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daddygirlmel

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Hi everyone, my name is Melissa. I am 31 yrs old. My dad has been sick for about 6 years and he has not told me anything about it. He thinks he is protecting his little girl. Recently he has gone down hill drastically. I finally pounded enough family members to finally find out what it is...ALS. I do not know what to expect or look for with the advanced progression of this disease. All I know is he is on oxycottin, morphine and lyrica and he said the only thing left is the morphine drip. He can not sleep at night because the pain is so bad. He is selling things which tells me it is getting close to time. He has been having swallowing problems for about 8 months. He hides his meds knowing I am internet savvy and will discover things. My dad is my world and I understand why he chose not to tell me anything. But it is more devistating NOT KNOWING! He had his own construction company and always had a buff body but now when I hug him it is like a 90 yrs old man. Skin and bones. I have come to grips with his illness but not knowing how much time he has and what warning signs to look for is killing me. I am a daddy's girl, true to the heart but I need to know what to expect. What the warning signs are. How to help. What I can do to comfort him. How do I let him know his little girl and grand babies will be ok without him on this earth. If anyone has any info or suggestions please email me at [email protected] with ALS in the subject line. I do NOT care if I get 5000 emails a day... I need to know how I can help my dad, what to expect and look for. I do not know how to navigate around this website, I just found it tonight. So please send me email at the address shown above.

Also, if anyone has this disease and has not told anyone about it, please listen! You might think you are doing the right thing trying to protect your loved ones... but all it does is cause confusion and more pain.

Thanks to anyone who can help me with this. May God bless anyone with this disease and their families.

Mel
 

nsmith555

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Feb 27, 2007
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Loved one DX
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03/2007
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OK
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Guthrie
Mel,
I am very sorry to hear about your dad.
My mother was diagnosed about 6 weeks ago, and so I can relate to where you are right now.
When we suspected what she had was ALS, I set about researching everything I could about the disease and then made it a priority to attend every doctor's visit with my mom. From there, I have made it a point to nag her incessantly about getting and/or doing things to make life easier, such as getting a bi-pap (breathing assist machine) and a feeding tube.

I would recommend that you do as much research as you can - becoming more educated can often give you more piece of mind, but moderate yourself so you don't become too overwhelmed. Talk with other family members and spend as much time with your dad as you can.

Feel free to ask questions here as these people are all very kind and want to help!
God bless you,
Nicki
 

Jamiet

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Carencro
I read your post last night and are sorry you have to go thru this. It's even harder when your the victim. Your dad is full of emotions right now, probably, anger and alot of other things. He sounds like a great man, whom always took care of himself and his little girl.

I would suggest that you sit down with him, tell him your feelings, mabye tell him, it's your turn to return what's he's done for you, giving you life and happyness.

This is a horrible disease, it turns lives and families upside down.

We're here to support you......ask any questions you need.

You are going ot the right place, here and your local ALS assn. Also, you should see if you can get him and go with him to the ALS Clinic, they will help you.

Regards,

Jamie
 

brooksea

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HM
Mel-

Please go to alsa.org to find the local chapter of ALS in your state. They can send you manuals and booklets regarding this disease. They may also be able to meet with you to discuss your situation and give you counseling. They will also be able to point you to a support group, although you may want to digest all the info they provide before going to a support group meeting.

Everyone that gets this disease progresses at a different rate, so there is no way to predict what may happen next in a person.

I know this is devastating to you and your family. Please check back in with this forum, as everyone here can provide support even if it is in cyberspace. I have found it to be so.

The shock and anger will eventually dissipate into depression and then a coping mode. Please seek help for yourself so that you will be able to deal effectively with your daddy.

-cj
 

CindyM

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Hi Mel- I saw your post this morning and was at a loss for words. This disease affects the whole family and sometimes there is no way to tell someone how sorry I am for what they are going through. I thought about you all day, and fortunately some of the great folks on this site found the words to offer you support and a little direction. Glad you found us! regards, Cindy
 

daddygirlmel

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Apr 25, 2007
Messages
2
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Loved one DX
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US
State
ohio
City
fairfield
i am gettin no where n i feel lost

thanks to anyone who has given me suggestions and info. is the bipap breathing machine kinda like what the give people with sleep apnia? i know he has a breathing machine to wear at night but he refuses to do it. he says it is not comfortable, which i understand. i have been trying for a few years to get it out of my dad but all he tells me it is neuropathy and they dont know where it comes from. he has been to the mayo clinic, the cleveland clinic.. always returning with a sad face saying there is nothing they can do about it. i also know he goes for some kind of shots weekly, but he wont tell me anything. any idea of what that could be? i also seen a medication of his that had something to do with the heart beating. i am clueless about what any of this does or how this disease can affect people. thats why i turned here. i just know my dad looked at me and said sis i think this is gonna kill me. im just so confused and dont know where to go with this. i talk to my dad at least twice a day and usually see him 3-4 times a week. he is so worried that i am not gonna handle it well so he hides most of it from me. he has called me a few times in the middle of the night beggin me to come up to his house, that he thought he was dying. i wish i knew the time frame he was given so i could make sure i was by his side when the time comes. he wants to die alone. but i want to be with him. im just so confused...:confused:
 

Al

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Joined
May 25, 2004
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7,960
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PALS
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10/2003
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CA
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On
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Hi Mel. He might be getting vitamin B shots. Some people get them hoping to slow the effects of ALS. A Bipap machine forces a set amount of air into your lungs and has another setting that lets you exhale. A CPAP machine is used for sleep apnea and just pushes a constant air pressure into your nose and or mouth to keep the airway open during sleep. That's the simple version of the difference. If your dad will talk about it ask him to try the machine in the daytime sitting up or laying down. It helps to get used to in the daytime rather than when trying to get to sleep. The masks can make you claustrophobic. Maybe another mask would work better. As for dying alone it his choice but ask him would he rather come home and find you dead on the floor or hold your hand and tell you he loved you if the positions were reversed. He maybe just needs to see another viewpoint.
AL.
 

CindyM

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Hi Mel-another thought: if he can't share with you what is happening to him then your best bet might be to learn all about it on your own. This might have several simultaneous effects. First, you might begin to feel more comfortable and if this happens he might feel more free to tell you what is happening. Second, as you gain knowlege he might be able to see you as an ally in his fight. The way I see it, learning more can only help both you and your dad cope with what is going on. Cindy
 
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