10-2008, 08:42 PM #4 (permalink)
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flare up? Are you kidding me?

I suppose as we increase awareness, it would also help to increase brain cells too, huh?

Beth, keep up the good work, I actually had a patient ask me today if I was having trouble with my teeth. When I told her it was ALS, she continued to ask if my teeth were getting better.

But a medical resident? Wow

Keep the faith,
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Old 11-11-2008, 04:40 AM #5 (permalink)
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Well.......it is a shame but not surprising, considering that even some neurologists don't know much about ALS.
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Old 11-11-2008, 12:18 PM #6 (permalink)
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Hi Brenda,
Hate to sound as stupid as the MDs, but how has ALS affected your teeth? My husband (PALS) is having a lot of problems now with his teeth and I never connected it with his ALS.

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Old 11-11-2008, 12:20 PM #7 (permalink)
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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?
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Old 11-11-2008, 02:12 PM #8 (permalink)
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Smile

Good start with the education of the Docs. It is a challenge. I know every time I go to one, they have questions and I talk about all the info on the Forum. A couple have asked for the address and said they would check it out. I hope they were serious.

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Old 11-11-2008, 03:52 PM #9 (permalink)
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When I was diagnosed, I was the first ALS patient my GP had. He has 3 of us now. He occasionally asks my opinion on things about ALS. I live with it and have time to research things more than he does. I moved a while back and now it's 30-40 min. drive to see him. Could change but too much trouble to train a ney one. LOL.

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Old 11-11-2008, 05:29 PM #10 (permalink)
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hey lin,
My teeth-wow.

After my initial diagnosed in June 08, I was on a mission to rid myself of amalgam. So, I put myself thru 4 root canals and 4 porcelain overlays or crowns in about 3 weeks time.

Many of the days prior to my diagnosed, I would just "blame" my funny speech on my dental work, or upcoming dental work, just so my patients wouldn't be upset.

In the last 2 weeks, I have noticed I have to use my finger, or a toothbrush, to "clear" the top rows of my teeth after I have eaten. I have no trouble chewing, swallowing, it's just that loss of my tongue muscles to clear my mouth. I posted somewhere about not being able to do that tongue across the top teeth move like in the old commercial!

hope that helps,
talk soon,
hugs,
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Old 11-11-2008, 07:55 PM #11 (permalink)
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I'm glad you said something! There have been many
occassions (with my Dad before he passed away) that a doctor or EMT's (responding because he had fallen) would tell him to help himself up or move his leg. It was hard restraining myself from yelling @ them about their manhandling him.

Just yesterday, the pharmasist asked me about my meds & I explained that
I'm in the process of being tested for ALS & he asked me what it meant.
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Old 11-12-2008, 08:43 AM #12 (permalink)
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Although these types of incidents are infuriating they are also the type we need to capitalize on as Beth has. We need to find a way be it a business card or whatever to inform people about the disease. The more people know the better. Awareness is about capitalizing on those moments and educating because ALS matters . Sorry, I had to do it.

Last edited by David : 08-25-2009 at 05:26 AM
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Old 11-12-2008, 10:34 AM #13 (permalink)
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I think that awareness in our own communities starting with our family and friends is so important. Whether it be a T-Shirt, button, business card, car decal, car magnet, car sunscreen... all of these things bring awareness in a way that the next time a person who is clueless hears "ALS" they will remember that they heard it before. Someone told me yesterday that they could not believe that they knew two people with ALS. I was dumbfounded to hear the other person was their niece who is 14. Yikes.

I have to remember that just a year ago I too was clueless about ALS.

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Old 11-12-2008, 01:04 PM #14 (permalink)
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Cool Bumper Sticker for ALS? Cards?

Alright already. I have put it off long enough.

I am going to have bumper stickers made up, if possible, to put on the back of wheel chairs, cars, etc. and cards to hand out with ALS basic info on them. Someone needs to do this, so I will.

Any ideas about content on the cards will be appreciated. Needs to be brief so it will fit yet give an overall view. Please pm me your ideas.
I had thought of just putting "Google ALS" on the back of my wheelchair for some time, but that just seems to lack enough umph.
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Old 11-12-2008, 01:12 PM #15 (permalink)
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Great Idea !

They are looking for any and all ideas to increase awareness, and you are a VERY creative guy ! We've got to get serious about getting the word out.


Last edited by David : 08-26-2009 at 07:29 PM
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