Dad has ALS

[Artoo]

Hi everyone...I'm pretty new to the board here, but I'm a HUGE Disney nut (My husband-to-be and I will be going to WDW on our honeymoon on October 1st).
I was wondering if any of you out there have gone through or are going through ALS, or if you have any loved ones who have it. I just found out a week ago that my dad (he's not even 61 yet) has it. I'm really scared and upset, and I'm just trying to find other people out there to talk to about it! I registered on the board and browsed around, pleasantly suprised to find this "Coping and Compassion" forum. So, I thought I would try and see if there was anyone out there who I could talk to about this.

 

[barb/nl]

Hi,

I have experienced ALS through my husband and am willing to listen to your concerns and tell you anything I know that might be helpful to you and your dad. A very good place to get a lot of excellent input combined with support and compassion is in the Yahoo Group "Living with ALS"--check it out and let me know what you think!!

-Barb

 

[Artoo]

Thanks so much. It's good to know that there are people out there who will understand (organizations, too!). My family has always been healthy and this has been just such a shock to all of us.

 

[barb/nl]

Hi,

If you have any questions, feel free to ask them? By the way, are you sure of the diagnosis? Did he get it at an ALS Center? What are his symptoms? Did you get a chance to take a look at "Living with ALS"?

-Barb

 

[Artoo]

My dad saw a doctor who specializes in ALS at a nearby hospital. They did a whole bunch of tests on him (blood tests, a "muscle biopsy", spinal tap)...they have ruled out everything else and have pretty much told us it's ALS. He had been walking with a limp for about a year. We thought it was due to a very minor stroke he had, a little over a year ago. It turns out it's more than likely due to this ALS. Plus, now my dad is walking worse than before

 

[barb/nl]

It sounds like your dad has been getting the right screening. Did he have an EMG, too? Since ALS is actually diagnosed by trying to eliminate everything else, there is always the possibility of error. More than that, there are so many different types and rates of progression within ALS that what you read about ALS can turn out not to apply. The people who seem to do the best are those who actively reach out to the ALS community and find out/contribute as much as they can. They are generally very spiritual and positive-thinking. Some people progress very, very slowly and live for a long time. The positive thinking and joy in the moment helps whether the progression is slow or fast and there is a great deal of very helpful technology available for every stage. So don't be scared--take each day as it comes, enjoy it to the maximum and encourage your dad to do the same! And who knows--there is a lot of ALS research being done and a cure may come at any time!!

-Barb

 

[Artoo]

Thanks for all the help.
I believe my dad had the test you mentioned done just recently...I guess it was the last one done, just so they were sure that is what it could be. I've been doing some research about it on the web and when I was at my parents' house for Father's Day, my dad had a whole mess of books about ALS sitting on his table.
I know that every case of ALS is different in terms of how fast it progresses and how bad it could be. When I first started reading about it, I freaked out because it said that the person was expected to live for another 3-5 year (of course, this is Wikipedia). Then, my fiancee reminded me about Stephen Hawking and how he was diagnosed YEARS ago and is still alive and writing books and giving lectures. That made me feel better.

 

[catsrule]

Hi! My nephew has ALS, he is only 35. He is right now getting a tube put in his throad to help him breath and eat. He has had it since Feb 06. He has 3 little ones and won't see them grow up. It is a stinky disease and can strike anyone. There is no history of this on either side of his family. Why do some get it? Who knows?

 

[catsrule]

Also, the person with ALS must decide if they want to live like Stephen Hawking. I'm sorry to say this, but most don't.

I am very sorry about your Dad. Prayers too.

 

[onesadduck]

I'm so sorry about your dad. I wish I had some positive news for you, unfortunately, my only experience with ALS was the father of my friend, who died only six months after diagnosis. I truly hope things go much better for your father. Sending good thoughts your way.

-Alisa

 

[Mackey Mouse]

Hugs to you and prayers for your Dad... Sounds like you got some help here from our very generous giving posters and hopefully you can continue to get your questions answered by these posters...

 

[catsrule]

My nephew now lives in a handcapped apartment. Your Dad will eventually need to make his house handicapped accessible. Also there are many support groups you can join. My nephew is also on prozac now. There are also daycare places and physical therapy that he will need.

 

[pha1226]

No real advice here just hugs and prayers. My dad died 2 years after his ALS diagnosis. It started with a foot drop and trouble walking along with weakness in his hands and when he died, he was bedridden on a ventilator with a feeding tube. He was 55 when he died (and I was 7 months pregnant with my first daughter). I hope you find support here and through the suggestions other have made. I wish I had something positive to say to help you. It is a horrible disease and sadly, there is no getting better.

 

[huckster]

hello,
sorry to hear about your father. My mom had ALS nasty thing it is.. she found out when she was 57 died at 59..God rest her soul. many go for a long time, my mom slipped fast she lost her abilty to walk and talk first, she could write for a while , then she had a glass stand with letters that we would watch her eyes spell things out.she had a feeding tube within the first year , any questions i would be glad to try and help it was 24 years ago, my heart goes out to you and family.

 

[catsrule]

I'm sorry to hear that your Mom had this too, huskster. It is very hard watching my young and once vibrant nephew losing his ability to walk and talk.

There is also walk to d'feet ALS. It is a walk for ALS every year. They have one in our area, they may have one in your area also.

 

[Cruella 66]

Wow...can't believe I found this thread. My mom was just diagnosed with ALS in April. She's determined to be as independent for as long as possible but is having speech difficulty, swallowing difficulty and is getting weaker and more tired by the day per my sister. It's very difficult too as our grandfather also died of the disease in 1985 when he was 54. My mom is currently 57. I feel like I'm staring my future in the face as it's probably FALS and I, my siblings and children have a 50/50 chance of getting it. I'm going to hook up with the local ALS support group when I finish with our Disney trip. I'm also taking Prozac, trying to stay positive and accepting that my future is up to a higher power. My heart really goes out to the young man, 35, with the disease. Cindy

 

[bethifoody]

Hi. I'm very sorry to hear of all your loved ones' diagnoses. My mom was diagnosed with ALS in April of this year - a very scary fact when you consider that her father died of it over 20 years ago. She's doing ok so far, I guess, although I can see changes every time I see her. She's still walking, driving & going to work. Her speech has been slurred for many months now, and she's beginning to have trouble walking. She is being seen at a local ALS clinic through the Univ. of Michigan, so I've no doubt that she's receiving the best care possible.

Someone mentioned the Walk to d'Feet ALS; I'm walking this year in a local Walk (Howell), and my sister will be walking in the Walk in her area. I feel like it's the least I can do.

Sending to everyone. I want to thank my sister, Cruella66, for sending me the link to this thread.

Thanks for posting, everyone. It's good to know we're not alone!

Beth in MI,
CR, 8/18-23

 

[jacksonsmom]

Wow I am surprised to have found this thread. I never come on this board, didn't really know about it.

First I am very sorry to hear all of those that are dealing with ALS. It really is a nasty disease. I only pray one day someone finds a cure!

My dad currently is battling ALS. He started having some muscle weakness in his right hand in August 2005. By January of 2006 the doctors diagnosed him with ALS

My dad is only 50 yrs old. Currently he is doing "OK". He just recently took a trip of a lifetime to Alaska. He really had the time of his life there. I am so happy for him that he was able to go there.

My dad can still walk but recently he is expereincing weakness in his right leg. His right hand/arm is pretty much useless. His left one has lost a lot of muscle too. In fact my DH was just over at his house this weekend changing the door handles because my dad can not turn a doorknob anymore. He now has doorhandles that you push down and then push the door out (kind of hard to explain). Since the beginning he has lost a total of around 40 pounds. He is very thin. His speech is very affected, he slurs heavily. He recently went to the Courage Center here and he will be getting a machine that he can talk through and will allows others to hopefully understand him better.
He has a hard time swallowing and coughs/chokes when he eats.

It is a VERY frustrating disease for all those invovled. My dad can not bathe himself or even help himself when he uses the tiolet

I will say although the future is bleak my dad is living life as much as he can. He CAN still walk and although it is a struggle at times, he CAN still talk! We don't know how long he will be able to walk on his own but we are thankful for whatever we get.

One thing I want to say is ALS is a HORRIBLE disease. As family supporters and caregivers we HAVE to support the person with the disease wishes! My dad will NOT go on a breathing tube. Of course knowing that I know his life may not last as long then if he did have a breathing tube But those around him have to support HIS decision. We are not the ones living with the diease.
My dad's doctors have recommended a feeding tube but again my dad just is not ready for that. He may never be ready. Again us supporters have to support his decision, no matter how hard it may be.

It has been about 1 1/2 since the official diagnosis, 2 years since the first symptom. My dad has progressed quite a bit since then. I don't know what the next year or so will bring but one thing we learned about this disease is just one day at a time and love one another.

Again I am sorry to hear those that are battling this disease.

 

[Cruella 66]

I am sorry to hear of everyone's encounter with ALS but I totally agree that it is the person suffering with disease that needs to call the shots and the loved ones that need to support his/her decisions; regardless of their own personal beliefs. I, unfortunately, am in Virginia and the rest of my family in Michigan. I don't see the day to day changes, falls, swelling, lack of eating, etc. Being a RN I can tell everyone the "right thing" to do according to my training but ultimately, it's up to my parents as to what they do. I can't get them to do it any more than if I were there, you know? So, honor them, put your faith in a higher power, and try to smile. Hugs to all, Cindy

 

[catsrule]

Wow. I haven't been back to this thread in awhile.
This is a horrible, fatal disease and I wish it would get more attention from the media. The walk to d'feet was here today. I hope it did well. My nephew, Michael, continues to struggle each day from this disease. As I have said, no one in our families has ever had it that we are aware of so it was quite a shock for us.