jimercat/emory

[Felicia38]

Hello jimercat,
I didn't know how to respond on the message you sent me. I marked it as read but didn't know how to send a reply. computers are not my thing, i guess you can tell.
anyway i wanted to say Thank you for your advice and i will call today emory today.
our appointment is at 10:a.m. tomorrow. Do you know if they do all of the necessary test that day or what do we have to look forward to on our first visit? My husband is very emotional right now, the last few days with him has been very hard. My husband is convinced he has als and i am still trying to hold onto hope. As a car giver what do i need to do to help him get through his bad days? I really appreciate having this forum
it has been my only place to let some of my feelings out.

Thanks again.

 

[brooksea]

Felicia,

As far as testing, I cannot tell you about that. When my husband went to Emory the first time, it was for a 3rd neruo opionion and all tests had already been run by a very well renowned neuro, plus an ex-Emory ALS Clinic neuro. So, tests, such as EMG, etc were not necessary. Dr. Glass performed a physical exam and studied the results of the findings from the other two neuros and confirmed the ALS diagnosed. Still, we were there almost all day!

You may want to take a newspaper, book or magazines with you and some bottled water. There will be an ALS Association volunteer that can offer boxed juice and snacks. There is a cafe on the 2nd floor.

Write down ALL of your questions, even if you think them silly or morose. Believe me, they've seen it all! If they don't know the answer, they will find it and follow up with you.

I know this will be a very tense and emotional time for both of you. It's OK. That is completely understandable. The whole team at Emory will treat you with respect.

As far as what to do as a caregiver- right now you will probably not be able to keep your emotions out of the equation. But please do try to support your husband as much as you can. Tell him "We can do this together!"

Please, I hope you will come back to the forum and let us know the outcome of your visit at Emory.

Good LUCK!

 

[Felicia38]

so you got a diagnosed the same day? My husband's doctor thinks that he has als due to his EMG findings, he said he didn't even have to mention to him about his symptoms because it shows up on the emg test. If the doctor diagnosis him tomorrow what do they usually do from there? Do they tell you how far his progression is? Thank you so much for your kindness and help.

 

[brooksea]

Yes, we got the diagnosed the same day.

Progression rate is rather subjective if you ask me. I mean the patient has to report the symptoms and the clinic rates those symptoms on an ALS Functional Rating Scale.

Here is a link funded by the MDA that has the questions from the FRS:

http://www.alsconnection.com/ALSFRS.asp

This scale is used to determine progression rate.

They will also measure breathing.

Speech Therapist will probably judge swallowing ability.

Weight also plays a role. (please keep the weight on)

Balance is looked at.

Weakness is determined upon physical exam.

Reflexes are looked at.

Keep in mind that although they use all of this data to determine progression, an ALS patient can plateau or their rate will speed up and then slow. There is no set rule. Everyone is different.

After reviewing all of this, they will determine if your husband needs any assistance, such as a Bipap for breathing, an AFO for drop foot, a speech device, or a walker or wheelchair. They will also determine if he might benefit from an antidepressant. He will be given the option of going on Rilutek to possibly extend life by about 3 months.

The good thing about going to the clinic is that you get to see all the specialists on the same day in the same room. This eliminates the inconvenience of having to make multiple appmts with many different offices and you have one team tracking the patient. It may be a pain in the butt to travel there, but IMO it's worth it!

I'm sure I've left something out. But, I hope I've explained a little bit of what you may expect. Here is quote off Emory's ALS Center web page:

Our ALS Center Team includes physicians, nurses and other healthcare specialists who approach ALS as a challenge that requires physical, social, and emotional care of the patient and the family. Our Team includes professionals in respiratory care, swallowing and communication, nutrition, and physical and occupational therapy. Other team members are a clinical social worker, specialists in wheelchairs and orthotics, and a representative from Hospice. In addition, we have major collaborative affiliations with both the MDA and the ALS Association of Georgia, whose organizations provide important and unique resources and services for patients and their families.

Here's Emory's link explaining the role of each specialist:

http://www.neurology.emory.edu/ALS/clinicalServices.html

Just know you are not alone in this fight!

 

[Felicia38]

Thank you so much for all of your help. I will let you know what we find out at Emory after we go tomorrow.