Definitive diagnosis

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LeoGreene

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PALS
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Pomona
Went in for an EMG this morning and afterwards the neurologist confirmed his original diagnosis of ALS. He gave me permission to have a videographer record the procedure and I interviewed him on camera afterwards. I'm a professional journalist - a former TV journalist - who now produces news videos for newspaper Internet web sites. I work for the Los Angeles Newspaper Group and am training photogs how to shoot and edit video. Anyway, I've been given the go ahead to produce a series of 5 minute first-person videos on ALS. I hope through my own story to raise awareness and perhaps raise funding. The editors suggested I turn out a video and a written column every month. As soon as the first one is online, I'll give you the web link. You'll probably need the latest version of Quicktime to see the video. I'll let you know.
Leo
ps And if anyone has ideas for segment topics, let me know. The first installment will probably just deal with getting diagnosed -- and maybe touch on the fact it's an orphan disease with little research funding. I'll also probably want to include links for people who want to donate.
pps Crummy disease! I feel I'm going down too fast.
 

Al

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Sorry about the news Leo. We all feel we're going too fast. Not sure if we are but it sure feels like it. Good news about your project. Awareness is a big key to getting research funding. Make sure you give us the link. Looking forward to seeing it. AL.
 

LeoGreene

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Thanks

Thanks for giving me the link to the article, Maggy. Boy, this has been some week. I just looked at the raw video of my EMG and the doctor's pronouncement. Earlier, I took my 18-year-old son and his girlfriend out to dinner. The disease is progressing quickly and walking and talking is becoming more and more difficult. Are their plateaus? I sure need one. I feel like I'm falling off a cliff.
The dinner went great and it was great to see my son with a good woman. It makes it all easier.
 

hope

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Oct 1, 2005
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Leo,

I am sorry you have this horrible disease. My husband was diagnosed almost one year ago and is now very ill. We are holding on tight for a cure. One thing that my husband and I have found since this disease came into our lives is how expensive this illness is and the lack of help for equipment. We read about all the money going into research and that is wonderful but we said to the doctor families are struggling to keep loved ones at home and desperately need equipment to be able to do that. I believe some of this money should go towards helping the families with the financia l stress. It is sad to know that while these researchers are working day and night to find a cure that the patient who is suffering is doing without. Can you imagine a patient with als not being able to have the things they need to enjoy the life they have. We have found everywhere you turn that the funds are not there for the much needed equipment for many. Some may not agree with what we believe and that is okay but we feel some of this money would help an als patient and their families live in dignity. It is hard enough to have this disease but for those who cannot afford the things they need is just not right.

hope.
 

anna grace

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colorado
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windsor
also have sick husband

My husband was diagnosed with Bulbar ALS 5 months ago,although he has been having symptoms for almost a year. He is 65 and to my eyes he is going down hill fast. His speech is so bad now that some days like today,I can barely understand him. He also is having a terrible time with excessive secretions,that are becoming thicker,and cause him to have more trouble with swallowing,and with his speech,and this has greatly increased his frustration level.He is on robinol for this,but is becoming less effective. The helplessness that I feel is over whelming,I feel like I have let him down. Do you feel like this also? He is going to have a feeding tube put in fairly soon,we go to see the Dr. in a few days. Thanks for listening. Anna Grace
 

ronney525

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Dec 14, 2005
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the whole thing stinks.......... however w diagnosed of als u immediately qualify for disability there is no waiting period....., as for equiptment, there are lending places through clinics. also medicare shouuld be automatic, and will cover many things w a dr. script.
and its all very frustrating and outrageous.....
 

CindyM

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Hi Leo- I am so sorry for your DX. I saw your article and found it sensitive and very helpful. Now it stinks that you have this horrible disease. I can't think of anything to say except that I am sorry, and that feels like much too little a response. Please keep in touch.
 

liz

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Nov 9, 2006
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Leo -

Sorry to hear your news. It hits like a ton of bricks, I know.

Liz
 

Beebe

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May 2, 2006
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Diagnosis
4/2006
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oce
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new jersey
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forked river
Hi Leo

Hi there , I've been following all your articles and videos. You haven't posted for awhile. You are doing a wonderful thing for awareness! My son-in-law Jack and Stephanie found your articles very enlightening for awareness. If you need any input we'd be glad to help. We are all in this together. My Best to you, Beebe ps. My neice has created a beautiful Web site for Jack she's still working on it I'll email it to you.
 

Nita

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Nov 16, 2006
Messages
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PALS
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england
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liverpool
i Leo hard to keep saying sorry all the time myself and two brothers look after my mum
she has been having symptoms over a year i cant believe it
 
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