Tonight my daughter asked me a really off the wall question. She had driven with me to pickup a donation for the children's home and we were heading back home when she asked, "dad, is mom going to die soon?" Now, my daughter is 14 years old and my wife was diagnosed years before she was even born, so she hasn't ever known a time before my wife had ms. She totally took me off guard when she asked because we weren't even talking about my wife or anything to do with MS.
This is a question I had asked Dr. Swank when we used to visit him yearly. When we visited with him, I would bombard him with questions because I wanted to know as much as possible about Multiple Sclerosis. When I asked Dr. Swank about life expectancy he quickly told me that most MS patients lived a long life. He even said that in his research, 85% of his patients that were following the MS diet lived a full life with limited MS issues. What I've personally seen is MS doesn't lessen the amount of years you live, but it can lessen your ability to live those years.
I quickly answered my daughter and let her know that her mom wasn't going to die soon from her MS, and that is not the way Multiple Sclerosis affected the body. Then she asked me what we would do if my wife went completely numb, and I assured her that we would do everything possible for my wife to live a long, healthy life. It reminded me today that we need to be discussing MS with my daughter as she gets older so she understands it and doesn't fear it. It is so important to discuss MS with your family and especially with your children, and to understand the effects of MS well enough to discuss it. If you have any questions I can answer please let me know.
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28 comments:
Please help me. I love my wife and she hates life. She is miserable. what can I do to help her.
I totally understand where your coming from. Sadly, in my experience my fiance Tim who has MS has been through so many ups and downs and his family hasn't been much help. His mom is in such denial and his son from his previous marriage just stays away. I'm well aware of the education of MS and how important it is. Kudos to you and it's so refreshing to read of the positiveness you show towards your wife's MS.
Personally, I feel the same the way I love Tim and no matter what I will stand by him. His negative outlook is rough at times but I always remind him how far he has come with the help of his IV treatment of tysabri. When we first met he had so many troubles plus his neurologists wasn't familiar with MS and that caused him to spiral til he couldn't walk.
Since then thanks to the MS society he found the right doctors and is doing a whole lot better. He still walks like a toddler sometimes but has a walker and spends less time in the wheelchair. Now we just need a portal chair that can fit in our pt cruiser then we will be cruising more. Anyways I like your blog and now your giving me the idea to share my stories and life with Tim:)
Thank you and God Bless you:)
I found this blog on a "bad day" my wife was having, and while I've been reading, this is my first comment.
When the whole world of MS forced itself upon us, I read everything, and asked every imaginable question. We had a very short window of opportunity to get with a reputable neurologist, but I feel like have been blessed to find the one we felt most comfortable with.
The side effects of the medication sometimes seem worse than MS itself, add to that everyone being different in how their body reacts to both the disease, and the modifiers, and you've got no clear cut answers. If nothing they are doing for your wife is helping perhaps your situation is similar to the one Hearty612 is describing, and another neurologists approach may be a worthwhile endeavor.
A positive attitude is a must, even as challenging as it seems, and I'm the worst at it. Fortunately my wife on the other hand is much more positive, and that along aggressive treatment is what I believe is keeping her going full steam ahead.
We have two boys 9 and 7 and I was diagnosed 9 years ago. This winter was rough and I was the sickest I have ever been and was bed ridden for most of Jan and feb. and into march. I have started Chemo and this has been rough on our family. We have talked to our kids about everything. We don't want to hide things from them and they were really scared at the beginning of the winter when I go super sick. We are trying to take each day one day at a time.
I just found your blog today and I am so grateful, yours wifes symptoms are so similar to mine, I read a bunch of the stuff to my husband and completely agreed.
Thanks so much for all your information!!!
Hi tthurman, thanks for the encouragement. I hope your wife is doing well.
hi cory ,
i am glad i found this blog .
My sister is diagnosed with MS on March 27, 2012.
She currently staying with me . I really need a guidance on how to help my sister dealing with the problem . I'm afraid she is going into depression , but even more afraid to realized that it will affect my life also . I really want to help her . need some advice .
Hi Precious, I'm sorry to hear about your sister. Depression is a tough thing to deal with, and I know my wife has gone through times where she is just overwhelmed. Shoot me any email at mywifehasms@gmail.com and we can talk about what all we do and maybe some of those suggestions can help you.
The Precious,
You are currently faced, at least in my opinion, with the most difficult time. I struggled with the uncertainty of this almost as much as my wife, and likely, not as well at times.
The neurologist immediately prescribed a very small dosage of Lexapro, which I questioned, but I'm no Dr. It certainly seemed to stop any downward spiral of the flood of emotions that occurs. I don't have the words to describe this, but at the same time I can tell you the "calming" effect it had seemed extremely beneficial to her. Again, this isn't something I have any expertise in, but is something to consider, and her Dr. will almost certainly know what's best. Acceptance is so very, very difficult for everyone touched by this disease. but it's the first step to dealing with it.
Early on especially, I attended every visit to the neurologist, MRI, everything, and you too may find this beneficial, I know I did! There is a great support cast out there for people dealing with what you and your sister are going through, including places like this blog. Use them to their fullest, in the end it helps everyone!
Hi, I just stumbled across your blog and I'm just by your dedication to the blog and your wife. I just want to thank you for posting so much information and sharing your experiences with everyone. I was recently diagnosed with MS, though I've had symptoms for years, and am working to find more info. I'll be following your blog! Thanks again, and hope you are both doing well.
Honestly I hate to hear that for your family.MS is hard to deal with! Having to deal with it for a long time! Hoping for a mirical! If you you know any treatments or any at home remadies please suggests
Hello Sir
Iam 26yrs old lady.I have a small family i.e me my husband & my son.
My neurologist made me desp as he told me i have MS.I just cant understand what should i do & where should i go.I stay in uae but neuro told me to start with weekly injections to reduce my symptoms.Is this injections safe? thw most thing is that i didn't hear the name of that drug as i was shocked when he told me i have MS.Iam also awaiting my blood reports once it is arrivd he would start the treatment.Can you please help me to make my mind positive?
Shyni
Hi Shyni, I'm sorry things have been so confusing and totally understand the stress of finding out you've been diagnosed with MS. I can't speak to the injections because we have chosen to treat my wife's MS naturally. One of the main suggestions I would have is to educate yourself so that you know what and how MS is affecting your body. I know that when you are in the middle of the mess that it's hard to see the light, but I know our experience has been that MS can be controlled so you can live a normal life. Shoot me any specific questions you have at mywifehasms@gmail.com.
Hi I have been diagnosed with MS for about 5 years. My husband and 2 children are very supportive as well as my family. I have been on several injections and nothing seems to work. I work full time but have to go out on disability. I have done therapy which seems to help a little. If anyone has any ideas please let me know.
Im 22, soon to be 23. I was diagnosed in May 2012. I had been suffering for about a week of when I touched anything (air included) my whole right side would feel hot and the more the touch or pressure was there the hotter it got. I went to my normal doctor and he looked me right in the face and said that he was sending me to a neurologist. That was scary, but the doctor he sent me to was amazing. she was very straight forward and honest. She gave me a small list of things it could be, but that MS was most likely. She got me in a few days later to have a MRI. The results came in that afternoon and they were that I had 40-60 past 'active' lesions and 4 ( !! ) ongoing ones. So that afternoon she had me admitted into our local hospital (which the Dean of it has MS) and I had the spinal tap test done, as well as probably every blood test known to man. I had a 3 day steroid injection done and was released after a week and a half when all the tests came back in. My doctor pushed for all of my test results to be done ASAP. She said that normally it takes years to be officially diagnosed but after 2 weeks she said that she could confirm that I had MS. Its been about a year now and I suffer from little 'relapses' about once a week sometimes once every 2 weeks. Accepting it, for me, has been pretty easy. Im the type of person that if something happens thats out of my control I try not to stress over it. I've found that on the bad days, and here will be bad days, that if I just think about all the good things I have, my son, my fiance, my family, then it does make things a bit eaiser. Personally I do need a reminder of these things so for those who are living with someone with MS and they are suffering with being depressed, try bringing up a good memory or something that you both find really funny. Maybe, if they can, do a date night. Get a small gift, take them to dinner, or get some take out that you dont get often, light some candles, whatever works for you. It might not seem like it helps, but sometimes we cant show how much it really does. A lot of the time when you have MS you dont feel human at times. You feel like everyone is looking at you, watching you. It can be more frustrating then the fact that you cant hold a pen sometimes and you have some new odd thing that your body is doing.
Kayla, thanks for sharing and reminding all of us about the good things in life.
Hi, my hubby was diagnosed with progressive MS in 2010. Actually they did an MRI on him for something else and found the brain leissions. So off we go,more test,injections that made him so sick ,we decided to stop. Ms meetings , reading, etc. Now here I am, it's 4:00am, I can't sleep. My husband has been going from his recliner to the bed and back since Sunday morning. Sleeping. This happens quite often. He may stay up for an hour to eat, maybe take a shower, then back to sleep. I've read about the fatigue but I never dreamed it would be this bad. Even worse is his mood. I want to be here for him, I want him to talk to me and tell me how I can help....but he will hardly say anything at all. He's like someone I don't even know any more. I came across this blog while I was trying to find yet another doctor for him. I do agree the first two drs were bad experiences, but he can't not like ANY of them. I pray that the next dr will at least address his fatigue. I'm almost certain the down mood is from the fatigue, and from sleeping so much because of it. Anyway I want to tell you how awesome the support you give your wife and family is. Any advice you can share would be really appreciated.
Hi Anonymous, I'm really sorry to hear about your husband. I know after my wife's diagnosis that she moved back in with her family and spent about 9 months sleeping, changing her diet to the Swank MS Diet, trying to overcome the fatigue/depression and just trying to figure out this new challenge. I met her after she had been back to work and living on her own again, but she was still very fatigued and had to build her life around resting and taking care of herself. There's not enough room in this comment to really get into everything so if you are interested in knowing more please shoot me an email at mywifehasms@gmail.com and I can answer any questions you have.
I am now 26 and my dad has had MS since I was a baby. My parents never explained it to me growing up and that was also before the time when the internet was so widely available. Although I never had problems understanding or accepting the physical impacts it had on my dad, I never understood the emotional damage it can do to both the sufferer and their partner. In particular, I did not understand the concept of depression or how the drugs and the condition would affect my dad's moods. Had my parents spoken more honestly with me when I was younger, I feel that many, many of the family arguments we had, the tears, the slamming of doors, would have been avoided. Instead, I just saw my dad as a moody, horrible person without understanding what he was going through.
I would certainly encourage parents to be as open and honest about the condition, and its mental health effects, with their children.
Thank you for your blog. I hope the information you are providing is of help to others affected by this unfair disease.
Anonymous, thanks for the comment. I agree that it's really important to talk with your kids. Our daughter struggles to understand at times, but we have been open and honest with how my wife's MS affects her and our family. Thanks for sharing from your perspective because it's a great reminder for parents that MS affects the whole family.
Great comments from everyone...Glad to see people do really care out there :)
MY grandmother, which I love dearly and have had such a close bond with has been suffering with MS for about 18 years. She is in her final stages of MS, as she is bedridden and losing her ability to use her one functional hand. She has been developing depression in the past year, having suicidal thoughts. I am only 15 and I've witnessed her struggle from an early age of 7 as my mother was her caretaker. Sadly, as things worsened, my mom was unable to take care of her 7 days a week. Her travel from several convalescent hospitals has been stressful and has taken a toll on my mother and I. Seeing her go through MS has made me want to study to become neurologist. I sometimes wish for a miracle for her to walk again, to spend time with her like I used to as a kid, to see her happy and alive. MS has taken such a toll on my family, but it has made me a stronger person. My grandma told me that the only reason she is alive is because of how strong she is mentally. And being surrounded by the people who love you, gives you strength to hold on for one more day, and that's what my grandmas does.
I was diagnosed with relapse remitting MS over 7 years ago. After 2 types of injections, I am now on a pill called GILENYA. My neurologist is pleased with the results. I have hand and feet pain but function well overall. I am hoping that the new drugs keep becoming available.. I am grateful that there is a medication for without the side effects.
I just recently had a lumbar puncture and am waiting for a diagnosis. Everything I have read points to MS and I am afraid of how my life will possibly change. I am very independent and full of energy. This is really scary. Do you have any suggestions for me to prepare myself in the event that I do get MS as a diagnosis?
Cynthia
Hi Cynthia, life will be different with MS but it doesn't have to take your life away. I know for my wife that when she was diagnosed she learned quickly that she had to change her expectations of life and her body or she would be very stressed and disappointed. We have decided to live life to the fullest with the limitations that MS places on my wife by choosing to live differently. Let me know about the diagnosis and if you have any questions please ask. Maybe something that we have experienced will help you.
Thanks Cory for the response. The DX was MS. My husband has been every patient and supportive. I have found that what sticks out for me the most is that I find myself to be tired more than usual. I have been on an emotional roller coaster but expect to level out soon. I have done a good amount of reading and now I'm working to get my family educated. I will introduce my husband to your blog.
We just found out yesterday that my little sister has MS. after 2 doctors misdiagnosed her we have now got clarity about her illness. I was not so sure about what this illness was all about until I went crazy reading up about it on the internet.
I don't think she knows what its all about as my parents don't want to upset her.
I am really stressed out and worried about the unknown. I wish that I could take it upon myself and spare her the pain and suffering.
Thank you for this great blog. Just told my mom about it.. good luck to all and God bless...
Hi Anita, sorry to hear about your sister. Diagnosis can be a very frustrating journey, but I'm glad they have finally called it MS. I know for my wife that Dr. Swank sat her down and was just real with her that most, 85% according to Swank, of MS patients live a very normal life. He also told her positive things about having children and living a full life, and helped her to see that it was going to be OK. Now, 22+ years later and she is still living life and we are moving to Colorado so we can ski and enjoy the outdoors. Please let me know if you have any questions because we are an open book. You can email me directly at mywifehasms@gmail.com.
My mom has been diagnosed with ms over a month ago. My dad and my brother are both unreliable when it comes to anything. My mom stumbles around like shes been drinking and falls more than five times a day. My mom used to be a alcoholic and because of that her liver barely functions. So treatment options are limited.. shes started her injections and her fatigue is scary. Her doctor said she may never drive again and i live 2 hours away. I dont know what to do or how to explain my moms behavior to my children. Im scared that i am going to lose her. Its only been a short period of time since she was diagnosed and her condition seems to have gotten worse so rapidly.
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