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gooseberry

Extremely helpful member
Joined
Jul 2, 2014
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3,501
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
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Tampa
Apparently I send too ,any emails about als to Secretary Mcdonald. I now have a Dr. Donald Higgins who will listen to concerns about als treatment,benefits,waiting times etc.

If you have anything you would like me to bring up, please let me know by noon tomorrow.

Thanks,Steph
 
Consistency between regions on stuff like beds, vents, enteral formulas.
A defined escalation path for appointment issues, care disagreements.
 
I concur with Greg about consistency between regions. Equipment and home health care. Why do some regions provide Trilogys and others won't? Some give more than 10 hours a week, others don't. I know they each have their own funding--maybe that's it, but that sucks.

Centralized management of all ALS patients under D r Richard Bedlack, head of neurology at Durham VA Hospital and head of the Duke ALS Clinic.

By the way, lady, you ROCK. Way to shake the tree!!!!
 
Well Becky, I went thru a bunch of threads and thought about our experience. I was thinking of ways the VA system for pals could be improved. Then I thought that it does no good if I dont say anything so I did. I have written to him several times about various issues. It took 2 emails and a phone call to get any home health approved. Then it was too late.
 
Here is what I have so far..
 

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Steph what about free home counselling?

I haven't read the vent threads, but maybe just talking things through might help. Even a bit.
 
I agree with all the suggestions. Homecare, I think is the biggest issue and counseling. Thanks Steph.
 
Steph, I LOVE the idea of a focus group. Including folks from a variety of regions to compare experiences would be great.

I've sent you a PM with a few more things that came up with Matt and I were discussing this last night.

Becky
 
Steph for President ! ! !
 
I wonder if the va could tie into project MinE and do genetic testing?
 
We should ask, Greg. One of my issues is lack of trials available. I think that is one reason so many pals go to private clinics on top of va.
 
Ok, I am part of mvp but I wasn't aware of the genetic aspect.

So, new item for this effort: provide vets with their genetic info!
 
I got an email this morning Greg talking about mvp and what it is doing. I think the gene portion is a new arm of the study.
 
Cool.
Email from whom?
 
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