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Raul_Chicago

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Joined
Aug 5, 2010
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24
Reason
Loved one DX
Country
US
State
IL
City
Park Ridge
All of the bloodwork, MRI, EMG are in and my dad has ALS. I have known for a little while, but getting the final word was hard for my dad. My mom is still in denial but I know she will come around. My dad is very depressed, rightfully so. I tell him about all of the wonderful people in these forums that enjoy their lives and still have hope and positive attitudes, it is inspiring. I hope he comes around soon. Though I feel he is rather far along in his progression already. He can still walk, but has drop foot on the right side, he uses a cane and walks slow. His appetite is quite bad so we struggle to get him properly nourished. The worst part is his breathing. Though they are saying his pulmonary function test was good. The results of the sleep study are being reviewed and hopefully he can get a bipap soon. At 69 yrs of age, I don't see him making it too long at this rate. I try to stay positive and hope he chooses to fight. We are scheduled for a 2nd opinion at Northwestern University Hospital, but it is more of a confirmation with a specialist sorta thing rather than a hopeful one. I wish there was more I could do for him.............
Raul
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I am sorry to hear of the diagnosis. I hope he has many years yet!
 

brooksea

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Joined
Sep 27, 2006
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5,171
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Other
Country
HM
Sorry, Raul! Could he manage to breathe a little less force during FVC tests? My husband actually had pneumonia at the time, but that helped him qualify through Medicare. He shouldn't have to have a sleep study with ALS.

He may need a PEG, if his appetite is bad. But, having a bad appetite could be due to knowing the diagnosed.
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Once you have settled on the primary neurologist for your father's care, you may want to consider putting your father's depression at the top of the priority list for treatment. Your father is well beyond entitled to be very depressed at this point in time, but the side effects of severe depression now will rob precious time and abilities from him just as surely and just as ruthlessly as ALS will. Just one example: Lose weight because you're too depressed to have an appetite -- your ALS will appear to progress quicker.

Sorry your dad had to join our little fraternity. Try to talk him into coming here to the forum if you can. Lots of good information here, along with plenty of solid virtual shoulders to cry on and to help lift him back up out of the pit he thinks he's in now.

Good luck.
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Raul, I'm so sorry. You're all in my prayers,
Ann
 

Lavender Lady

Distinguished member
Joined
Jul 6, 2010
Messages
441
Reason
PALS
Diagnosis
08/2010
Country
US
State
WA
City
Lake Stevens
Raul, So sorry to hear of your fathers diagnosis. I will lift your family in prayer. Tomorrow I find out my own fate as well. Please tell your dad that even though we do not know him, we are here for him as we are together in this journey.

God bless, Rox
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
It took my husband a bit to get over the initial depression which was intense. It's still there, but no where near as pronounced as it was .
 

pops66now

Active member
Joined
Jul 14, 2010
Messages
71
Reason
PALS
Diagnosis
06/2010
Country
US
State
Missouri
City
Branson
Raul, I know what your father is goig through, and my prayer are with him.
 

amyecpa

Active member
Joined
Apr 17, 2010
Messages
53
Reason
Learn about ALS
Country
US
State
LA
City
West Monroe
Raul, I agree that treating the depression should be at the top of treatment list. I do not know what you and your family are going through, but know that I care and you all will be in my prayers. I hope your dad takes a look at the forum and maybe talks to some of the veterans. You would be hard pressed to find a more compassionate, loving group of people. ALS is a HORRIBLE disease, but it apparently gives some people a perspective and empathy that us regular folks lack. I've been so encouraged and lifted up on this forum. I pray peace for your family.
Love to you,
Amye
 

Raul_Chicago

Member
Joined
Aug 5, 2010
Messages
24
Reason
Loved one DX
Country
US
State
IL
City
Park Ridge
Thank you all SO much for the kind words and advice. Our 2nd opinion appointment (formality) with an ALS Specialist at Northwestern University is set for Thursday. I am hoping that the depression medication works well for him and that he gets his appetite and spirit back & of course, the bipap or something for his breathing issues. I will certainly do my best to get him to take a look at this forum as it has meant a lot to me.

Again, many thanks and my best to you all.
Raul
 
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