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texgirl

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cypress
My eyes are swollen from crying off and on since 2:00 this afternoon when my dad came over to tell me the news that his issues are caused by ALS and not his back problems.

I am absolutely devastated, he is 66 and has been having issues since summer time.. leg issues that have progressed to where he walks with two canes and has fallen 13 times he said.

We live in the Houston area and from what I can tell, there is no ALS chapter here, only in Dallas area.

I am so overwhelmed. The other thing that makes this even harder to deal with is my mom suffered a brain injury back in 2003 and my dad takes care of her at home along with caregivers. He also has his dad who is 86 there who has cancer and is in very bad health. Now this.. seems unimaginable... oh and my 29 year old brother died back in 2009... just writing this it seems unbearable that this poor wonderful angel of a man now has this disease. He is a strong Christian and I can't help but be bitter and angry right at you know who for my daddy. I have a 5 year old son who will lose his grandpa way sooner than I had imagined.. his dad is 86 for goodness sakes.. I had high hopes.

I probably sound like a half crazy.. I feel half crazy.. I am in utter shock and disbelief.

Thanks for listening...
 
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bigmark1954

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Joined
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997
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UT
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taylorsville
Sorry to hear about your Dad.....this disease is everything you fear. Thankfully, your Dad has you and your son to comfort him and help out.
Use this forum to learn about MND's......your knowledge will help you as his condition unfolds. It sounds like he is a strong individual, which will help out with the changes in his future life.
 

texgirl

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Thank you for responding... he is strong.. and I guess so am I... so we will just keep moving... I am thankful I found this site and hope to learn everything I can to help him. Thanks so much, KIM
 

zoohouse

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Messages
958
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CALS
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CA
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B.C.
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I am so sorry about to hear that you will be joining our ranks. The next few months are going to be absolutely overwhelming for you, mostly because you have to wrap your head around it, but it keeps changing so you never seem to catch your breath. You have every right to be angry at God and he can take it. He knows what you are feeling, and I still don't know why he has chosen to allow these things, but I will continue to trust and praise him. My husband is one of the most amazing men I have ever met, and even with this disease he smiles more than most. So go ahead and cry, yell, scream, mourn the loss of SOME of your dreams, and then get down to business. You already have had a lot to deal with in your life, as have many on this site, and it amazes me how they keep standing figuratively for some, so much so that they become columns of strength for others. Welcome, we are here to listen, and support you, and one day you will do the same for someone else. God bless you, and I will be praying for you and your family.

Paulette
 

Nikki J

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Kim I am so very sorry. I hope you have support for yourself. Yes you are in shock and grief right now. You need time to process it but it sounds like you,your dad and whatever other family there is have some hard decisions that need to be made quickly. Your dad can not of course continue as a caretaker. It sounds like he is very close to needing one for himself You do not say what kind of care your mom and grandfather need. If it is only supervision and companionship you may have a little longer to figure it out but the sooner it is addressed the better. I am sure your dad is thinking about this too. He sounds like a man who will try to give until he absolutely can not do it but it is better to act before it is an emergency.

There is a link on the main page of this site. The page that you use to access the forums. Bottom left there are links click on support and you can search for information on Houston resources

Again I am very sorry for your situation
 

FSHolbrook

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Messages
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09/2013
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Fargo
I am really sorry to hear that your Dad has this awful disease. You will find some very helpful information on this forum. We cried for about a week after my diagnosis but, then began learning about ALS and decided that the way to face it was with a positive attitude. Family is the most important thing in my book that that I have. I have found that ALS support groups are another good source of information and at least in our group much humor.
There is probably an ALS.org. office in Houston they have many helpful thing to offer too.

Rick
 

affected

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Welcome to the place no one wants to be Kim, we understand all those feelings. I have found the support here to be so helpful, you have come to the best place.
 

MaxEidswick

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08/2013
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Pinehurst
Hi, Kim --

>We live in the Houston area and from what I can tell, there is no ALS chapter here, only in Dallas area

if you are able, contact Dr. Appell's clinic down in Houston Methodist (I can get you a number or email if you need). He runs a quarterly clinic where you meet 20-30 other ALS families, all the DR's and therapists in one place in one day. They also offer placement in drug trials, etc.

also there is and MDA group meeting this month which you might like. We can scan the flyer and post it if you want.



We are down near Louetta and 249.

Kind regards,

Max
 

Mathew

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I am so sorry for you Kim. Hang in there and don't forget about yourself! Your MD I'm sure would be more than happy to help you if you need it. Don't let yourself get too down! I have gone back and forth between ALS and MMN diagnosed. I was already on anti deppresents so I think I handled it a lot better than my wife, who doesn't take so much as an aspirin. I noticed right away she went from an early riser (4-5 am) to sleeping late on weekends in the first few weeks. Our family dr. said whenever she needs help not to hesitate to ask . Depression is a nasty beast! But just want to tell you , this is the right place for support. I'm still checking in here 2-3 times a day to read experiences and get comforting words. Espicially people who have responded to you today, Paulette , Tillie , max and others. My thoughts are with you!
Mathew.
 

texgirl

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Joined
Feb 11, 2014
Messages
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cypress
Thanks to all of you. I am on my phone so can't respond properly but I will tomorrow. Thank you all very much.
 

affected

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Kim, it sounds odd and almost cliche but it is true that the first month is the worst, so far as the emotional shock and grief.

After a time we find a way to adapt to the new situation and move forward. It still hurts, it is still shocking and I still find grief is there, but it isn't quite like that overwhelming tidal wave feeling at the beginning.

That's why coming here and talking is important, we understand!

It has been a true solid silver lining in the cloud for me to have made the friends I am making here and be so understood.
 

texgirl

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cypress
Max, Dr. Appell is out of network for my dad, but he is still going to contact them regarding an appointment. So, thank you very much for that information. Right now he has an appointment at Dr. Aziz Shaibani which is the last neuro he went to with the diagnosis. Have you ever heard of him?

As far as my dad being caretaker.. luckily he has 3 live in care givers now that help with my mom and grandpa.... so I think that is ok for now... but more may need to be hired. I am already thinking of down the road moving him into my house.

As far as me.. I am already on an antidepressant... since 2010 after my brother died... may need to up the dose!

I am trying to talk my dad into doing fun things with me and my son while we can, like now. He has missed out on so much due to my mom's situation but he is depressed I think and doesn't want to.

His brother and his family are going on a cruise in June and have invited to go and he is considering it... any thoughts on if that is a good idea or not?

Of course being newly diagnosed my first thoughts are to get him into some trials, perferably stem cell, but I would assume the chances would be slim for him to be accepted? As far as I can tell, there are none in Houston... and they want you to be local.

Thank you so much for your support. I am so glad I found this site.

One last quick question... can my original post be edited? I need to change something in there... is that possible?

Thanks in advance for all of your help. KIM
 

Nikki J

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Joined
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Kim I am much relieved to hear there are caregivers in place. That is awesome. As you say the situation may need adjustment in time but at least the basic structure is there. Try to stay in touch with the caregivers to have a sense of what is needed.
Cruise in June depends on his progression rate. He may by then need to be transferred,help with hygiene dressing feeding...or not.
I do not think you can edit at this point. I think the ability to edit lasts a short time so you can immediately fix typos. If you need something deleted and can somehow convey that I can do it for you. Unfortunately you can not yet pm as you need more posts.
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
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b.c.
City
magna bay
Kim, I am so sorry about your dad! It sounds like your cup runneth over and I would recommend you put a large bowl under it. Take care of you for us.
Hugs
Linda
 

MaxEidswick

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Joined
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Messages
5,567
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PALS
Diagnosis
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>Max, Dr. Appell is out of network for my dad, but he is still going to contact them regarding an appointment. So, thank you very much for that information. Right now he has an appointment at Dr. Aziz Shaibani which is the last neuro he went to with the diagnosis. Have you ever heard of him?

No, I have not heard of him. I did go to Amy Nash (now Amy Howe, I think) here in Tomball. She is ALS knowledgeable, as she studied under Dr. Appell.
 
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