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mariner

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PALS
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mt vernon
Hey everyone!
I'm a 48 year old dad with 5 children, 20 - 29. I just found out 9 weeks ago that my middle son Ryan, 25 years old has ALS and was given 2 - 3 years. He is married and has a 1 year old son and a 3 year old daughter. I love him so much I don't even know where to begin! Everyone tells me to keep praying for a miracle but to tell you the truth, I don't even know if God hears my prayers. Every couple of weeks he seems to get worse! 9 weeks ago it started in his left hand and since then it has moved to his left arm, right hand , right arm and now he is just starting to feel it in his legs. I'm going to get him started on glyconutrients and hope this will help. All of us are scared and I can't imagine a day on earth without him! What am I supposed to do!

Thanks
 

terri

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Jul 7, 2005
Messages
126
You are hurting and very scared right now and you have every right to be. Thing is, the doctors can not see the future they just have that educated guess. Your son sounds like he will have lots of support. That he will need as well as the whole family. Read the forums. This one is great and there are others. Check out PLM and the Yahoo Living with ALS for caregivers. You will learn so much about the options that are out there. Many PALS live their lives with life support to see their families grow up. Don't give up, your son does have hope.

terri
 

brooksea

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Hi mariner,

They say ALS is a rare disease and they give you a couple of years to live with no hope. However, the more people I talk to about ALS, the more people I've found that either had someone in their family or a friend that has/had it. And it seems that ALS is striking younger and younger people. Many people live for years with ALS. Next month will be one year since diagnosed for my husband.

I am terribly sorry that your middle son has been afflicted by this disease. We can only hope that a cure or at least a treatment will come along soon. Please hang in there. It is truly devastating when you initially find out that one of your loved ones has ALS. The shock is almost more than you can bare.

You will find support and encouragement from the people here on this forum, as well as those terri mentioned. I would like to add another forum to the list: ALSTDF, which is run by a research org for ALS.

Did your son go to an ALS Clinic?

Your family and your son's family are in my prayers.
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Hello Mariner:

I can completely understand your desire to search for anything that will slow the progression of your son's ALS. These early weeks are perhaps the most difficult and stressful of times.

But I would like to sound a note of caution. You should search for all the information you can about Glyconutrients on reputable sites and read the 'Scamwatch' on this site, both in regard to Glyconutrients and to Mannatech. Make sure your son discusses it with his ALS clinic.

Although much support is obtained through local ALS Societies and other health schemes there will still be some very expensive items that will need to be purchased for your son.

Think about avoiding the Glyconutrient hoopla and instead put money towards things that may need funding and are truthfully a huge help such as:

1. Changes to the house (both interior and exterior) to make it wheelchair accessible.

2. Making the bathroom wheelchair accessible.

3. Power wheelchair

4. Good cushion

5. Hospital bed

6. Bipap (Machine to assist breathing)

7. Lift for transfers

8. Van with power ramp

9. Help in the house for your daughter in law

Practical items such as these could make things a great deal easier for your son and his family.
Making sure constructional changes are made or equipment or is available BEFORE they is needed. This is a huge help and reduces stress on the family. Get advice from your local ALS Society & Clinic as to where to start.
 

CindyM

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New England
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Hi Mariner- so sorry to hear about your son. You landed in a good sport on the internet, though, since this site is full of information, knowledge, and caring folks. The advice form Landscape is right on target. Give yourself time to adjust before you react by spending money that might be put to better use for your son and his family. Write back when you feel up to it and let us know how things are going. Cindy
 

Icanmanz

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Joined
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Messages
947
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PALS
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Uni
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Texas
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Tomball
mariner said:
Hey everyone!
I'm a 48 year old dad with 5 children, 20 - 29. I just found out 9 weeks ago that my middle son Ryan, 25 years old has ALS and was given 2 - 3 years. He is married and has a 1 year old son and a 3 year old daughter. I love him so much I don't even know where to begin! Everyone tells me to keep praying for a miracle but to tell you the truth, I don't even know if God hears my prayers. Every couple of weeks he seems to get worse! 9 weeks ago it started in his left hand and since then it has moved to his left arm, right hand , right arm and now he is just starting to feel it in his legs. I'm going to get him started on glyconutrients and hope this will help. All of us are scared and I can't imagine a day on earth without him! What am I supposed to do!

Thanks

Hi mariner,

First of all, God bless you, your beloved son, and the rest of your family. I was in your shoes a little over a year ago. My oldest son 38 yrs, was diagnosed on March 29, 2006. The doct or told gave him 2 to 3 years. We were all devastated, I for one, lost it completely. I fell int deep depression, which lasted for months. I'd cry at anything, anytime, anywhere. I'd be standing in line at Walmart or any store, the minute I saw any lady with a grown son standing in line, I'd start crying, and I'd be standing there getting all kinds of stares. Let me tell you, it is hard! It's a heart breaker. My son lasted 15 mos. after diagnosed. It was a sad picture, and I prefer not to go into details, but if you would like to ask me questions, feel free. I just lost him on June 3 of this year. He passed at home.
You mentioned yourself, and your children, if you don't mind me asking, where is Mom? Where do you guys live. Are you'll living in the same town? Try to hang in there, and most importantly, be there for your son, and please do not show any negativity. Pals do not go for that. They want for you to be strong. Will be praying for you guys! Keep us posted, please!

xoxoxo,
Irma
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey Mariner, I don't know what to add after all these posts from my mates, but what I can say is that I was 26 when my first Neurologist told me that no much time is left and that I have to join my family as soon as possible. It felt like a matter of few months only and now my New Neurologist is saying that with me it is really going slow and that it is more likely a matter of years, So far I have been diagnosed for a year now and have had symptoms for 2 years now. A week ago I have turned out 28 and still I am living on my own so don't panic, just be strong and ready to help your son and support him.

Omar
 

quadbliss

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Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Mariner,

Sorry to hear about your son. I was diagnosed at 34 and given 3 - 5 years. I am now 43, and living a rich, full life. You, your son, and the whole family will have to go through a grieving period. But when your son finally comes to peace with the idea, if he can find a passion for life, he is young enough to adapt. I guess what I am trying to say is, just because the doctors say 2 - 3 years, doesn't mean you have to comply.

I took Mannatech products in the beginning, spending a lot of money with no results. It was quitting my stressful job that significantly slowed my progression.

Mike
http://quadbliss.com/
 

Jamiet

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Nov 27, 2006
Messages
616
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Learn about ALS
Country
US
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Louisiana
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Carencro
Hi Mariner,

We're sorry, but you are at the right place for support. ALS will turn your lives upside down quickly, so you need to prepare to be strong for your son. He will need support.

We will be here for you, whenever you need, as we are a tight group.

I'm 32, undiag, but have neurological neuromuscular something, we don't know what. I ahve a boy, 6 and girl 1, so i know exactly how your boy feels. It's horrilbe, that's they only way to put it.

Is he on vitamins, coq10 and riloutek? this could slow the progression?

take care,

ask all the questions you want, were here for you.


rgds,

jamie
 

Sammantha

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Aug 11, 2007
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501
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NC
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Newport
The docs should never have said he only has that much time, mine progressed fairly quickly BUT i still have full use of all my body! The atrophy is patchy so more than likely he will not loose abilities in a limb for a long time. I am so sorry that you are going through this, the only thing worse than having ALS is having a child that has it. Sam
 

bdyle

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Messages
62
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PALS
Country
US
State
mississippi
City
picayune
Mariner

First, I like to say I'm sorry to hear that your son has ALS and I will be praying for you and your family. But I agree with what Quadbliss said, don't give up. I was diagnosed in Dec. 05 with ALS by the first neuro at 46, symptons started in Feb. 05, after he told me what all was going to happen to me, he said I had 6 months to a year. Me and my family were devastated, I went thru about 3 months of depression before I realized that if God wanted me to have this disease he was able to help me live with it. I'm still here and enjoying life with my family. God has help me deal with every disability that comes my way, and I thank him for every day he gives me. Tell your son to fight this thing and live every day to the fulless. May God Bless you and your family, and God still here's prayer's.

Billy,
 

mariner

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PALS
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ohio
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mt vernon
Wow! thanks everyone.
I thought by this evening maybe 1 or 2 people would reply but this is awesome! We all live in central Ohio about 20 mins from each other. And yes Irma, my wife is here and all is well! Ryan will have a huge support group between us all. We are a very close family. The thing is, when ever I talk to Ryan, he seems fine considering what we're going through. I think it hurts all of us more than him unless he's putting up a big front. The first thing he told me when he found out was that he was glad it was him instead of another family member. Thats how he is! After talking to his wife a few days ago, she said he is really depressed, but I don't see it. Ryan and I talk alot and we've bummed too but I guess I'll have to watch him close. For my wife and I, the thought never leaves our mind, ever. This is so messed up! I'll be the one putting up a big front when I'm with him because when we're not together, I'm totally bummed.
Thank you all so very much for listing and I will pray every day for all of you guys too!

God Bless!
 

Icanmanz

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Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
mariner said:
Wow! thanks everyone.
I thought by this evening maybe 1 or 2 people would reply but this is awesome! We all live in central Ohio about 20 mins from each other. And yes Irma, my wife is here and all is well! Ryan will have a huge support group between us all. We are a very close family. The thing is, when ever I talk to Ryan, he seems fine considering what we're going through. I think it hurts all of us more than him unless he's putting up a big front. The first thing he told me when he found out was that he was glad it was him instead of another family member. Thats how he is! After talking to his wife a few days ago, she said he is really depressed, but I don't see it. Ryan and I talk alot and we've bummed too but I guess I'll have to watch him close. For my wife and I, the thought never leaves our mind, ever. This is so messed up! I'll be the one putting up a big front when I'm with him because when we're not together, I'm totally bummed.
Thank you all so very much for listing and I will pray every day for all of you guys too!

God Bless!

Hi mariner,

I'm back! I was looking for your posts. You are such a wonderful dad, and I will be praying for Ryan and his entire family. When I pray for my Rudy at night, I am going to make sure to include your beloved son. I am so sorry that you guys are going through such nightmare. That's all it is, a nightmare! My son's illness and later death is always on my mind. There isn't a day that goes by that I don't think of my baby. Mariner, did I tell you that he passed at home? I saw my baby take his last breath. I wanted to die! I never in my wildest dream thought that my baby was going to leave us first. Of course, when the doc said als, it was just like watching my son stand before a judge, and the judge saying, "I sentence you to death." Such horrified news! I felt numb for days. My brain froze completely. My baby was so courageous, I don't know if he acted different when I wasn't around, but he acted so normal. It will soon be 3 months since my son passed, and it feels like a very long time.

May God bless you and your family. Please keep us posted. I am so happy to hear that Mom is around. I was not trying to be nosey! God bless!

xoxoxo,
Irma
 

mariner

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3
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PALS
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US
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ohio
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mt vernon
Hi Irma!
I'm so sorry about Rudy. I can't even imagine my son taking his last breath. What we're all going through is a nightmare!
Did Rudy take any suppliments like Mannatech glyconutrients. I ordered some the other day but now that I found this form I see it is on a spam watch. Is the stuff from this company just a false hope or did Rudy or anyone here at all get any benifit from it? I haven't told Ryan I bought the stuff yet so I will wait untill I hear from you all.


Mariner
 

Icanmanz

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Tomball
mariner said:
Hi Irma!
I'm so sorry about Rudy. I can't even imagine my son taking his last breath. What we're all going through is a nightmare!
Did Rudy take any suppliments like Mannatech glyconutrients. I ordered some the other day but now that I found this form I see it is on a spam watch. Is the stuff from this company just a false hope or did Rudy or anyone here at all get any benifit from it? I haven't told Ryan I bought the stuff yet so I will wait untill I hear from you all.


Mariner

Gee mariner, I wish I could help you on that Mannatech, but I can't. You see my son stayed with his wife and child, and he stayed with me towards the end, because she could not care for him. I am home 24/7 and she is not. I am almost sure he did not take that Mannatech, because I never heard him talk about it. I know he was still eating soft regular food, up until he could not swallow anymore, that's when the Ensure came in. Of course he was on Ensure for a long time, but he also ate, or tried to eat regular food. Why do these things happen to caring parents? I have seen, or known parents that don't care about their children, and they are luckier than we are. Why am I blurting this out? It's true though, I always took such good care of my 2 boys, loved them to death, and look what happened.

Let me tell you what happened on the day he passed. He woke up, he seemed fine, weak, but fine. I did a few things for him. I always helped him with his equipment. After I cared for him, he asked me if I could go to Walmart for him, and pick up a thermal blanket, vinegar, Charmin tissue, a Truckin' magazine, pull up pajamas, a newspaper, and a few other things. I said okay, so I went. I came back covered him with the blanket, handed him his magazine. Bless his heart, he was leafing, and reading his magazine, and only got halfways, and he set it aside. Then all the resr was a nightmare. He started feeling sick, gasping for air. It almost killed me, because these folks cannot talk, that's what is so bad. We were up all night with him. I called 911, even though he had just agreed to DNR. I called the ambulance anyway. They came over, and told me he was ready, he was leaving us. My world came crashing. I really cannot keep on going as of right now. I am having terrible flashbacks. The house became filled with relatives and friends throughout the night. I am taking a break. This is too much for me. You can still ask me questions, I don't mind, I just need a break. God bless.

xoxoxo,
Irma
 
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