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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
 
I am sorry to hear of the diagnosis. I hope he has many years yet!
 
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.
 
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.
 
Raul, I'm so sorry. You're all in my prayers,
Ann
 
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
 
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 .
 
Raul, I know what your father is goig through, and my prayer are with him.
 
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
 
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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