Saddended and Scared Daughter over ALS

[Georgia Peach]

Hi
Glad that you have found this forum. My Vietnam Vet is also 64 and we have been on this ALS journey for one year. He used to bicycle 20 miles a day before he was diagnosed and when I first met him before we married he used to run up Stone Mountain. Fast forward to today.

He has use of his left hand and arm. His voice is very soft and he slurs his words when he's tired. He chokes on his food and we're only trying soft foods - scrambled eggs, applesauce, pudding, jello, mashed potatoes. Try to prepare for the future because progression of this disease is a big unknown. No vent, no trach, no peg for my husband.

Good Luck. A strong support system of friends and family is essential. We have a wonderful church family, VA home based Palliative Care and home health care (CNA) plus the 100% rating that came through on Christmas eve. He is very lucky to have you on his side. Keep reading and posting. The information you receive here is more helpful than any doctor that he will see.

 

[1fanatic]

I don't have a response other than my tears right now, but yes, I FEEL LIKE "YOU" all get me! And I love being able to visit and know that I am not alone.

 

[tbuchanan13]

Thank you all again! The support has been wonderful. This morning around 4am EST, he was rushed to the hospital experiencing heart attack like symptoms. They are running tests on him to see what is going on. When I left the hospital, they were admitting him and had told him his heart was in A-Fib....and still was. They were going to see what the cardiologist wants to do. He was having pain in his left arm, sweating, having trouble breathing. Im so scared. Im at work...obviously not concentrating on work!

 

[momap53]

I'm so sorry to hear of your dad's hospitalization. Our thoughts and prayers will be with you guys today.

 

[DeansWife]

tbuchanan - I've been reading your story but not commenting. My heart breaks for you. It's such a terrible thing to watch someone you love wither away. And now, dealing with his heart as well. Just know that my prayers and thoughts are with you and all of us out here. My children are in PA right now attending the funeral of their father who they had no relationship with but not by my or their choice. Long story.... They now have many regrets. I'm so glad that you and your Dad are close. Stay by his side and just love him, you won't be sorry. Keep us posted on how he does.

 

[tbuchanan13]

Thank you Deanswife and momap53! I will keep you all posted. It feels good to be able to write.

 

[LizT]

OMGoodness! I just found your thread right now, and now Im reading that youre dad may have had a heart attack. I am so sorry!
I just wanted to tell you, that you have an awesome head on your shoulders and I think you are heading in the right direction with your dad. The thing that I liked most about your posts, was when you said you still see HIM when you look at him, not the disease. This is so important to hold onto. And it will mean the world to your dad if you are able to continue to treat him the same as always. When it comes to knowing what to say and what not to say to him about these tough situations... well youve just got to feel it out. Have you always been comfortable speaking openly with him? If so- keep it this way. If not- test the waters. Tell him flat out "Look Dad, we are faced with this Beast of a disease, and there are some things that I need to talk to you about". Or something like that. Things change when someone is diagnosed with a terminal illness. Just be open and honest with him. He will appreciate that. But keep in mind, there is something called Emotional Lability- doctors will define it as inappropriate laughing or crying. But from our experience, and those of others- the feelings arent really inappropriate- just easier accessed. So theres a chance that your Dad will need meds for that, as he wont be able to control crying spurts. If you notice this happening- ask him about it. Ask him if its HIM or the disease crying. Some folks get embarrased because of the emotional stuff- so try to reassure him that its ok.
As for the wedding- involve him. Even if you think its "too much" for him- here again, just talk to him. Have him help with some of the decision making. If he cannot walk then, well he can "walk" you down the aisle in his WC. Is that ideal? No. But sometimes its all we've got.
Best of luck to you and Im praying your dad is ok.

 

[tbuchanan13]

Good evening all...well...dad is doing much better. The docs at the VA hospital in Indianapolis are so wonderful! The thought is that is was caused by Rilutek. Im just thanking God it was not a heart attack! He is in great spirits tonight and joking around again. Thank you all for your kind words and support.

 

[kiwisally]

Thanks so much for sharing the good news tbu!

 

[Ms. Pie]

Well that's excellent news! Keep us posted.

 

[momap53]

Wonderful news!

 

[jessielf]

Glad your dad is ok and and is in good spirits! I'm sorry your dad has this horrible disease. My mom got diagnosed in Aug last year. Its so hard to even think about sometimes especially when she gets back from one of her dr apoints and she's getting worse. This last time was a real eye opener cause shes gotten alot worse and is having appoint after appoint for different things. I try not to see her w having ALS and I try real hard not to think of future. Hugs to you!

Jessie

 

[tbuchanan13]

Thank you all! This will probably be my last post on this forum...it definitely is not what I expected. I expected people to be helpful, understanding, caring and considerate. It is one thing to be knowledgeable about a topic/subject and another to have that knowledge and be rude when giving that knowledge to people who are just asking questions. Some of the posts I read...reflect otherwise. While there are good answers being given....they are given in a manner that is rude and some of you feed into it by agreeing with and condoning the behavior. ALS is a horrible disease...a scary horrible disease. My suggestion is to be caring and have COMPASSION toward individuals that are concerned about having this disease, if they do or dont. Don't make them feel stupid for asking questions. Give them the facts...but for goodness sake...quit making people feel like that cannot ask questions. With love and many thanks! Tammi

 

[LizT]

Tammi-
Its too bad you feel that way. When I joined this forum, I THOUGHT i felt the same way about Trfogey ( its apparent that is who you are speaking of). Notice i said THOUGHT.
You joined a public forum and wanted advice and help. You got that. You dont really have the right to tell ppl how to show they care. If you'd just relaxed a bit, like I had to, you wouldve seen that TR. is one hell of a guy. Just because he doesnt coddle ppl doesnt mean he isnt supportive. That isnt his way. What is most important to him is to get ACCURATE info on here, so when others go searching, the info they find will be correct. And if you were around longer, you would see how very crucial that is.
I dont like the fact that you joined this group and attacked one of our senior members. I dont like the fact that lots of folks other than TR gave you awesome advice and support, but you throw all of us into this little group of folks who dont give you what you want. All because you disagree with ONE person?
Its too bad you feel this way, as you WILL miss out on alot here. But in all reality, if youre entering our forum with so many expectations of others before youve even been here long enough to really form an opinion, well.... I cant say I hate to see you go.
Best of luck with your Dad.

 

[kiwisally]

tbuc, I say this with nothing but respect and in an effort to help you personally. I see you are on line and reading after your "last" post so hope you will see this. Regardless of how you feel about Trfogery, justified or not, you did receive much support from many people. Life is ruff but you can't let one perceived offence control and colour what is otherwise overwhelming support. My advice to you is to TOUGHEN UP girl, stop throwing your toys out of the cot and grow up a bit.