Aa
New dx - from Mattson- Please read.
My wife had just been diagnosed today with MS. Reading your posts not only brings a tear to my eye but also offers hope that there are others going through this too. What's my job as a husband to help my wife through this? She is the breadwinner and the dominate one in the marriage. Meaning she makes the rules and the way our girls are to be raised. My two girls are 5 and 3 and what should we expect of them through this? Any help is grateful. Thank you all for your stories. God bless.
Welcome! My senerio is different but much the same. It is our son age 13 that has highly suspected MS. Started when he was 11. I have learned so much from this forum and have turned to them many times for support. It is hard to tell a child about MS. What I do know is there are so many stories about MS on the internet and one must be careful. I only read what the MS Foundation sends out now. They have so much information, pamplets and DVDs. The most important I think is to take one day at a time. I know several people with MS and all are different levels. I know a few that it really hit them hard (but they have other complications) and I know some who received early treatment and do pretty darn good. I have come to realize that no one can tell me what course this will take for our son. Only time will tell because everyone is so different. I think honesty, laughter and communication are key. There are times when I answer "I don't know". I do think kids are so very smart and truly know when something isn't right. I think they are less scared and feel involved when they know there mom is sick and she will have some good days and some bad but you are a family, they are loved and as a family you will be just fine. We use lots of humor. I, at one time, wasn't sure what to do, what to think but this forum and great group of people have become my support. I read and learn a lot from the posts and I ask questions a lot. I wish you all the very best!
Hi Mattson,
Welcome to the forum. I'm glad you found us while searching for ways to live with this "new" life.
Being a Mom and wife, always following up on things, making sure everyone has everything they need to live, eat, sleep in peaceful smooth flowing household myself, I'll speak to what I know has helped me, and it does indeed start with communication as Alex speaks to.
Not just speaking from the mouth, but body language "says" alot. She will need you to know her like the back of your hand. Lend a hand, but back down when she can, or wants do things herself. If you are unsure sometimes, just gently ask if she's got it.
I highly recommend you both attending a newly diagnosed seminar offered by the drug companies, and the MS society. That is the absolute best 1st step to make once she has a grip on her limitations.
I did not attend one right away because I was not functioning well, so you'll have to be the judge on when to research and find a handful to present to her, if she doesn't have her eye on that yet.
Nothing happens fast in this MS world, it's all slow. The lifestyle changes, the coping mechanisms, and the daily grind all comes to a halt. A fair amount of acceptance much accompany that - doesn't mean you'll have to like it initially, but eventually you may find that balancing act.
I do hope our combined advice helps you move forward with your thoughts and care. Always remember that her situation (body and mind) she's in now, can improve.
Please ask anything, and if you feel comfortable, tell us a little about how she's doing physically and mentally.
-Shell
Welcome to the forum. I'm glad you found us while searching for ways to live with this "new" life.
Being a Mom and wife, always following up on things, making sure everyone has everything they need to live, eat, sleep in peaceful smooth flowing household myself, I'll speak to what I know has helped me, and it does indeed start with communication as Alex speaks to.
Not just speaking from the mouth, but body language "says" alot. She will need you to know her like the back of your hand. Lend a hand, but back down when she can, or wants do things herself. If you are unsure sometimes, just gently ask if she's got it.
I highly recommend you both attending a newly diagnosed seminar offered by the drug companies, and the MS society. That is the absolute best 1st step to make once she has a grip on her limitations.
I did not attend one right away because I was not functioning well, so you'll have to be the judge on when to research and find a handful to present to her, if she doesn't have her eye on that yet.
Nothing happens fast in this MS world, it's all slow. The lifestyle changes, the coping mechanisms, and the daily grind all comes to a halt. A fair amount of acceptance much accompany that - doesn't mean you'll have to like it initially, but eventually you may find that balancing act.
I do hope our combined advice helps you move forward with your thoughts and care. Always remember that her situation (body and mind) she's in now, can improve.
Please ask anything, and if you feel comfortable, tell us a little about how she's doing physically and mentally.
-Shell
The most important thing in a MS marriage is good communication. This means both partners being able to be as honest as possible. You will need support for yourself, all partners do. The National MS Society is a great source of information. Some Chapters have a couples retreat with a workbook which is helpful. Other times the course is offered as a teleconference.
Both people in a marriage will react to the diagnosis and the symptoms differently at times.
My husband will tell you it is important to have an outlet. He bicycles to keep his stress down. He has made friends with a guy up the street whose wife has MS. He can talk to him.
Both of you have the right to get angry at any point. If this is not allowed too much tension builds.
Adaptability is the key with this or any illness. Your roles may have to change at some point. The more easily this can come about the easier on everyone. This usually is not the case. People with MS do not like it when they start losing control.
Control in life is an illusion. None of us really has much control over anything other than our attitudes.
My husband and I have gone through the MS diagnosis and now me having a very deadly cancer. We have learned to be straight with each other. I have learned to not let it be all about me and my illnesses. I am also very supportive of his cycling even if it means he is leaving me in the care of others to go on long rides. I know he needs it.
Our roles have changed. I have had to let him be the care taker. I also realized my wanting to control everything had to change. It was just too tiresome. Sometimes things just do not get done the way they used to.
Our house is not as clean and that is just the way it has to be. My husband and I have also learned to take help from others.
Honesty, humor and staying the course.
Alex
Both people in a marriage will react to the diagnosis and the symptoms differently at times.
My husband will tell you it is important to have an outlet. He bicycles to keep his stress down. He has made friends with a guy up the street whose wife has MS. He can talk to him.
Both of you have the right to get angry at any point. If this is not allowed too much tension builds.
Adaptability is the key with this or any illness. Your roles may have to change at some point. The more easily this can come about the easier on everyone. This usually is not the case. People with MS do not like it when they start losing control.
Control in life is an illusion. None of us really has much control over anything other than our attitudes.
My husband and I have gone through the MS diagnosis and now me having a very deadly cancer. We have learned to be straight with each other. I have learned to not let it be all about me and my illnesses. I am also very supportive of his cycling even if it means he is leaving me in the care of others to go on long rides. I know he needs it.
Our roles have changed. I have had to let him be the care taker. I also realized my wanting to control everything had to change. It was just too tiresome. Sometimes things just do not get done the way they used to.
Our house is not as clean and that is just the way it has to be. My husband and I have also learned to take help from others.
Honesty, humor and staying the course.
Alex
COMMUNITY LEADER
Hi Mattson, welcome to our little corner of the web, though I am sorry that MS has come into your families lives. Here's my perspective, our sons and i'll ask DH if he's comfortable imparting his when he gets home from work tonight. We're Australian so fair warning, ozzies commonly have a wicked sense of humor, and we've got 20 years of (bad) marriage jokes in our repitoir lol :o)
Your job as a husband and partner is self evident, you will 'worship' her every second for the remainder of your life, she is right and always will be right. No her butt will never look big in anything and even if her butt warrents being named as the 7th planet, her butt is always always tiny unless she wants it to be otherwise. You will like to wear pink shirts and enjoy spending endless hours shopping for handbags, whats its and thingyimibobs. Your job is to indulge her every whim and oh to carry the endless supply of shopping bags! She is woman hear her roar (rofl!)
On a more serious note, little kids are resilient little creatures, your normal is their normal, mum will just be mum, loved for her strengths and for her weaknesses, to them she'll just be their mum who happens to have MS. We have been very open about this with both our children, our youngest is just in his teens now so my motherly halo is slightly tarnished lol but i'm pretty sure its still a bit shiny, though maybe not after i tell him to clean his room, again! lol
I really believe that parents teach their children how to be, often with out realising these teachable moments are actually happening. If your calm they're calm, if you laugh they will laugh etc. little eyes are pretty much always watching and taking notes, they will mimic your behaviors and adopt them as their own. Most lessons in life are not obviously taught, they are absorbed though their environment, their experiences, their parents and family etc. Teens are chaotic, its a rule that everything you say or do or have done, will be totally wrong, so teach them how to be, whilst they are still young enough to think the sun rises and sets around you. lol
From the persective of being a headstrong independant strong woman, the best thing my husband has every done is to let me still be in the driver seat. His instinct is to take over, to protect, to fix everything but I am still me even at my best or worst, so he understands that it would drive me nutts if i had my independance pulled out from under me. He trusts that i will ask for help, gritts his teeth when i'm pig headedly doing something he would rather i didnt and when his instinct is screaming for him to take over, he asks first, still giving me the choice to say no i'm fine. I actually think i love him even more, for not forgetting who I am, I am still me! :o)
From a childs perspective (written by him): While a mum with MS may be affected physically, with symptoms such as varying degrees of tremors, possibly having to go to bed for a sleep to regain energy and the occasional
light dizzynes and falls etc, your mum will retain the personality you love her for. My mum still makes me laugh, makes me cry, makes me happy, makes me sad and sometimes makes me angry. (lol)
We have some great health pages, you might like to read them, found just to the right of your screen and you'll find that most MS organisations have packages designed to help partners and children so they might be worth contacting. If you have any questions, any question at all, someone usually will have the answer for you or at least be able to point you in the right direction, so just ask away.
Cheers............JJ
Your job as a husband and partner is self evident, you will 'worship' her every second for the remainder of your life, she is right and always will be right. No her butt will never look big in anything and even if her butt warrents being named as the 7th planet, her butt is always always tiny unless she wants it to be otherwise. You will like to wear pink shirts and enjoy spending endless hours shopping for handbags, whats its and thingyimibobs. Your job is to indulge her every whim and oh to carry the endless supply of shopping bags! She is woman hear her roar (rofl!)
On a more serious note, little kids are resilient little creatures, your normal is their normal, mum will just be mum, loved for her strengths and for her weaknesses, to them she'll just be their mum who happens to have MS. We have been very open about this with both our children, our youngest is just in his teens now so my motherly halo is slightly tarnished lol but i'm pretty sure its still a bit shiny, though maybe not after i tell him to clean his room, again! lol
I really believe that parents teach their children how to be, often with out realising these teachable moments are actually happening. If your calm they're calm, if you laugh they will laugh etc. little eyes are pretty much always watching and taking notes, they will mimic your behaviors and adopt them as their own. Most lessons in life are not obviously taught, they are absorbed though their environment, their experiences, their parents and family etc. Teens are chaotic, its a rule that everything you say or do or have done, will be totally wrong, so teach them how to be, whilst they are still young enough to think the sun rises and sets around you. lol
From the persective of being a headstrong independant strong woman, the best thing my husband has every done is to let me still be in the driver seat. His instinct is to take over, to protect, to fix everything but I am still me even at my best or worst, so he understands that it would drive me nutts if i had my independance pulled out from under me. He trusts that i will ask for help, gritts his teeth when i'm pig headedly doing something he would rather i didnt and when his instinct is screaming for him to take over, he asks first, still giving me the choice to say no i'm fine. I actually think i love him even more, for not forgetting who I am, I am still me! :o)
From a childs perspective (written by him): While a mum with MS may be affected physically, with symptoms such as varying degrees of tremors, possibly having to go to bed for a sleep to regain energy and the occasional
light dizzynes and falls etc, your mum will retain the personality you love her for. My mum still makes me laugh, makes me cry, makes me happy, makes me sad and sometimes makes me angry. (lol)
We have some great health pages, you might like to read them, found just to the right of your screen and you'll find that most MS organisations have packages designed to help partners and children so they might be worth contacting. If you have any questions, any question at all, someone usually will have the answer for you or at least be able to point you in the right direction, so just ask away.
Cheers............JJ
All, I just copied this from the end of a very old thread about emotions. Something about this question has really touched me - perhaps it is because one of my son's best friends is named Mattson? But probably because I know all of us with MS have been at this point one time very early in this journey.
Mattson,
First of all, please put aside whatever image you have of us with MS, because the odds are you have imagined the worse possible situation for your wife and your family.
Gone are the days of most of us ending up in wheelchairs because of our MS. 20 some years ago there was no treatment for MS and today there are many, with even more in the pipeline. True, these are not a cure for MS, but it certainly can and usually does slow the progression of this MiSerable disease.
Each person's case of MS is totally different than the next person's because it is just a MySterious disease that has no particular pattern. Don't let your wife or you be sucked into hearing about what so-and-so's MS has done to them. Everyone you encounter will have an aunt or neighbor or coworker who has MS and they will want to tell you the worst. It's much like the women who wanted to tell your wife about the horrible things about childbirth :-)
My children were adults before I was diagnosed, so I don't have first hand experience that I can share but there are many young parents here who have children who have adjusted to the special needs of their mom or dad.
This is a great bunch of people who will be happy to share their experiences, answer your questions, or just listen to your concerns and questions. I hope you and your wife will come here often and spend some time with us.
Gentle hugs to you both as you try to digest this news and find your way on this part of the journey.
Lulu
Mattson,
First of all, please put aside whatever image you have of us with MS, because the odds are you have imagined the worse possible situation for your wife and your family.
Gone are the days of most of us ending up in wheelchairs because of our MS. 20 some years ago there was no treatment for MS and today there are many, with even more in the pipeline. True, these are not a cure for MS, but it certainly can and usually does slow the progression of this MiSerable disease.
Each person's case of MS is totally different than the next person's because it is just a MySterious disease that has no particular pattern. Don't let your wife or you be sucked into hearing about what so-and-so's MS has done to them. Everyone you encounter will have an aunt or neighbor or coworker who has MS and they will want to tell you the worst. It's much like the women who wanted to tell your wife about the horrible things about childbirth :-)
My children were adults before I was diagnosed, so I don't have first hand experience that I can share but there are many young parents here who have children who have adjusted to the special needs of their mom or dad.
This is a great bunch of people who will be happy to share their experiences, answer your questions, or just listen to your concerns and questions. I hope you and your wife will come here often and spend some time with us.
Gentle hugs to you both as you try to digest this news and find your way on this part of the journey.
Lulu
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