Newly Diagnosed

[JanisT8]

My mother has recently been diagnosed with ALS. She is still in the process of getting the final confirmation and has yet to get a second opinion, but she has many of the symptoms of ALS. It has been a rather emotional rollercoaster and not knowing has been hard. I am currently in the Air Force and as such far away from home, this makes it even harder for me. Luckily I only have one year left before I retire but that one year seems like it is a lifetime considering how quickly this disease progresses and the short life span of many of those diagnosed. I just wanted to find some place I could talk out my feelings since I can't be there for my mom at this emotional time.

Janis

 

[Peg B]

Hi Janis,

Welcome with great sympathy for what you must be going through. Do not give up hope. I was diagnosed with ALS Oct 31 2006, but my second opinion on Dec 7 was possible MMN (multifocal motor neuropathy). The jury is still out on which one I have. There are other diseases that look like ALS also. I hope your mom gets better news and please know that you are in a good place here for support. Keep us posted. Best Wishes, Peg

 

[Icanmanz]

My mother has recently been diagnosed with ALS. She is still in the process of getting the final confirmation and has yet to get a second opinion, but she has many of the symptoms of ALS. It has been a rather emotional rollercoaster and not knowing has been hard. I am currently in the Air Force and as such far away from home, this makes it even harder for me. Luckily I only have one year left before I retire but that one year seems like it is a lifetime considering how quickly this disease progresses and the short life span of many of those diagnosed. I just wanted to find some place I could talk out my feelings since I can't be there for my mom at this emotional time.

Janis

Janis, first of all, I am so sorry this is happening to your sweet mom. How old is your mom, and how long has she been having these symptoms? These questions are very important! I am so sorry to hear that your mom's health is making it hard for you, since you are in the Air Force. It sounds like the Air Force is something that you have been dreaming of for quite a while, but let me tell you, if your mom has als, and you have a year to go with your air force, I am so sorry to tell you, that in a year's time als will take a person a long way. That is a horrible disease, and it will not wait, it progresses, and at the end it moves rapidly. It seems to me that you have to choose between the Air Force, and being with your mom, because als will not give you a chance to do whatever. It progresses fast for most. All I can tell you is Good Luck, and I hope you make the right decision, I am not going to tell you what I would do, because I do not want to make you feel bad! Good luck, and God bless!

xoxoxo,
Irma

 

[Peg B]

Hi Janis,

I would like to respond one more time tonight. I had started to write that the first thing you must do is take care of yourself. To the best of my knowledge retiring from the Air Force means you have put in 19 years so far. You CANNOT jeopardize your retirement. Once you know for sure what your mom has please consult with your commanding officers about what you can do over the next year to see your mom. In the meantime communicate with her a lot. Go buy a bunch of cards. I understand you can get them pretty cheap on base. Send lots of notes and call often. Does she email? I know my daughter wanted to come home when I was first DX and that would not have helped her or me. But her calls do help a lot. When my mom was sick each of us sisters and brother commited to do what we could without wrecking our own lives. Some could do more than others based on our circumstances. That is the loving thing to do. Do not drive yourself crazy with guilt and worry. It will not change anything for your mom and only hurt you. You and your mom and the rest of your family and friends have some very tough time ahead so please know you are in my prayers and thoughts. God Bless you, Peg

 

[MtPockets]

Hi Janis

I also was in the Air Force. But that was a looong time ago, 1965, Viet Nam War era.
Just wanted to welcome you to the site and say another thing to consider is the type of ALS your Mom has. I have limb onset which is a slower progressing form of ALS than Bulbar. Perhaps she will have the slower kind and there will be time for you to make it to retirement and then go be with her.
I have to agree with PegB, ask a lot of questions and try to find out all you can about her current condition. Does she still have use of her limbs, can she speak and swallow. Just how far has the disease progressed?
With this information you can make a more informed decision.

God Bless
Capt AL

 

[liz]

Hi Janis -

Sorry to hear about your mom. Obviously I can't speak for your mother, but I can speak as a mom with ALS. I would feel really guilty if my condition caused any of my kids to make decisions which would diminish their futures. In fact, I want the opposite. I want them to move ahead with their lives in spite of what is happening. I would feel better knowing that once I'm gone, they are all set on paths that will to lead them to satisfying lives.

That said, I think I understand what Irma is saying. If I found out today one of my kids had ALS, I'd drop everything for them. Guess it's a "mom thing".

Liz

 

[Al]

Hi Janis. Sorry about your mom. When I was first diagnosed in 2003 my son wanted to come home from a job in the Philippines. I told him no. He has a wife now and a 2 1/2 year old daughter. Who knows how things would have went if he had came home. He was here at Christmas and is coming next month. We cherish the time together and I see my granddaughter weekly by web cam. I am sure your mom wants the best for you. Don't do anything without giving it a lot of thought.
AL.

 

[patricia1]

I agree with Al We want the best for our children at any cost I would and could not ask my children to give up on a career a dream or anything ,and I am sure your mom feels the same Dont make anyone say you are doing the wrong thing Your mother will still be here when you retire,and if there is a cricis of some kind they will let you come home. Write her, call her, and make her know you love her Thats all we all need from our children. No one can play God. I have ALS 8 years Bulbar onset. Its a strange disease,with no rhyme or reason What were you thinking Irma . God Bless you and Yours Pat

 

[CindyM]

Hi Janis- Welcome to the forum. You must be frantic with worry about your Mom. I agree with everybody's point of view, as usual for me it seems. As a Mom you want your children to do what is best for them. I would never think of asking one of my children to give up their lives for me. But those who have recently lost loved ones will have a different viewpoint. People never go to heaven wishing they'd spent more time on the job! It is always the time with family that we miss.

You will have more time than you think to do whatever your heart tells you. Let the second opinion come through and see how she progresses but in the end yhour heart will tell you what to do. Regards, Cindy

 

[Icanmanz]

I agree with Al We want the best for our children at any cost I would and could not ask my children to give up on a career a dream or anything ,and I am sure your mom feels the same Dont make anyone say you are doing the wrong thing Your mother will still be here when you retire,and if there is a cricis of some kind they will let you come home. Write her, call her, and make her know you love her Thats all we all need from our children. No one can play God. I have ALS 8 years Bulbar onset. Its a strange disease,with no rhyme or reason What were you thinking Irma . God Bless you and Yours Pat

Hi, Pat! Wow, did I get myself in trouble, or what? I am a mother that lost my son to als, 15 months after diagnosed. My son's illness changed me totally. I am still devastated. Mmmmmmmh, you have had als for 8 years, Bulbar onset? I always thought that Bulbar onset was the rapid one. That was the one my son had, and it progressed rapidly, especially at the end. May God bless you, can you still get around, have no swallowing problems, no peg, still have your voice? 8 years is a long time for a Pals.

That is the reason why I did not comment on what I would do if I were in that young lady's shoes. Not everyone is alike. I put a lot of things on hold when my son became ill. If they told me that I would have to sell my house, and live under a bridge, in order to help my son get well, by God I would have done it, in a second! Like I said, my son's illness and his passing changed me totally. I do not live my life the way I used to. I tried to spend as much time possible with my son during the time he was ill, and nothing, nor no one stood in my way. May God bless you folks, and I hope God helps that young lady come up with the right decision, regardless! Bless her, and her mom!

xoxoxo,
Irma

 

[patricia1]

I am so sorry about your son There is nothing worse then burying a child.Thats why I know her mother would do anything for her ,and wouldnt want her to put her career on hold. I know we all mean well but thats a discision she has to make. God bless you.

 

[Icanmanz]

I am so sorry about your son There is nothing worse then burying a child.Thats why I know her mother would do anything for her ,and wouldnt want her to put her career on hold. I know we all mean well but thats a discision she has to make. God bless you.

Thank you, Pat! Isn't this a wonderful forum? I only wish I had joined it when my son was still alive. I just joined it about 2 wks ago. Okay, take care of yourself, and God bless!

xoxoxo,
Irma

 

[CindyM]

Hey Irma-don't feel bad about putting your foot in your mouth. Actually I don't think that's what you did: you spoke from the perspective of a CAL who misses her son. As a person who has caused more than one uproar around here, this controversy seems quite reasonable. Everyone on this thread is being gentle about each other's feelings, which is the goal we all strive for anyway. Don't lose any sleep. :-D We'll all just get together for a big group hug and move on. :-D

Janis- are you still there? Write and tell us more when you have the time. Regards, Cindy

 

[Icanmanz]

Hey Irma-don't feel bad about putting your foot in your mouth. Actually I don't think that's what you did: you spoke from the perspective of a CAL who misses her son. As a person who has caused more than one uproar around here, this controversy seems quite reasonable. Everyone on this thread is being gentle about each other's feelings, which is the goal we all strive for anyway. Don't lose any sleep. :-D We'll all just get together for a big group hug and move on. :-D

Janis- are you still there? Write and tell us more when you have the time. Regards, Cindy

Thank you, Cindy! I have been saying a prayer for you guys since I joined this forum. God, I did not realize that so many people are coming down with this killer disease. May God bless each one of you guys!

xoxoxo,
Irma

 

[Peg B]

Hi Janis, Irma,

A father, who lost his child once said, "I never knew such pain existed." We all speak through our own filters and we never really know another person's story and where they come from. I lost my youngest sister who was my very best friend in a car crash. She died instantly and graduated posthumously from the university a few months later. She was 6 years younger than I was. I would have done anything to keep her and nurse her but I never got the chance. Many things happened as a result of her death but one in particular was I stopped going to school and missed my Masters Degree by 2 classes and a research paper that I had already developed. The time went to mourning and being lost. I got a different Masters later but I had to start over.
Later, as I said before, we all chipped in to care for our mother as we could. I was responsible for her medical needs. She had dementia from Parkinson’s and two cancers throat and neck. She spent her last 3 weeks in my apartment with my husband and myself and our two children. On the first day of her "viewing" at the funeral home we found out my oldest sister's breast cancer went to her bones. She fought 6 more years sometimes really hard and I was one of her medical persons. But I learned, and told her I had to finish my specialist degree before she died or I might never do it. So I finished Dec 16 and she died Dec. 31 1999. My brother has been in and out of the hospital for a year but he is now on the road to recovery. My other two sisters are breast cancer survivors one 10 years and one 1 and a half years. So you see my perspective is quite different. My youngest sister was 22 when she died and I believe my job here is to do what I can but to live too. She died in 1976 so I have had time.

May God Bless you as you go through this. My heart is with you both and all the others who go through this journey. Peace be with you. Sincerely, Peg