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Recent MS diagnosis
My 33 year old son-in-law was diagnosed last week with MS. He has 8 lesions, only 2 are active, only one causing eye disturbances. They are just about to close on their dream house (two story) and would like another child in the next year.
I need to know how I can be supportive to both of them without letting the disease become the central focus.
Is there good news out there? Can life be somewhat normal again?
I need to know how I can be supportive to both of them without letting the disease become the central focus.
Is there good news out there? Can life be somewhat normal again?
*bump* just means we want to keep your post up toward the top where other people, like me, will be sure to see it and possibly answer.
I second and third everything that has already been said about your compassion and willingness to learn more about the MiSerable disease.
One of the biggest things you can do is be available to listen - both your daughter and son-in-law will eventually want to talk and when that time comes so often many people have no one willing to stop and listen.
There have been tremendous advances in the treatment of MS in the past 20 years- we are no longer the stereotypical face in a wheelchair many people automatically associate with MS. Studies show the disease modifying drugs (DMDs) are very successful in slowing the progression of disability.
I'm thinking that latest Copaxone (one of the DMD's) 18 year study showed this year that over 80% of the people on it for that long continue to walk without assistance (no walker, no wheelchair). These DMDs aren't perfect, but they are our best shot to remain moving while scientists are busily searching for the cures.
This is one MySterious disease and as Alex pointed out, no two cases of MS are alike. We can't possibly know what tomorrow is going to bring to us so we have to stay in the present.
Your SIL and daughter need to have some time to adjust to this news - I won't say accept because most of us never accept this diagnosis. There's going to be a whole lot of grieving going on, worrying about things that will be lost, concerns for the future. That process is all normal. And everyone does it in their own way and on their own time schedule.
The new house sounds great! I live in a two story with a walkout lower level and manage the stairs day in and day out. I must admit I would prefer a one floor home especially when I'm hauling laundry up two levels, but this is what we got.
Please come around with any questions and you might encourage your SIL to do the same - you've already seen this is a great community with many caring people. We're here to help in any way we can.
be well, Lulu
I second and third everything that has already been said about your compassion and willingness to learn more about the MiSerable disease.
One of the biggest things you can do is be available to listen - both your daughter and son-in-law will eventually want to talk and when that time comes so often many people have no one willing to stop and listen.
There have been tremendous advances in the treatment of MS in the past 20 years- we are no longer the stereotypical face in a wheelchair many people automatically associate with MS. Studies show the disease modifying drugs (DMDs) are very successful in slowing the progression of disability.
I'm thinking that latest Copaxone (one of the DMD's) 18 year study showed this year that over 80% of the people on it for that long continue to walk without assistance (no walker, no wheelchair). These DMDs aren't perfect, but they are our best shot to remain moving while scientists are busily searching for the cures.
This is one MySterious disease and as Alex pointed out, no two cases of MS are alike. We can't possibly know what tomorrow is going to bring to us so we have to stay in the present.
Your SIL and daughter need to have some time to adjust to this news - I won't say accept because most of us never accept this diagnosis. There's going to be a whole lot of grieving going on, worrying about things that will be lost, concerns for the future. That process is all normal. And everyone does it in their own way and on their own time schedule.
The new house sounds great! I live in a two story with a walkout lower level and manage the stairs day in and day out. I must admit I would prefer a one floor home especially when I'm hauling laundry up two levels, but this is what we got.
Please come around with any questions and you might encourage your SIL to do the same - you've already seen this is a great community with many caring people. We're here to help in any way we can.
be well, Lulu
The fact that you are supportive is a good thing.MS acts differently in each person. If he has Relapsing Remitting MS and the Doctors get him on a Disease Modifying Drug, one of the injectables the chances of slowing the progression are very good. He may live a fairly normal life and continue his occupation until retirement or he may progress more rapidly. No one can say how the disease will go there really are no predictors.
MS is a disease of inflammation and nerve death. Inflammation comes and goes and with it symptoms. When nerve death occurs the symptoms are here to stay. You can't expect every bad aspect to occur, because it often does not. The reason we are all different is where the permanent damage takes place in the brain and spinal cord.
The MS Society has great literature for you to understand the disease as well as resources for your Son in law and daughter. They have a book for the newly diagnosed and financial planning information.
If nothing else this is an expensive disease and at his age he will have a lifetime of expenses.
Of course your son in law and daughter will need to make their own decisions about their future and should not be pressured by good intentions either way because they probably would balk at the pressure. Be supportive this is a big part of their life now. No one knows what the future holds. We are in hard times and this is an expensive disease even with insurance. Now most of us are tied to our jobs for the insurance. If he has long term care and life insurance that is good (MS does not kill you) because it is near impossible to get these after diagnosis.
Yes MS is a big part of our lives because of my health care costs and I can't do all the things I used to. My husband and I have accepted it and are very happy together.
Give the National MS Society a call.
Alex
MS is a disease of inflammation and nerve death. Inflammation comes and goes and with it symptoms. When nerve death occurs the symptoms are here to stay. You can't expect every bad aspect to occur, because it often does not. The reason we are all different is where the permanent damage takes place in the brain and spinal cord.
The MS Society has great literature for you to understand the disease as well as resources for your Son in law and daughter. They have a book for the newly diagnosed and financial planning information.
If nothing else this is an expensive disease and at his age he will have a lifetime of expenses.
Of course your son in law and daughter will need to make their own decisions about their future and should not be pressured by good intentions either way because they probably would balk at the pressure. Be supportive this is a big part of their life now. No one knows what the future holds. We are in hard times and this is an expensive disease even with insurance. Now most of us are tied to our jobs for the insurance. If he has long term care and life insurance that is good (MS does not kill you) because it is near impossible to get these after diagnosis.
Yes MS is a big part of our lives because of my health care costs and I can't do all the things I used to. My husband and I have accepted it and are very happy together.
Give the National MS Society a call.
Alex
Welcome to a great site for - I have been a member since Oct and find it's the best around for info and support. But I'm sorry you have had to come here.
What a great support you are going to be for your son-in-law. Your question shows great sensitivity and caring.
There is a lot of great info on-line regarding MS and if diagnosed early and treatment is started, the prognosis can be very favorable. Everyone is different, and it is difficult for long term prognosis. The health pages on this site are a good source as is the National MS Society.
There is a lot of research going on re MS, cause, treatments, etc. There is still much that is not known about this disease, but it seems like each day, new things are happening in this area. Just today my husband was reading about the stem cell research that is being done to remyelinate areas of the brain.
As to how you can be supportive to them - you already are by coming here and asking questions. By educating yourself about this disease, you will be able to understand what your son-in-law may be going through.
I think one of the most difficult things for someone with a chronic illness is a feeling of being alone - people not understanding. And, as you already know, it affects the whole family - all those who care about that person. So if you can be there to listen, and ask how you can help, that is wonderful. For me, knowing that someone cares means a lot. Then there are others who don't say anything - even acknowledge it - and that is the worst as far as I'm concerned.
There are days when I feel very good, and can do a lot, and other days when I'm tired and can't do much - that can be very frustrating - for me and my family - planning can be difficult - and I need to be a lot more "in the moment" than I am used to. Which actually is a very good thing.
One of the symptoms of MS is fatigue. Offering your help with any jobs around the house, taking kids so your daughter and son-in-law can have alone time - any thing that will give them some respite would help.
I hope that you are able to tell your son-in-law that you are there for him. Just that could open the door for him to be able to seek your help. Sometimes it's very hard to ask though.
This is the beginning of a journey - and who knows where it will lead, but with people who love and support, the journey can be much less scary.
My best to you and your family. By the way - you ask - can life be somewhat normal again? I think this disease teaches us patience, and we have to accept a new "normal" - and it's different for everyone. Sometimes the hardest things in life help us to become the best.
What a great support you are going to be for your son-in-law. Your question shows great sensitivity and caring.
There is a lot of great info on-line regarding MS and if diagnosed early and treatment is started, the prognosis can be very favorable. Everyone is different, and it is difficult for long term prognosis. The health pages on this site are a good source as is the National MS Society.
There is a lot of research going on re MS, cause, treatments, etc. There is still much that is not known about this disease, but it seems like each day, new things are happening in this area. Just today my husband was reading about the stem cell research that is being done to remyelinate areas of the brain.
As to how you can be supportive to them - you already are by coming here and asking questions. By educating yourself about this disease, you will be able to understand what your son-in-law may be going through.
I think one of the most difficult things for someone with a chronic illness is a feeling of being alone - people not understanding. And, as you already know, it affects the whole family - all those who care about that person. So if you can be there to listen, and ask how you can help, that is wonderful. For me, knowing that someone cares means a lot. Then there are others who don't say anything - even acknowledge it - and that is the worst as far as I'm concerned.
There are days when I feel very good, and can do a lot, and other days when I'm tired and can't do much - that can be very frustrating - for me and my family - planning can be difficult - and I need to be a lot more "in the moment" than I am used to. Which actually is a very good thing.
One of the symptoms of MS is fatigue. Offering your help with any jobs around the house, taking kids so your daughter and son-in-law can have alone time - any thing that will give them some respite would help.
I hope that you are able to tell your son-in-law that you are there for him. Just that could open the door for him to be able to seek your help. Sometimes it's very hard to ask though.
This is the beginning of a journey - and who knows where it will lead, but with people who love and support, the journey can be much less scary.
My best to you and your family. By the way - you ask - can life be somewhat normal again? I think this disease teaches us patience, and we have to accept a new "normal" - and it's different for everyone. Sometimes the hardest things in life help us to become the best.
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