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letitrain

New member
Joined
Jun 4, 2010
Messages
7
Reason
Loved one DX
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US
State
ohio
City
cincinnati
hi everyone - my mom was diagnosed with als on march 22nd of this year. she is 55 years old and was working as a RNA but has now had to quit her job. my mom is the most amazing and strongest person in my life. i'm so scared about everything she's going to have to go through. i'm very confused about this disease and could use any help understanding it better. i am the strong one as far as my family is concerned but inside i am crumbling. along with my mother having als , my brother's biological father also has it. he was diagnosed about 1 1/2 years ago and at that time informed my grandparents of his diagnosis so they could let my brother know. now that my mom has also been diagnosed i feel like maybe it was some kind of environmental factor is the cause of their als and not genetics. so, because of this i'm so scared that my brother will be diagnosed (he doesn't want to know if he has it) with this same thing. has anyone ever had two parents that have als? i also feel very guilty for things like not having any grand-children for my mom and she hasn't gotten to see me get married or become who i want to be. i'm just a server and wish i could be something great for my mom to be proud of. every day i cry a little to myself but feel stupid for doing so because it's not going to fix anything. my friend said i need some kind of support group but the only one i know of around here(cincinnati) my mom is attending and i don't want her to see what this is doing to me ......so i found this group and am hoping someone that reads this can help me, for my mom's sake if not for my own. thank you to anyone that may read this and have some kind of advice/support.
 
Dear Letitrain,
I'm so sorry for you and your family having to travel this road. Was your mom diagnosed by an ALS specialist? I've never heard of both biological parents having ALS...how awful. You don't say how old you are, but I'm guessing early 20's.

As a mom of twin girls turning 20 this year, I can tell you, the pride a mom feels is in the person you are-not the things you do. Don't waste energy feeling GUILTY about anything...You will want to find ways to celebrate the small gifts of each day and share those together with your mom. Don't let yourself get caught up in things that will take your attention away from finding joy together each day.

You will find a great deal of support here, from PALS (people with ALS) and CALS (caregivers of someone with ALS). There are lots of people who are very knowledgeable and can help you understand this disease. There is very little known about this disease (environmental causes vs. other ways...)Take some time and just read a little bit at a time so you don't overwhelm yourself...everyone's experience is unique, but there are common challenges.

You will find the PALS and CALS on this site the most courageous, honest, wonderful people-and they will answer you honestly if you need perspective. We are ALL here to hold you up and support you through this journey.

Peace,
Melody
 
Melody is right. You found the right place. A lot of places have separate support groups for PALS and CALS. Maybe hers does too. Was your brothers father a Veteran? Also, do not consider yourself "just a server" That was my profession, and I am proud of it. HUGS Lori
 
thank you melody and lori i'm glad someone responded i was afraid noone would answer me. i am trying to take everything day by day but i was feeling so alone. i'm sorry for saying that i'm just a server. my mom was a server while i was growing up and she made it clear then that she wanted more for me. that's where the guilt comes in. i'm very much a free spirit and live in the moment and don't worry about the past or future. my mom is wonderful and also very different from me. she has always worried about the future and planning and worries about what people think of her.........i do not. now that she has been diagnosed with this i feel like i'm starting to worry what each new day will hold and i really just want to be myself again. (happy and in the moment). neither my mom nor my brother's biological dad were in the military. i've heard alot of people that were in the military get als. why? my mom was diagnosed once through a neurologist? maybe but on march 22 she saw a lady that is supposed to be the best als specialist in our area. also if anyone could answer this .....my mom quit taking her medicine because at first she thaught it was making her worse(now she feels differently) but she didn't want to take it anymore because "it only gives her a few months extra" and she said that's not much.......but to me it is. so are there any meds or other things i could get for her? even natural supplements or anything that may help her? her speech is going downhill along with her breathing but she is not on any type of support yet like feeding tube or ventilator. both her arms have been slightly effected so far. any home remedies for her dry mouth? and what can i do for my brother? is there anything he should be doing now to help him out later if he does unfortunately get it as well? i read a few things last night before going to bed and i can say i already don't feel so alone. so thank you to everyone on here and whomever started this site.
 
oh and i keep forgetting to introduce myself....sorry. my name is sonya and it's nice to meet the two of you. and melody......what is the one thing i can do to make my mom know that i am going to be okay? i know that her biggest fears are for me and my brother and i would love to make her feel like she raised two strong independent children that she has taught everything they know. i saw you diagnosis date was last year so i was wondering hoe you are doing now? thanks again sonya :)
 
Dear Sonya,
My husband is the one struggling with a diagnosis. He has been diagnosed as "MND-Possible ALS", so technically, I should probably take that date off, since they are still hoping to find something else. He is still getting progressively weaker, but not as quickly as is typical with ALS. They think, now (or hope) that it may be MND caused by exposures from his service in the Air Force in Iraq. We've gotten better at accepting the unknown, while at the same time preparing for the very real possibility that it may indeed by ALS.

As far as reassuring your mom...just SHOW her she raised 2 strong, independent children, by having the courage to walk this road with her. By not avoiding the truth and talking openly... ask questions that are important-understand what her wishes are so you can give her the support she needs. Just Be there...

We're here to hold you up dear!
 
i posted a reply before i told you my name but it hasn't shown up yet.......i didn't notice the quick reply until then. how long does it usually take to post when you don't do a quick post?
 
Sonya,
I don't know if the support group your mother is going to is through the ALSA group, either way call them 866-273-ALSA they will know other support groups in Cincy for you to attend or call your local Hospice or Hospital.
A parent is only as happy as their saddest child....you do not have to do great things, be a certain way, give her things...she loves you, just as you are right now...strive to find happiness in your life. ALS will make her feel like she can't be enough for you. Your happiness is the best "medicine".
There are a lot of resources in Cincinnati, reach out to them.
Much Love,
Jay & Lori
Wooster, Ohio
 
thank you for the phone numbers jay and lori. just thaught i'd mention that we(my whole family) are going to the reds game on sunday. I'm sure you may know but if not it is lou gherig's day at the ballpark. tickets were 75$ and the money goes to the foundation......it's on the party deck. it should be a great time! maybe i will see some of you there?! and about the reply i had earlier that hasn't shown up in response to lori and melody i guess i'll try again. i was saying thank you for responding to me. i was worried noone would answer me. I'm sorry lori about saying i'm JUST a server. i should explain that it's more that my mom was a server all while i was growing up and would always tell me that she wanted something better for me. i loved what she did. it was so fun to me at the time. i just wish i could make her happy with what i do. i am very different from my mom ....she has always worried about the future and what people think of her and i am just the opposite. i live in the moment and don't worry about things. but since this has happened i feel like i'm always worried about what tomorrow will bring. i want to be myself again. (happy and in the moment). and i feel like every day i'm going to worry about if my brother has it too. is there anything i can tell my brother to do Now that could help him if he gets it in the future? and my mom has quit taking her medication for it. is there anything i should tell her to take instead. and she's having trouble with a dry mouth any home remedies? well hopefully this one goes through. and i also mentioned that last night i started reading a few posts and stuff on here and it's so nice to not feel so alone. thank you :)
 
Don't worry that your mom has stopped taking the rilutek (since that is the only medicine strictly for ALS patients, I'm guessing that is what you were talking about). There has been much debate about it. Talk to your step-father. See if anyone else in his family was diagnosed with ALS. Familial ALS is really not that common. This could just be a case of very, very odd coincidence. I certainly hope so. Your brother shouldn't live his life in anticipation of ALS, don't you either. As the other have said. Your mom is only as happy as her saddest child.
 
Sonya,
Welcome to the forum. You have a great group of people here. I am fairly new here, too. My mom was diagnosed with ALS Sept 2009. I am an only child and finding out that my mom had an incurable disease has been incredibly difficult.
Jay gave you some great information. My parents and I go to the ALS support group here in Richmond and have found it to be very helpful. You get to meet some wonderful people and you get research updates and you get to talk about what's going on. You can also go to the MDA/ALS web page. There are some really good resources there that are free. There is also a link to the ALS Guardian Angels. Are you a member of Facebook? There is a great network of ALS patients, caregivers and supporters on there.
I am very sorry to hear about your mom. I know all the emotions your feeling and I understand. If you ever need or want to talk, let me know. I'm here for you.
Take care, and have a blessed day.
 
Hi Sonja,
I am so sorry to hear about your mom, but you certainly have hit the mother load of support here! My dad was diagnosed last Sept. as well. I have found that just showing them that I am okay, that I am happy with the way my life is going, and that I am stable is of tremendus help to him. If you are happy with your life, do not change it just for her. It will make you unhappy, and as a mom, she will pick up on that. Yes, I know all about the feeling of being the strong one in the family, and crumbling inside. Actually that is a good way to be, but try and do your crumbling away from mom. I can barely make it to my car before the tears come. Right now, you are in the what I call "the walking zombie denial stage" What you are really doing hun, is grieving believe it or not. That is normal. This stage will pass and you will be able to focus on mom, but also your own life again. (at least a little bit) The grief will continue as you see new symptoms with mom come up, but you will feel more in control with your feelings than you do now. I am disabled, my parents HATE that, but thanks to a great doctor I am able to go back to doing my beloved job 3 x a week 5 hours a day. It makes me happy to work. It is my escape, and I love what I do. It is good for me mentally and makes me a better caregiver to my dad, and my mom who also needs support because her heart is so broken and she is overwhelmed, and my daughter who is also overwhelmed with grief. So, that said do not change ANYTHING that makes you happy, you will need those places to go and things to do to get your mental breaks, and that will make you more stable for mom. As far as the Rilutek, the jury is still out of it as far as how long it does actually extend life. Everyone's progression is so different, some fast, others have ALS for years and years. My opinion on the Rilutek is if she is not having any side effects from it, and she is not having to pay 1000.00 a month for it if she does not have the money, I would still want her to take it. Make sure that her liver is doing well, because it can affect the liver. As far as things that slow the disease down, we have found many personally. But then again, everyone reacts differently to everything. My dads ALS specialist thinks there are literally different strains of ALS, thus the differences in progression, and differences in reactions to ways of trying to slow the disease down. So far, with diet, detoxing, getting out all the toxins in the home and suppliments just to name a few things, my dad is doing really really well. After one year he is still walking, (slowly) talking (a bit slurred) and eating. I originally came on here to learn as much as I could, and I ended up making the best friends I could ever want in life. It is a place of refuge for me. A place where everyone understands what you are going through. When I read a good thread that may help in the future, I bookmark it. Please know that we are all here for you, even if you just want to vent your grief, or ask questions. Hang in there kiddo!
Hugs, Kari
 
Welcome Sonya! Sorry about your mom. Just be there for your mom, that will mean the most for her.

Hang in there!
 
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