question for those with ALS

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scotch0917

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My dad was just diagnosed with ALS. His only symptoms so far are the speech/swallowing problems. Due to the severity of the diagnosis, I have no idea how to address it with him or any idea of ways that I could help. My question is, when you were diagnosed were there things that people did that you really appreciated or helped you out? Also, were there things that people did/said that you didn't appreciate?

Any input would be helpful, i'm having a really hard time knowing what to do or say. Thanks.
 

Al

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Hi Scotch. Welcome to the forum. Has your dad registered with the ALSA and could I ask how old he is? Just a hand on the arm or shoulder means a lot. Are you a son or daughter? A hug means a lot. I found the biggest thing that cheesed me off was my family's denial. They just couldn't accept the fact and some still don't 3 years later that this is a bad bad terminal illness. I don't expect tears and gnashing of teeth but don't keep saying there is nothing wrong and you'll be fine. That makes you mad. Take your dad and do something real soon that you have always talked about doing but never got around to doing. A football or hockey game or skydiving or just a nice dinner while he can still appreciate a good steak or whatever. Just spending more time with your loved ones makes it a better day. That's my take on it for today. Others will no doubt give you theirs. AL.
 

scotch0917

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I'm a daughter and to tell you the truth, I'm not sure how old my dad is. 60ish. Thanks for your input. I'm scared to face him because I feel like I'll ball like a baby and that won't make him feel any better.
 

Al

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Well there will be quite a few tears shed over the next little while so just be yourself. At his age he knows you care and I don't think a few tears will bother him. He'll probably join you. I know I did when I first saw my kids after diagnosis. You get over it and move on. One day at a time. AL.
 

Pearl

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I'm a CALS (caregiver/friend of ALS patient) - my friend was also fairlyl recently diagnoised (Aug.) with bulbar onset. At first, I didn't know what to do either but I am close to the family and I have witnessed their reactions over the last few months. What I can tell you is that it has been very hurtful to them when people have avoided the topic or ignored his illness. If you can imagine, even their PASTOR has dropped the ball on this one (promised to call, visit and never has). Some family members (although admittedly not close) have ignored it, also very hurtful.

This family was/is devestated and to ignor their grief has been more hurtful than to bumble through a few words of compassion or an awkward visit. They have most appreciated cards/ notes (although at first they were hard to read and some were left unopened for a few weeks- then slowly they were all read and have been kept). Some have sent food (also apprecaited). Some sent practical gifts (filing boxes to help sort through all the incoming doctor bills, ALS information, legal stuff) - appreciated.

One thing I sent them recently was a very small dry ease board - I think it was a difficult gift to receive (because it was a reminder of how he is loosing his ability to speak) , but it was used almost immediately (he has trouble speaking for long periods and sometimes can't finish a thought. With the board, he can continue his conversation).

Bottom line, it is important not to remain silent. Show up, take something, send notes, check on him, offer to help with appointments, shopping, etc.....
 

anne

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Hi Scotch: Welcome to the forum. I am sorry about your father's recent diagnosis. Just want to let you know that you are not alone. When first diagnosed it is extremly difficult. I felt like my mother was given a death sentence. We take one day at a time. I treasure every moment I am able to spend with her. My brother has moved back home so she would not be alone at night. This has been very benefical for her. She feels like she has a purpose. Eventhough you are travelling a difficult road enjoy and treasure every moment you have with your dad. God Bless. Anne
 
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