Aa
Family Members Who dont Understand MS
Hi all,
I want to share an email I want to send to my family who does not live near me. While I have had MS for 1 year my aunt (whom we'll call Rita) has had it for 10yrs. I am so frustrated that no one helps her or understands. They know she's not ok but they dont understand her behaviour and refer to her as "crazy" and this is so not true. I admire her courage as a single mother with a successful career and awknoledge that her disease has sadIy and recently progressed. I have urged them to make an appointment and see her consultant and help her out even by educating themselves and understanding as none of them have bothered and I am sharing my email with you all because I believe so firmly in what I have written. So here goes. . . . I haven't sent it yet so if you think there is anything I should add or delete all advice is welcome,
Dear *&&^^%$
I have taken 2 hours of my time to research and write to you. Please take 5 minutes of your time to read. And before reading please understand that I am not for minute pretending I know what its like to have children, a hectic schedule, an important job, what its like to lose a spouse or go through a divorce: I HAVE NO IDEA. But if I can help - if there is anything i can do in return I will, I promise. Even if its just an ear to listen.
Secondly - I am going to email you with updates, not often and only when something new happens. My next one will be on trying arrange a family meeting with Ritas consultant and usefull questions to ask. You can delete that email but at least can sleep well knowing that I sent it and tried to encourage and prepare you. So here goes with post No.1
________________________________________________________________________________
I want to pass you on some information which may or may not help and which you may or may not know regarding MS in a simple form. There are now 2 members of your family living with the disease both Rita and I (and who knows who'll have it tomorrow, we never thought I would and i genuinly hope no one else does)....
I am so sorry but I dont think we as a family have educated or united ourselves enough to understand what MS is or what it is like to have it. I have been equally guilty for this until my own diagnosis. I did do a bit of internet surfing when Rita was diagnosed - but I confess I never did enough to fully understand what she must be going through, only the basics and i suspect that no one else has either, appologies if i am worng.
So in simple terms:
Due to MS our brains now have lesions - lesions which effect the way we think, the way our body moves and the way we perceive things - and its very scary. The worst part for me has been not knowing what lies ahead i.e. How will I be in 5, 10, 20 years...... I have no control whatsoever over my eventual outcome. Try to imagine it...... for your children, for your future, for your partner, for your career.
I remember my 1st attack trying to catch a peice of Kleenex (through the vision of one eye) and looking at it telling my brain to grab it - but my fingers just wouldn't move: even to grab something so delicate. I cried. I couldn't go to the bathroom, I cried. I couldn't lift my legs high enough to climb the hospital stairs, I cried. My 3 bestfriends came to visit me and when I said I wanted a cigarette one of them asked me where they could get a wheelchair for me and even though I joked and said "not a hope I'll race you", later I cried because actually it pyhsically took everything out of me but did my best to walk so that i wouldn't have to go into one.
There are various parts of the brain and spinal cord which are effected by what is called T2 and T1 lesions seen on MRI scans THIS IS IMPORTANT. I have T2 lesions (a lot of them, which are large and scattered). Up until recently Ritas have been similar. However in her most recent MRI (March 2010) there were T1 lesions, which are more serious! I have listed the difference below.
See definition:
T2: Classic MS lesion. This is the lesion that is most associated with the "Relapses" in the disease. MS does its damage by causing the nerves in localized areas in the brain and spinal cord to lose their protective sheaths, called myelin. The body attempts to repair the damage that is being done and sometimes these areas try to re-myelinate, with varying success. They aren't perfect in their function, but the areas may return to a normal appearance.
T1: If the nerves do not re-myelinate and the damage continues, for a long time the lesions sit as scars. If the attack on the myelin sheath is too strong for the immune system to repair, more and more myelin disappears and the area of nerves eventually dies. After a longer time the scar can reabsorb completely and the area becomes "empty." It's called a black hole. Function is lost here and cannot be regained, hence disabilty.
Because Rita now has T1 disease involvment I suspect her cognitive dysfunction has been effected topped with years of what I said has a profound effect psycologically: what will happen to me..... my spouse, my children my career etc. So to try and understand what is going on I have gotten a good explination on "cognitive dysfunction and MS" and pasted it below. (Not shown here in this post)
I have attached a link for the MS society Canada. The MS society is a great source of information. There are so many new things happening in treatment of MS - Not just what you happen to "catch" on W5 in the evening. And membership is only $ 15 dollars.
http://www.mssociety.ca/chapters/toronto/membership.htm
Benefits of membership include:
MetroScope (Toronto Chapter's newsletter)
Mailings about upcoming events, information, etc.
Referral & counselling
National & Ontario Division MS newsletters
Self-help Groups
Access to Equipment & Home Help And much more...
Reduced rate at certain education and social events.
Receive your division newsletter
Receive your local chapter newsletter
Receive MS Canada, the national newsletter, four times per year
Receive the Social Action Update twice per year
Have access to MS Society programs
Have access to the MS Society resource library
I want to share an email I want to send to my family who does not live near me. While I have had MS for 1 year my aunt (whom we'll call Rita) has had it for 10yrs. I am so frustrated that no one helps her or understands. They know she's not ok but they dont understand her behaviour and refer to her as "crazy" and this is so not true. I admire her courage as a single mother with a successful career and awknoledge that her disease has sadIy and recently progressed. I have urged them to make an appointment and see her consultant and help her out even by educating themselves and understanding as none of them have bothered and I am sharing my email with you all because I believe so firmly in what I have written. So here goes. . . . I haven't sent it yet so if you think there is anything I should add or delete all advice is welcome,
Dear *&&^^%$
I have taken 2 hours of my time to research and write to you. Please take 5 minutes of your time to read. And before reading please understand that I am not for minute pretending I know what its like to have children, a hectic schedule, an important job, what its like to lose a spouse or go through a divorce: I HAVE NO IDEA. But if I can help - if there is anything i can do in return I will, I promise. Even if its just an ear to listen.
Secondly - I am going to email you with updates, not often and only when something new happens. My next one will be on trying arrange a family meeting with Ritas consultant and usefull questions to ask. You can delete that email but at least can sleep well knowing that I sent it and tried to encourage and prepare you. So here goes with post No.1
________________________________________________________________________________
I want to pass you on some information which may or may not help and which you may or may not know regarding MS in a simple form. There are now 2 members of your family living with the disease both Rita and I (and who knows who'll have it tomorrow, we never thought I would and i genuinly hope no one else does)....
I am so sorry but I dont think we as a family have educated or united ourselves enough to understand what MS is or what it is like to have it. I have been equally guilty for this until my own diagnosis. I did do a bit of internet surfing when Rita was diagnosed - but I confess I never did enough to fully understand what she must be going through, only the basics and i suspect that no one else has either, appologies if i am worng.
So in simple terms:
Due to MS our brains now have lesions - lesions which effect the way we think, the way our body moves and the way we perceive things - and its very scary. The worst part for me has been not knowing what lies ahead i.e. How will I be in 5, 10, 20 years...... I have no control whatsoever over my eventual outcome. Try to imagine it...... for your children, for your future, for your partner, for your career.
I remember my 1st attack trying to catch a peice of Kleenex (through the vision of one eye) and looking at it telling my brain to grab it - but my fingers just wouldn't move: even to grab something so delicate. I cried. I couldn't go to the bathroom, I cried. I couldn't lift my legs high enough to climb the hospital stairs, I cried. My 3 bestfriends came to visit me and when I said I wanted a cigarette one of them asked me where they could get a wheelchair for me and even though I joked and said "not a hope I'll race you", later I cried because actually it pyhsically took everything out of me but did my best to walk so that i wouldn't have to go into one.
There are various parts of the brain and spinal cord which are effected by what is called T2 and T1 lesions seen on MRI scans THIS IS IMPORTANT. I have T2 lesions (a lot of them, which are large and scattered). Up until recently Ritas have been similar. However in her most recent MRI (March 2010) there were T1 lesions, which are more serious! I have listed the difference below.
See definition:
T2: Classic MS lesion. This is the lesion that is most associated with the "Relapses" in the disease. MS does its damage by causing the nerves in localized areas in the brain and spinal cord to lose their protective sheaths, called myelin. The body attempts to repair the damage that is being done and sometimes these areas try to re-myelinate, with varying success. They aren't perfect in their function, but the areas may return to a normal appearance.
T1: If the nerves do not re-myelinate and the damage continues, for a long time the lesions sit as scars. If the attack on the myelin sheath is too strong for the immune system to repair, more and more myelin disappears and the area of nerves eventually dies. After a longer time the scar can reabsorb completely and the area becomes "empty." It's called a black hole. Function is lost here and cannot be regained, hence disabilty.
Because Rita now has T1 disease involvment I suspect her cognitive dysfunction has been effected topped with years of what I said has a profound effect psycologically: what will happen to me..... my spouse, my children my career etc. So to try and understand what is going on I have gotten a good explination on "cognitive dysfunction and MS" and pasted it below. (Not shown here in this post)
I have attached a link for the MS society Canada. The MS society is a great source of information. There are so many new things happening in treatment of MS - Not just what you happen to "catch" on W5 in the evening. And membership is only $ 15 dollars.
http://www.mssociety.ca/chapters/toronto/membership.htm
Benefits of membership include:
MetroScope (Toronto Chapter's newsletter)
Mailings about upcoming events, information, etc.
Referral & counselling
National & Ontario Division MS newsletters
Self-help Groups
Access to Equipment & Home Help And much more...
Reduced rate at certain education and social events.
Receive your division newsletter
Receive your local chapter newsletter
Receive MS Canada, the national newsletter, four times per year
Receive the Social Action Update twice per year
Have access to MS Society programs
Have access to the MS Society resource library
Thanks for your letter and insights. So many of my family members and friends have NO CLUE what I or any of my MS friends may be going through. There are moments I want to grab them by the neck and scream "you don't have the foggiest freakin' idea how I feel!" I'm learning, though. They really DON'T have any idea. I'm learning to choose my battles, and write off the inconsiderate things they say. I'm where I am today, right now.
Thanks again,
Guitar_grrrl
Thanks again,
Guitar_grrrl
Tomorrow's second sermon in my present series (Mothers' Day through Fathers' Day, here in the US) begins to address the definition of "family." This thread will provide a good bit of information for next week, as we follow up on the variables.
God bless you, Sharon. Take the advice in the above posts to heart. It remains true that we catch more flies with honey than with vinegar. I'll pray your efforts prove fruitful for the sake of your entire family.
God bless you, Sharon. Take the advice in the above posts to heart. It remains true that we catch more flies with honey than with vinegar. I'll pray your efforts prove fruitful for the sake of your entire family.
Thank you for your honesty and helpful post. I had never understood the difference about T1 and T2 lesions so you have enabled me to understand my 2nd MRI scan which showed T2 lesions and led to my dx.
I wish you success and think that you should listen to your inner voice and heart and follow the best course of action that you feel is right for you, Rita and the family. trust your own judgment.
with love Sarah x :)
I wish you success and think that you should listen to your inner voice and heart and follow the best course of action that you feel is right for you, Rita and the family. trust your own judgment.
with love Sarah x :)
Sharon:
I applaud your efforts to advocate on behalf of your aunt and yourself. At the same time, I tend to agree with JJ. The overall tone tends towards being negative (I can sense your disappointment and frustration) and might just backfire by putting family members on the defensive.
I've been trying to find a brochure on MS that might be helpful; as I was reading them, it struck me that you know your family members and what might have more of an impact on them. Some brochures are quite long and technical, while others are short.
With a brochure, you could write a letter saying saying something to the effect that you have been recently diagnosed and it got you thinking about your aunt and everything that she has gone through now that you know more about the disease. You might then reference the brochure as a source of information for them and be open to answering any questions they might have, as well as talking about your concerns for both your aunt, with her deteriorating conditions as well as concerns for yourself. You say that your own parents are supportive of you and they may be a good sounding board in terms of your concerns/approach towards your aunt's family.
I can understand your disappointment and concern. Not all famiilies are willing to address problems face on and sometimes the "ostrich in the sand" approach is the way that families deal with things.
It's a sticky wicket, one that deserves careful consideration in approach. I hope that you find one that brings about the desired results.
Audrey
I applaud your efforts to advocate on behalf of your aunt and yourself. At the same time, I tend to agree with JJ. The overall tone tends towards being negative (I can sense your disappointment and frustration) and might just backfire by putting family members on the defensive.
I've been trying to find a brochure on MS that might be helpful; as I was reading them, it struck me that you know your family members and what might have more of an impact on them. Some brochures are quite long and technical, while others are short.
With a brochure, you could write a letter saying saying something to the effect that you have been recently diagnosed and it got you thinking about your aunt and everything that she has gone through now that you know more about the disease. You might then reference the brochure as a source of information for them and be open to answering any questions they might have, as well as talking about your concerns for both your aunt, with her deteriorating conditions as well as concerns for yourself. You say that your own parents are supportive of you and they may be a good sounding board in terms of your concerns/approach towards your aunt's family.
I can understand your disappointment and concern. Not all famiilies are willing to address problems face on and sometimes the "ostrich in the sand" approach is the way that families deal with things.
It's a sticky wicket, one that deserves careful consideration in approach. I hope that you find one that brings about the desired results.
Audrey
Hi Sharon
I read your post and felt like weeping...so I wanted to send you big hugs and best thoughts for every success.
I think you've raised a major issue that is most often overlooked or hidden, that's courageous of you - thank you.
My family were just the same when I suddenly got ill and never quite recovered. It makes you so sad and so disappointed, especially when you know you wouldn't be so dismissive or uncaring if the boot were on the other foot.
I've written 'that' letter/email too. It made not a blind bit of difference to my family members and I wonder if it actually made things worse - simply by highlighting their lacks, which they were uncomfortable with.
Since then I've had several years and lots of spare time to think about my family members' unthinking callousness (let's call it for what it is!). It seems to me now that maybe the majority of people can't handle illness and the fact that others have needs (not even too many doctors and nurses in my experience). Also, perhaps it's something to do with what we each expect from family members - often the roles are so rigid (e.g. I'm a capable, responsible mum and daughter/sister, therefore I 'can't be ill' - thus have been severely castigated for not performing to rigid expectations...)
The good news for me is that, since then, I've made a number of wonderful, kind and caring and very good friends from amongst those who have similar diseases and problems. I get more loving, emotional support from my friends in one day than I ever did in a month of Sundays from my family (and I hope I give equally too - we humans have a need to care and make a positive difference to others' lives too...!)
I know what you're going through is so frustrating and painful though...you have to do what you feel is necessary - then bless your folks and leave them to it if they can't support you on your rocky road...IMHO, for what it's worth.
best of everything and hugs
sammxx
I read your post and felt like weeping...so I wanted to send you big hugs and best thoughts for every success.
I think you've raised a major issue that is most often overlooked or hidden, that's courageous of you - thank you.
My family were just the same when I suddenly got ill and never quite recovered. It makes you so sad and so disappointed, especially when you know you wouldn't be so dismissive or uncaring if the boot were on the other foot.
I've written 'that' letter/email too. It made not a blind bit of difference to my family members and I wonder if it actually made things worse - simply by highlighting their lacks, which they were uncomfortable with.
Since then I've had several years and lots of spare time to think about my family members' unthinking callousness (let's call it for what it is!). It seems to me now that maybe the majority of people can't handle illness and the fact that others have needs (not even too many doctors and nurses in my experience). Also, perhaps it's something to do with what we each expect from family members - often the roles are so rigid (e.g. I'm a capable, responsible mum and daughter/sister, therefore I 'can't be ill' - thus have been severely castigated for not performing to rigid expectations...)
The good news for me is that, since then, I've made a number of wonderful, kind and caring and very good friends from amongst those who have similar diseases and problems. I get more loving, emotional support from my friends in one day than I ever did in a month of Sundays from my family (and I hope I give equally too - we humans have a need to care and make a positive difference to others' lives too...!)
I know what you're going through is so frustrating and painful though...you have to do what you feel is necessary - then bless your folks and leave them to it if they can't support you on your rocky road...IMHO, for what it's worth.
best of everything and hugs
sammxx
i don't even want to discuss this. guess that tells you how i feel about it and my family.
I wanted to take the time to Thank you for sharing your story with us :)
I also wanted to say that My Aunt also has MS.....So, like you....It is the two of us, affected w/ this disease. (Aunt and Niece)
Just curious, is it your mom's sister or your father's sister?
My Aunt is my Mother's sister. Thank you for reposting the definitions also, as newby's as well as us older members forget (like me :0 ) or need to be reminded how the lesion stuff works.
Have A Great Weekend,
~Tonya
COMMUNITY LEADER
Hey Sharon,
I commend your intentions to help your Aunt but (sorry there is a but) as soon as i started reading, i was thinking about how negative this could be perceived, even though that is NOT your intent. In my thinking, it would take an unusual individual to not feel guilty and neglectful after getting this type of letter.
Unfortunately though, human nature will dictate how people will react to this emotion. Some people will get angry at you, and not them selves, some may be thankfull and make an effort, others will do and say nothing, like it never happened. It is also entirely possible that your Aunt will also be affected by your letter, will she be happy or upset?
I think it might be less problematic for your Aunt, who is the one who will reap the concequences, (either good or bad) if you sent a letter to the individual who you think is more likely to respond favourably. Though i would make it more from a personal perspective, your concern for your Aunt and because of your own dx of MS, your understanding of the type of help she might need. Ask if she has any help and how, as a family we can all band together so she knows we understand what she's going through.
If the reaction is favourable, sending information you've found or been given to help your family understand MS, the aim would be one step at a time, thought you might like......a soft approach, that is much harder to ignore or perceive negatively.
My 2 cents, i'm sure it would of been upsetting to hear and see ignorance, unfortunately some people would rather not know the truth, to know the truth is to accept your own flaws.
Cheers.....JJ
I commend your intentions to help your Aunt but (sorry there is a but) as soon as i started reading, i was thinking about how negative this could be perceived, even though that is NOT your intent. In my thinking, it would take an unusual individual to not feel guilty and neglectful after getting this type of letter.
Unfortunately though, human nature will dictate how people will react to this emotion. Some people will get angry at you, and not them selves, some may be thankfull and make an effort, others will do and say nothing, like it never happened. It is also entirely possible that your Aunt will also be affected by your letter, will she be happy or upset?
I think it might be less problematic for your Aunt, who is the one who will reap the concequences, (either good or bad) if you sent a letter to the individual who you think is more likely to respond favourably. Though i would make it more from a personal perspective, your concern for your Aunt and because of your own dx of MS, your understanding of the type of help she might need. Ask if she has any help and how, as a family we can all band together so she knows we understand what she's going through.
If the reaction is favourable, sending information you've found or been given to help your family understand MS, the aim would be one step at a time, thought you might like......a soft approach, that is much harder to ignore or perceive negatively.
My 2 cents, i'm sure it would of been upsetting to hear and see ignorance, unfortunately some people would rather not know the truth, to know the truth is to accept your own flaws.
Cheers.....JJ
I really feel for you, over this past year plus only two friends outside our family knows what I've been going thru- after the first few MRI'S the Dr's thought maybe a brain tumor.
My wife & I together agreed not to tell any family over this course if time, we want to tell our two son's first, and in person this summer when we expect them home. My son's are both in the Army & we worry more for them and their families than about this disease.
I've read so much helpful information on this forum, so now that I have the Dx & I've make loads of friends here I feel like I can explain this chronic disease them with in detail.
they won't have to fear this MS & the side affects.
Just as this MS effects each of us in a different manner, I would assume that each person my digest the information differently also.
Regardless of how they receive the news from you, we all must find our own rainbow each day, if it's taking an extra step without a cane, or pushing away from the wrong food or maybe not complaining about our illness. Be positive..
I guess what I'm tying to say is , try to find what makes you happy each day no matter what others think.. or how small it may seem, It's just like watching the news- how much time do they dedicate to positive stories?
I've read some where in this forum, I have MS, but MS doesn't have me..
We are just an example of how a bad illness affects good people- show them your positive side... be positive for yourself first.
I wish you the best,
John..
My wife & I together agreed not to tell any family over this course if time, we want to tell our two son's first, and in person this summer when we expect them home. My son's are both in the Army & we worry more for them and their families than about this disease.
I've read so much helpful information on this forum, so now that I have the Dx & I've make loads of friends here I feel like I can explain this chronic disease them with in detail.
they won't have to fear this MS & the side affects.
Just as this MS effects each of us in a different manner, I would assume that each person my digest the information differently also.
Regardless of how they receive the news from you, we all must find our own rainbow each day, if it's taking an extra step without a cane, or pushing away from the wrong food or maybe not complaining about our illness. Be positive..
I guess what I'm tying to say is , try to find what makes you happy each day no matter what others think.. or how small it may seem, It's just like watching the news- how much time do they dedicate to positive stories?
I've read some where in this forum, I have MS, but MS doesn't have me..
We are just an example of how a bad illness affects good people- show them your positive side... be positive for yourself first.
I wish you the best,
John..
Thanks LuLu - I have no complaints I have been doing so well. Feel great and keeping positive.
I'm just back from a holiday to see my family in Canada and was disgusted with my Aunts and Uncles lack of understanding or compassion in relation to my aunts difficulties with her MS, It was horrible to see. I have been blessed with my own parents and siblings whom are all members of the MS society and even have sisters who have presented projects on MS in College and Secondary School. My boyfriend and his family along with my own have all met and spoken with my consultant privatley and I was comfortable with that and fortunate enough that they wanted to. I just wish I could promote the same attitude for my aunt and her siblings with all of whom I am very close to......
Sharon
I'm just back from a holiday to see my family in Canada and was disgusted with my Aunts and Uncles lack of understanding or compassion in relation to my aunts difficulties with her MS, It was horrible to see. I have been blessed with my own parents and siblings whom are all members of the MS society and even have sisters who have presented projects on MS in College and Secondary School. My boyfriend and his family along with my own have all met and spoken with my consultant privatley and I was comfortable with that and fortunate enough that they wanted to. I just wish I could promote the same attitude for my aunt and her siblings with all of whom I am very close to......
Sharon
Oh, I also want to remind you that just because Rita has these problems this isnot necessarily your future. Don't take on her condition as your own, because we all are unique with MS.
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