I'm a newbie

[palomapicaso_1]

I am new at this, now quite know what I'm doing yet. Our daughter was diagnosed with MS less than a year ago and this has been a long and painful learning process not just for her but for the entire family. Realizing this is just the beginning we again as a family are trying find other families and groups with similar stores and experiences, this continues to be a learning experience. I trust that by comparing notes with others or just sharing views and sometimes sad stories, the journey becomes a little more tolerable. I also look forward to share what little I've learned with others as an attempt to help. Until next posting - palomapicaso_1

[D_HOLLAND]

My son Chris was dx'd in April of 2007 at the age of 23

It has been a roller coaster ride for sure and we still have issues we have to deal with on a daily basis

How old is your daughter?

[palomapicaso_1]

Our daughter is 34, full of life beautiful girl married with 2 young children her name is Antonia, to be honest I don't think I could have handled such news/change in my life if this had happened to me. I admire her so much, right now we are all learning from her. Some times, however, I don't feel like I'm doing a very good job of helping her or say the right thing, I cave in, I don't let her see me but every minute I spend with her I just feel like crying and screaming. How do you stay strong with your son, do you some times feel guilty because it happened to him instead of you?

[D_HOLLAND]

It's hard sometimes mainly because he can't work so he lives with me and he gets very lonely.

Thank God he has a beautiful little girl that is his life - she comes every other weekend and things are great!!

As a mom we all hate it when our children (even adult children) are hurting or are going through something like this MonSter - I for sure wish it were me and not him.

[laurens]

I am Haris ,New to this forum. I am 24 ,Male . Welcome to all .I think forum is a place to share our problems with each other and find thier best solution.SO keep doing posts and solve ours problems. Have a nice day....

[Eliel]

Hi, Everyone,

I am very sorry about your children who have MS. My 28 year old son was diagnosed recently. I also have MS, as does my sister. Our mother also had MS. I really didn't expect my son to develop it. It has been quite a shock, but I think easier for parents who also have it as they should already know quite a bit about it. I can't imagine how frightening it must be for someone who knows nothing about the disease to be diagnosed.

My son is on a dmd and doing well, so far, so I am hopeful that will continue. I hope they figure out the cause of this disease one day soon.

[heliotrope]

I think many families are still learning how to handle things on a daily basis. I'm on the other side of your story (a 20 something child), but please let me know what I can do to ease your process.

[Momma60]

know your pain

Hi Palomapicaso, my daughter was diagnosed in '08 with another autoimmune disease, then for MS in '09. she was 24 at that time. She is now 26, been on Rebif and Copaxone. Had a relapse in Jan,now facing decision on changing meds again.It is mind bogling if you try to understand everything about this disease.I have cried for 2 days because her options and the side effects of the meds alone will scare you to death.But we have to be strong for them and try to find the positives.She is not well but shes not as bad as she could be.So hang in there they are coming out with new stuff all the time and God willing they will find out more in our lifetime.

[Nenner]

I see you live in Mpls., I am just across the river in WI about 20 miles from St. Paul.
Mine is not a happy story so if you don't want to read it that is fine, my story is not the norm for people with MS but none the less it is my story
My daughter Lindsey was dx with MS when she was 14. From the unset hers was very aggressive, I can't remember a time when she didn't have some symptom that wasn't overwhelming for her and the family.

From 14 to 18 we took care of the meds, the shots and tried to keep things in check but once she was 18 she wanted to be on her own and live her life, she didn't take care of herself and she progressively got worse, by the time she was 26 she could not longer walk, she had the tendons behind her knees cut due to spasms that were so bad it was cutting off the circulation, had she not had this done she would have lost her legs.

At 27 she was in a nursing home and could not move or speak except for an occasional word, Easter 2009 she developed pnemonia,she was is the hospital for a week, out and then back again with the same thing.
On May 7, 2009 Lindsey lost her battle with MS, four days after her 28th birthday.

That I didn't push things after she went out on her own and kept better tabs on her and what she was doing is something I will have to live with, had I done that maybe things would have been different.
That I miss my Lindsey more than words can say and live with the guilt that I could have done more is something I deal with daily.


I guess by writing this I hope that you and all the other parents with kids with MS learn from my mistakes- doesn't matter how old they are they still need us to guide them and keep them on the right path no matter how big a fuss they make.

Lindseys 3 sisters and other family members now have a team called "Team Ruthless" and we do the MS walk in her memory and for all the others in hopes that no parents will have to feel the pain of losing a child to this disease as I have.
Thanks reading my story.

Janine (Nenner)

*PARAGRAPH BREAKS ADDED BY MOD... FOR READABILITY*

[aitch10]

Welcome! Speaking as "the daughter with MS" I'd like to suggest you continue learning from your daughter and be patient with whatever changes she goes through.

I feel pressure to be doing well from my parents. They don't mean it that way, but I know how important my health is too them so I feel bad whenever I have a bad MS day.

[palomapicaso_1]

I see you live in Mpls., I am just across the river in WI about 20 miles from St. Paul.
Mine is not a happy story so if you don't want to read it that is fine, my story is not the norm for people with MS but none the less it is my story
My daughter Lindsey was dx with MS when she was 14. From the unset hers was very aggressive, I can't remember a time when she didn't have some symptom that wasn't overwhelming for her and the family.

From 14 to 18 we took care of the meds, the shots and tried to keep things in check but once she was 18 she wanted to be on her own and live her life, she didn't take care of herself and she progressively got worse, by the time she was 26 she could not longer walk, she had the tendons behind her knees cut due to spasms that were so bad it was cutting off the circulation, had she not had this done she would have lost her legs.

At 27 she was in a nursing home and could not move or speak except for an occasional word, Easter 2009 she developed pnemonia,she was is the hospital for a week, out and then back again with the same thing.
On May 7, 2009 Lindsey lost her battle with MS, four days after her 28th birthday.

That I didn't push things after she went out on her own and kept better tabs on her and what she was doing is something I will have to live with, had I done that maybe things would have been different.
That I miss my Lindsey more than words can say and live with the guilt that I could have done more is something I deal with daily.


I guess by writing this I hope that you and all the other parents with kids with MS learn from my mistakes- doesn't matter how old they are they still need us to guide them and keep them on the right path no matter how big a fuss they make.

Lindseys 3 sisters and other family members now have a team called "Team Ruthless" and we do the MS walk in her memory and for all the others in hopes that no parents will have to feel the pain of losing a child to this disease as I have.
Thanks reading my story.

Janine (Nenner)

*PARAGRAPH BREAKS ADDED BY MOD... FOR READABILITY*

Dearest NENMER
I just don't have the words - I can't imagine you pain, I cry as I write these lines, how can life be so unfair, I just don't understand, I refuse to unerstand, why ? I wish I could speak soothing words to you but I cant' I'm angry, I'm sad, I'm in the middle of a storm - I just hope you find peace in your heart now -

[palomapicaso_1]

Hi Palomapicaso, my daughter was diagnosed in '08 with another autoimmune disease, then for MS in '09. she was 24 at that time. She is now 26, been on Rebif and Copaxone. Had a relapse in Jan,now facing decision on changing meds again.It is mind bogling if you try to understand everything about this disease.I have cried for 2 days because her options and the side effects of the meds alone will scare you to death.But we have to be strong for them and try to find the positives.She is not well but shes not as bad as she could be.So hang in there they are coming out with new stuff all the time and God willing they will find out more in our lifetime.

Dearest MOMMA60
My heart goes out to you, I silently whait for whatever is next, and I'm so afraid - I love my child so much and as thankful as I am for her still being alive sometimes I wonder what the purpose of this whole plan is - knowing I am not the only one in this situation, offers support. Hang in there MOMMA, you are not alone.