luvnmm

hoping your family the best .you take care luvnmm ,my prayers go out to your family godbless

Hi luvnmm my heart goes out to you ... i too have undergone many of the painful experiences that you have and without the supprt of an understanding and loving partner it is very difficult almost sometimes worse than doing it alone ... my partner wouldnt accept my mental illness as something i couldnt help or something you could just fix ... in fact he kind of got over the whole thing and left me to start a new life before it was TOO late ... i was devastated at first but we have bee apart for 9yrs now and i have a new partner of 8 yrs who is the total opposite of him and im so glad my husband did leave ... onto your mum this is a very sensitive subject is your mum in denial or your dad ... does it upset your mum to talk about her illness or does your dad just think it might ? can you talk openly to your dad about these things and maybe help each other and in doing so be there for your mum ... hang in there .. thinking of you XX karen

Hi luvnmm im a new friend and trying to get to know you better .. i see on your profile you suffer depression ... my heart goes out to you i have had it for years and brought up two children myself it is so difficult keeping yourself together let alone being the mum you want to be ... who in your family has ALS im sure this extra pressure is very hard for you ... its so difficult to be there when your not well yoiurself and i understand the psychical and mental pain of depression ... take care of yourself as well as those you love because you need support too ... thinking of you ... karen

luvnmm,
I can't imagine you saying anything hurtful but thank you for your sweet response. No one said anything hurtful to me but I was reacting to some less than kind remarks to Robynnblue.
Northern Dancer

Trying to find somewhere to talk to people who have family members with ALS. It is so hard to manage my children, job and take care of my sweet brother. We continue to stay positive, but each day he declines a little more. He was diagnosed in Oct 09, but we think he probably started showing symptons about two years ago.

I lived in Hampton, VA from 2004-2008. Where is Henrico?

good morning, i am sorry to hear about your mother. I am a caregiver to my mother in law, she also has bulbar onset. The only thing i can tell you is I cry alot while i shower, driving home from work, etc. That way she doesn't see it. Believe me sometimes I do cry in front of her. i try not to but where she is rightnow I sometimes can't help it. They understand and when she needs you to be strong you will be. Not sure how it happens but you will be OK. if I can do anything for ya please feel free to ask, evevn if you just need to scream, it does help. Many hugs Josie

Hi,
Im at work so I have to be fast. For the last week Ive been very worried. I have cold hand and feet and numbness and pins and needles. I went to a doctor on Monday. Blood tests were fine and Im havind an EMG in 3 weeks. As i read on Google Im convincing myself i have ALS. Every symptom I read i start getting. I just dont know if people get all these symptoms at the same time. Last night my face started like cramping. I am a very nervous person and make myself sick worrying. Is it possible that all this is happening in 1 week? Cold and cramping, sore knees ( i sit crosslegged all day lond) Im going crazy worrying, I cant eat or sleep. Thanks

Hi I'm in the same place as you - my mum in the last 18 months has lost the ability to speak and to eat, she was just down for 7 days and she can no longer hold her head up unaided. I cry all the time but never in front of her......she is brave, she's the one going through it not me, and right now she is still here with us all, so i plan to make the most of what she can do right now and face tomorrow when it comes. Its not easy for me, the future i imagined has now been swept away and i have two very small children who will grow up never really knowing what a wonderful nanna they have and how very much she wanted to be there for them as they grew up

Linda
Thanks so much for checking in on us. Serena is doing OK. She has started wearing her Bipap at night so she is sleeping better. I'd say she is on her bipap about 20 hours a day now. Our next clinic is June 11th so we will see how her FVC is doing. Again, it was so thoughtful of you to inquire.
Jim

Hey Linda!! You have private messages now!! I sent you one......Hugs, Kari

Hey Girl, you know our parents were dx the same month, and have the same onset. Your depression meds sound like what my daughter goes through. For her, meds will only work, if at all for a month or two. When I was doing really bad after my husband died, my doc added Zyprexa to my regular SSRI and I turned the corner finally! Have you ever tried to add something to what you are already taking? I have to switch altogether about every 2 years or so. Hang in there hun. Your emotions are on double duty now. Hugs, Kari

Good Morning! How are you today? I hope you have a good day full of sunshine!

Hey hun, I know what you mean about not being able to talk to your parents about anything stressful going on in your life. It sucks huh. Any stress truly sets back the disease. My dad is the one who has it, but mom is maxed out too, so I lean in here a lot, and on my own counselor. With my daughter, who is 20, I am still the mom. I have been clinically depressed since my teens, but have had great success with medications. Then after my husband died suddenly, I completely disassociated for 2 years. I went fruit loops. It took a lot of counseling, and additional medication to get me back. I am doing really good now. Hey, what does not destroy me makes me stronger right! You hang in there kid!!!!........Hugs, Kari

Thank you! I had another idea too...send a request to just my ALS friends via FB email, that way no one sees them. I'll check Blubear's thread too.
Thanks!