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COlisa

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Feb 21, 2006
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120
Hi All,
Dave's appointment was with Dr. Graves at UCLA neurology on July 5th (which also happened to be our 22nd wedding anniversary).

Dr. Graves was great. Spent 2 hours talking with & examining Dave. Unfortunately, he said that ALS is the only explanation for Dave's condition, as no other disease causes atrophy of the tongue like Dave has.

I am a really data-centric person, so it was so interesting to hear a researcher talk about ALS & his patients statistics & experiences with the disease. He was not overly optimistic, but definitely has seen cases of very slow progression & in one case over 30+ years almost no progression. He encouraged Dave to work with our local neuro (we live in Colorado), look into speech augmentation devices (pen and paper for now :) ). Also to start Rilutek & to apply for participation in research studies.

It was not the outcome we had hoped for, but there is some relief in having another opinion that jibes with previous neuros. Dr. Graves was much better at explaining things than the others that Dave has seen.

Participation in research studies does not guarantee anything at all, but at least it will feel like Dave can do SOMETHING to try to fight this disease, and at the same time maybe ultimately help other people who have it.

Meanwhile, only Dave's speech is noticably affected (has started writing stuff down especially when he is tired). He is in the middle remodeling one of our bathrooms & is tiling this week which is no small feat.

Dave goes to see the local neuro next week.


Thanks to all for your input prior to our latest neuro visit. Much appreciated.

Cheers,
Lisa
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nspoc

Distinguished member
Joined
Mar 24, 2007
Messages
113
Reason
CALS
Country
US
State
Illinois
City
Olympia Fields
Hi Lisa -

Thanks a million for getting back to us. Very sorry to hear that the diagnosis was confirmed, but also happy about your experience with Dr. Graves.

How was getting around UCLA? I worked there in the early '90's & found it really confusing - got used to it, though.

I was one of the people who responded to your earlier post - my PALS was a nurse employed at UCLA and Dr. Graves was her first ALS Clinic experience - very positive - despite the bad news. From there she moved to Chicago and lives with us so she can be cared for.

Our experience is that ALS and its progression is very daunting - but we have very definitely been able to live a high quality of life with it. She has lived with me nearly 3 years.

The key is to get adaptive equipment early! For us the 2 best things are Pat's ceiling lifts and her computer. Voice is still OK - mobility is shot. Of course a given is her wheelchair and our van - able to afford it because she used proceeds from sale of her house when she moved in with us.


Biggest downer is lack of funding for supportive care - we must advocate for that as much as for research dollars.

I wish you the best - please keep posting - I have been on the lookout for what you have to say.

Beth
 

seanmucci

Member
Joined
Mar 5, 2007
Messages
17
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Ill
City
Chicago
Reply Ucla Visit

I Was Pleased To Know A Neurologist Would Sped 2+ Hours With A Patient.sad About The Diagnosis.i Will Know My Fate July 24. The Als Dr. At Mass General Hosp Will Sit Down And Talk To Me. After 2 And A Half Years Of Predicting And Waiting But That Is Some Of The Cross Many Before Me Have Borne.pray For Me As I Pray For All The Generals In This War We Will Win With Great Patience.god Bless You All:) :) :)
 

COlisa

Distinguished member
Joined
Feb 21, 2006
Messages
120
Getting around UCLA was not so bad because we were able to stay at a place called the Tiverton House. It is a hotel run by UCLA that is specifically for patients and families of people from out of the area being treated at UCLA. It was only 2 blocks from the Medical Plaza where Dave had his appointment. It was great to stay at a place where we did not have to be so self conscious about being emotional, especially after the appt. People there were great, very accommodating & it was very reasonably priced with a great location.

Fortunately the Dave's ALS progression appears to be pretty slow. The best we can do now is go on with our lives.

Thanks to all,
Lisa
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Als

Hi Lisa I am sorry to hear about Daves DX But it may help to know I started with speech problems 8 years ago and only had to quit working a year ago because it when to my arms However it did take 7 years So hopefully he will have a slow progressing as well. I dont know why the doctors took 6 years to diagnosed me. I heard ALS is the only disease that effeects the tongue But no one would commit. Good luck Pat
 
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