Status
Not open for further replies.

tbuchanan13

Member
Joined
Feb 29, 2012
Messages
25
Reason
Loved one DX
Country
US
State
Indiana
City
Brownsburg
This is my first post. My dad was diagnosed with ALS last year. We first starting noticing that something was not quite right when he was losing he awesome muscle tone in his legs. We have always said that my calf muscles are just like my dad's...nice, toned...muscular. Now...his are non-existant! What kind of disease is this? Why does it have to happen to him? Its very scary to see him decline so fast...to see your once strong dad...wither away to hardly nothing..barely able to walk, falling...having to lift his water glass with two hands...not able to button his buttons.....not able to do yard work...speech is starting to go, becoming more slurred each time I speak with him. The choking is scary too! Talking about hoyer lifts and wheelchairs? Seriously? He is a Vetenam Vet! Told this is Service Related ALS! What did we do to our people? What are we doing to our people? Im getting married in August of this year... what if he cannot walk at all? What if he cannot talk at all? What if he is on a breathing machine at that time? Worse yet...what if he dies? DAMN this Disease? Im so mad at it...I give it to God to take away my dislike for this disease....I do not understand why, but only he knows the reasons. Perhaps....if for only the sole purpose of bringing my dad to know him! I dont know and will never know for now. Its like I do not know what to think about it anymore? How to feel? I still joke with him and love on him like he does not have it....but its killing me inside to see him go through this. I really dislike the fact that you remain cognative...it seems it would be so much easier if you didnt know what was going on? Today my heart is hurting and perhaps if I can just write...get it out...YELL! I know my mom is having a hard time with all of this, but she is trying to be so strong....for everyone! I know when I get married...he will be there...if we have to carry him...or he is there in spirit! Im sorry if this seems all over the place...my mind is racing. Thank you for reading!
 
Re: Saddend/Scared Daughter

I am so sorry...it sounds like you are going through the typical scale of denial, aggression, sadness, bargaining, and trying to accept...
But at least know, here on the forum you will find support in your times of need.

You might be interested in the following forums: CALS and PALS. PALS is People with ALS and you can find some good information there on how to help your father go about living with the disease. Also, the Caregivers for ALS is more geared towards you and your family members to rant out, or find good tips as well. There is also a Tips, Gadgets section as well you might find helpful in buying equipment for him when he needs it. Look around when you can and you will find the members and resources available to be quite helpful to you.

Since he was diagnosed last year, the question we would ask you is if everything is in place or getting to be in place. You said he was a VA. There are special benefits for VA that have service related ALS. Check into your .nearest VA Hospital if you have not already.

Also, one of the main and biggest things of this disease is to take one day at a time. You can drive yourself crazy with the 'what if' life and 'what is to come'. Just be glad for whatever strength he has for the day, and plan accordingly.

Lastly, we know, this is a horrible disease...it takes way too many of us, and until a cure is brought forth, we can only hope and wait that our PALS and ourselves will bring more awareness to the public so that a cure is found..

Again, sorry for your father's diagnosis. I hope you find the support here you need.
 
Re: Saddend/Scared Daughter

Thank you very much for the information! The VA is being very helpful in the department of supplying him with what is needed for daily living. They have the hoyer lift...he will be getting his chair soon....he has a walker...leg braces....going to all sorts of therapies. One thing he does not have yet...is 100% benefits from the VA....we will all feel a little better when we don't have that to worry about. I know he worries about that daily. He is at 90% benefits and fighting for that last 10%...so mom will be taken care of. At this point that is all he is worried about! You are right....and normally and typically...that is my motto...live one day at a time. You nor I...we are not promised tomorrow. And You are very right with "driving myself crazy thinking about the what if's and what is to come"....I need to stop that. One day at a time....one step at a time.
 
Re: Saddend/Scared Daughter

I'm very sorry your dad. You sound like a wonderful daughter! Hang in there. We will be here for you...
 
Re: Saddend/Scared Daughter

Sorry you're all going through this. Yasmin
 
Re: Saddend/Scared Daughter

Take things one day at a time. Try to stay positive and strong for him. That will help him be strong too. I'm so sorry you all have to go through all this. Feel free to vent or share here. There are lots of knowledgable and helpful loving people here.
 
Re: Saddend/Scared Daughter

You are all so wonderful and very helpful. I was just really having an emotional day with this...dad has been on my mind. He only lives 2 hours away....but that is still not close enough. They are actually in town helping my brother with their new baby. I talk to my parents daily....I just found out from my mom that dad was up all night long having a hard time breathing. She said that he attempted to sit up and sleep. She said that if it happens again tonight, she will take him to the VA Hospital here in Indianapolis. I had a feeling something was going on. :( She said that he is trying to nap and rest....I pray that he can rest a little today. I just want him to be comfortable. Its so scary. I cannot imagine not being able to breathe.
 
Re: Saddend/Scared Daughter

ALS is a mystery disease, that even neurologists have a hard time diagnosing. It has no known cause. Most people with it are not and have not been in military service. One thing is for certain, it is always fatal. Some people live a long time with it. Others, especially if there speech goes early, seem to die more quickly. You often hear of someone passing away after 4 or 6 months, others after years. I have seen marked changes over the last year in my pals. Her legs and arms are skin and bone and she is a quadriplegic. I know it is very disheartening to you and your mother. ALS is a cruel disease simply because you do not know what is coming next. Go ahead and prepare for the worst. Get a hospital bed and brush up on changing diapers. If the VA offers hospice, have them come out and help your mother take care of him. They do not stay long, but at lease they keep the bed and patient clean. Chocking is a big problem. Learn what other people on this site do to prepare foods that will go down. There are thickening products that you can add to most anything to help get food down. Most of all, do not be repulsed by ALS and its outward signs. Your Dad is the same on the inside as he always was and needs your love.
 
Re: Saddend/Scared Daughter

Does your dad use a BiPAP? If he's having difficulty breathing, he should probably use one. It'll make a big difference for him and your mum!
 
Re: Saddend/Scared Daughter

Thank you for your post! Its definitely a mystery! Thank you for basically saying its ok to prepare for the worst...that is where I am. Everyone seems to want to overlook that. I know we all will eventually die...but watching him go this way is not the way I was expecting it. He will be 65 in July....it just seems so young! Im just not ready for him to go....but preparing for him to leave...if that makes any sense at all. He has started choking on his food and drink....I know they have started seeing a dietitian for this. He is my dad....I will NEVER be repulsed by this disease....I dislike the disease...not him....I dislike what it is doing to him. When I look at him....I still see him! Its actually harder to talk to him on the phone then it is to see him in person....I think because you focus on the voice when on the phone....that is when I really hear the slur in his speech. I dont notice it as much when Im face to face with him. This has been very therapeutic for me today....just hearing from people with the same stories....who know the same symptoms...know where Im coming from...the feeling im feeling. People that do not have someone with ALS in there life...don't know what its like. Many people come in contact with someone who has/had cancer...many people can relate....You just dont find to many that say...Oh, yeah....so and so I know had ALS...I know what you are going through. This forum has been a blessing today.
 
Re: Saddend/Scared Daughter

Cervus - This morning was the first I heard that he was having trouble breathing. I dont even know what a BiPap is? It just sounds scary!
 
Re: Saddend/Scared Daughter

Thanks for posting. My Dad has been just diagnosed, but the diagnosis was probably late and he is declining fairly quickly. I can totally relate to everything you are saying. I wish I had some words of wisdom, but I don't. I'm glad you found this forum. There are many wonderful people on this forum who selflessly listen and offer heartfelt encouragement. Please continue to post when you feel the need to vent, have a question (there are no dumb ones), or just want to chat (find the 'tea room'). Sending good thoughts your way!
 
Re: Saddend/Scared Daughter

TBuc,
It's been written countless times on this forum so what is one more.... so sorry you have cause to be here.
Okay, now the 'stuff':
Concerning the VA, as of 19 Jan 2012 ALS is 100% disbility from diagnosis. Have your Dad's VSO or other rep make that change for him. This certainly isn't what we vets expected at retirement, the 'golden years', but we move on.

I was also diagnosed last year and my oldest daughter is getting married in May. I hope to be able to walk her down the aisle and say the magic words "Her mother and I". I don't have any false hope of doing the same for my youngest 2 daughters or my son. Make whatever plans you need to so your Dad can be there and be involved. I have already recorded the magic words, as well as what I think I would have said in a toast to the happy couple. Digital voice recorders are cheap and easy to use. I'm sure my wife and kids won't mind my slurring some words!

Continue to "joke with him and love on him like he does not have it". I know that is how I want my girls to be around me. You have to find a balance between letting ALS be the centerpiece of your interactions and avoiding it altogether.

Encourage your mom to let down with you; being "strong" for too long without some release is not healthy. For either of you.

Keep praying; He listens even when we aren't sure how to speak to Him. And be sure I am going to ask him about this ALS business, just hopefully not too soon!
 
Re: Saddend/Scared Daughter

Thank you Jeff! Now lies the question...how do I talk to him about this? Do I talk to my mom? I don't know that I can or want to talk to my dad about it. I honestly dont know that I can talk to him about it. Would he want to record the " Her mother and I"? Would he want to record a toast? Do we do it just in case? The disease progression has been fast...and I do think that by August he may not be able to talk. Its such a bitter sweet thing....I have been married once before...but the man I am marrying this August is my true soul mate...he is like no other. I want him to be involved as much as possible...but just how do I talk about it? I would have NO problem with him slurring every single word he said...as long as he was still there with me. :)

He has someone working on getting the 100% from the VA...hopefully that will go through very soon....and be behind him.

I pray for him daily! I will pray for you...all of you! And congrats on your oldest getting married....very exciting! (And perhaps a little scary! :) )
 
Re: Saddend/Scared Daughter

tbuc, sometimes when something is just too hard to talk one on one iit helps to break the ice and get the conversation going by writing it down in a letter. That way you can get what you want to say perfect and the other person can process and deal with the difficult subject privately before talking about it with you in person. Just a thought, if it is too hard to talk with your dad about this right now face to face. At the end of the day I feel sure your Dad wants to be involved in your wedding to the fullest extent he is possible and will do whatever he can to do so. All the best to you.
 
Status
Not open for further replies.
Back
Top