MS: The Third Wheel in Our Marriage

As I helped my husband, Norm, out of bed, I couldn’t help but think to myself: how did we get here?
 
It’s hard to even remember the people we were when we first meet in 2006. They seem like completely different people from a completely different time. A time when motorcycles, weekends filled with friends and family and simplicity moved our world.

 
In December 2009, our simple lives changed when Norm was hit head on by a drunk driver. His leg was badly hurt in the accident, and he went through years of rehabilitation therapy.
 
But new and worsening symptoms began to appear, like spasms or extreme weakness. At first, we thought they were because of the accident. But when the spasms worsened, doctors decided to do a series of MRIs and a spinal tap.
 
Back and forth from the doctor we went until last spring, when Norm was diagnosed with primary progressive MS.
 
I was in shock. Although the tests pointed to his inevitable diagnosis, I felt I had just gotten hit by a bolt of lightning.
 
And we were told there’s not much we can do for his type of MS.
 
In the months since his diagnosis, I have watched Norm quickly go downhill. Sometimes he’s incoherent when he’s talking. He can stand up with help, and good days mean he can transfer from his recliner to his wheelchair.
 
I know he feels isolated. He can’t go to our grandkids’ birthday parties, sporting events or school nights. That hurts him. He misses them so much. I sometimes feel like I sit helplessly by and watch him decline.
 
Taking on this role as his primary carepartner has chipped away at me. How could it not?
 
When I am not working, I feel like I can't go out because that means he is alone more. So, I spend my free time at home. I rarely see my friends.
 
Our lives have changed drastically, and I am still trying to navigate this new life. I never thought I’d help my husband dress. That I would have no one to help me if I get sick.
 
A lot of days I feel overwhelmed, exhausted and very lost.
 
Our love for each other remains, make no mistake of that. But some days, this disease is a beast and gets the best of us.
 
There are days I snap at him and then feel horrible or days when he is so down he breaks my heart. We spend a lot of time apologizing.
 
I often ask myself: how did we get to this place? A place where a husband has a progressive disease. A place where his wife is trying to fight her way through this confusing, challenging unchartered territory.
 
But now I’m finding myself asking, where do we go from here?
 
MS is here. MS is in our lives. MS is in our marriage. Looking to the future, where do we go? How do we evolve our relationship and move forward?
 
I ask the MS community, particularly carepartners: where do we go from here, and most importantly, how?
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Karen

Karen Varner

Karen Varner is a proud mother and grandmother who is navigating the challenges and triumphs of being a carepartner with her husband of 8 years, Norm. She is currently an assistant manager at a packing and shipping store, and enjoys spending time with her family.

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    40 Comments

  • Johan   Feb 6, 2019 8:10 AM
    Hi Karen, let me start by saying I was diagnosed with SPMS in 2012, I am single, almost 50, have no children and have loved motorcycles since I was about 12. I stopped riding a few years ago because of MS. Life is totally different from when I was an able bodied guy.
    Where do I go from here? Well, as I see it, only one way to go, forward. I’ve always been a make it up as I go kinda guy, and apparently still am. One of my favorite quotes comes from an old girlfriend; she would ride on the back of my bike in flip-flops and a sun dress. I know, dangerous, but never any problems, and oh so beautiful, it makes me smile just thinking about it. She often said “the world is your oyster.” It’s actually from a William Shakespeare play. To me it means the sky’s the limit no matter my current situation.
    Another favorite quote comes from Howard Cosell. It first came to me when riding a motorcycle with my friends through the switchbacks in the mountains in Colorado. It goes, “down goes Frazier, down goes Frazier.” Fortunately I never went down, and what a great ride, but back to the question, where do I go from here? When first diagnosed I told a friend of mine I didn’t know what to do next. I hope I never forget what he told me, he said “one day at a time.”

    JE
  • Kristi Strait   Feb 7, 2019 12:24 PM
    I was diagnosed with MS in Dec of 2014. We buried my Grandma the day I was told it could be MS. I was 40 at the time. I am married to Thom and we have 4 kids. I have been a stay at home mom for 18 years now. According to my MRI results, there is no change. Ask my kids and my husband, life has changed. It is hard and MS has affected me and them. Physically I look fine, but on the inside I am not. I rely heavily on vitamins and acupuncture and most importantly- my faith in God. Day by day, I hope God can restore my marriage which is struggling but mostly that I could have a positive attitude each day! I wish you the best!!
  • Susan Cowles   Feb 7, 2019 12:34 PM
    Dear Karen: Thank you for sharing your challenges in an open and honest manner. You almost described my life too. I understand. My husband has progressive MS, we too used to have a wonderful active life. Unfortunately the disease has robbed him and me too. Going out is very challenging and difficult, although we still manage to do this in moderation. Our social life has suffered terribly and it strains every part of our lives. My husband spends many hours alone when I am working and he is housebound and cannot go out unsupervised. The shining light is we still have each other to laugh, watch a movie, spend time with our son, listen to music, enjoy our animals, we find moments when we forget about MS and remember we are humans and we are alive and have each other and our family. Good luck to you and your husband.
  • Melanie Goolsby   Feb 7, 2019 12:37 PM
    Hi, Karen. My name is Melanie, and I have MS. I wanted to share something that has been a help to me. I have joined an online community called the MS Gym. It's creator started it to support people with MS both physically and emotionally. It is a group that understands the everyday struggles and offers support. There are exercises created for people with all degrees of MS. Not only can you exercise to combat the physical struggles, you get encouragement that's so needed from other members. It is a positive place to deal with everyday issues. Check it out at themsgym.com. You'll be glad you did!! Best wishes to you as you walk this journey with your husband. :)

    ~Melanie~
  • Vicki   Feb 7, 2019 12:39 PM
    Karen I too have a husband that has been diagnosed with MS four years ago on December 31st our wedding anniversary. We had a very distinct feeling it was MS but had to wait for all the tests for an absolute diagnosis.
    My husband is still mobile and still works but it is a struggle everyday. I love him so very much and hate seeing him struggle so. My biggest hurdle is that the disease seems to be the only thing he sees anymore. I want us to be aware and work for a better life but it is wearing me down that MS seems to have taken over everything. I hate feeling I am selfish but I want more for us while we still can enjoy life.
    I am trying and live each day as it comes.
    Thank you for your story and for sharing it.
  • Melissa   Feb 7, 2019 12:42 PM
    Karen,
    My husband was diagnosed with MS in 2009 and then we met and have been happily married with little to no symptoms until 2013 when we wrecked on a motorcycle. He broke his hip and femur. During the days of surgeries, rehab, more surgeries, x-rays, and more testing we stuck together. Rarely would you see one without the other.
    We lost track of friends, met up with old ones and developed new ones.
    However as the years went by I had to go back to work and he stayed home. We have 2 teenage boys that generally come with extra friends. So while I think it is great that he is able to run boys, he struggles with time lapses, frustration with the hurry up and wait of life, severe depression and sometimes debilitating symptoms that put him in bed for days.All the while I get frustrated that I am not the one doing the running for the boys and the house cleaning and sleeping late.
    But then I take a step back and think, "this is the man I love. This is the man who makes me smile when things are bad, this is the man who held ME up when MY life was in shambles."
    My only advice to you is: keep going. Get up and work. Help your husband dress. Go to MS meetings. Do the chores, clean the house, pay the bills, walk the dog.
    But most importantly keep loving him. Throw in a little hug when you help him dress, hold his hand every chance you get, ask him for his advice on bills. Let him help YOU keep going.
    Read everything you can get your hands on about MS, studies, coping, etc.
    Ask questions. Talk to the doctors, talk to your family, talk to counselors. Talk to each other.
    Sometimes you will have to force yourself to keep it up, but the time you have together is well worth it!
  • Rachel McKinzie   Feb 7, 2019 12:49 PM
    Hi Karen, I want to start by saying Thank you for writing this blog and sharing your story. My husband has RRMS (not as bad as SPMS I know). We had been together for 3 years prior to his diagnosis in 2012. His diagnosis came after months of tests and trials. It was devastating to watch a strong man in his late 30s who had been a carpenter and artist all his life suddenly one day not be able to write his own name. His diagnosis came one week before our wedding and to say the least gave us both pause. But we both agreed that we took a vow to love each other through everything.... Even MS. It has been a crazy, frustrating, and at times very sad journey. He stays at home now, has many down days, and has very little social interactions with anyone but me. It has taken a toll on our marriage and well, how could it not. We try to take it one day at a time, find new things that we both can enjoy that are within his limits, and figure out the rest as we go. Where do we go from here is a great question one that I often ask myself. I too get frustrated with him, with the disease, and with our situation. I try to stop myself in those moments and truly be thankful for what I have. Don't feel bad taking time for yourself and always remember whether he says it or not, your husband is grateful for all you do. Remember you are stronger than you realize. Do what you can and love while he is still here. And as many others said, take one day at a time..... Oh and remember to laugh.
  • Leana Conway   Feb 7, 2019 12:51 PM
    You’re facing a difficult challenge. I am in the the same situation, however, I knew what I was getting into. You are in desperate need of support, it sounds like the changes have crept up on you.
    In my humble opinion, every situation is different; You need a total life reset. Sit down with friends and family and be honest. Ask them what they could realistically commit to, to help.
    I used to feel bad asking the kids to help the wrong way to look at it. Giving them the opportunity to help, will enrich their lives and help them grow as humans. Plus, there will be fewer regrets someday.
    You need to enlist professional help ASAP! You sound perilously close to burn out.
    My friends often come to my house when I can't leave https://leanaconway.blog/2017/11/23/well-i-guess-i-wont-have-any-secrets-left-after-you-read-this-not-a-task-just-a-little-chat-from-auntie-lee-lee-about-the-imperfect-art-of-care-giving/
    Thought you could relate to this post on my blog.
    Take care, dear lady ❤️
  • Steve   Feb 7, 2019 12:52 PM
    Hi Karen, I've had primary progressive MS for about 20 years. I'm pretty much confined to a wheelchair now. I would highly encourage you and Norm to meet with a neurologist who specializes in MS and get their opinion on best treatments for Norm. For me, it's been a Baclofen pump that has been surgically implanted to help with my spasticity and infusions initially with Tysabri and then switching over to Rituximab. My wife has questioned what happened and how we got to where we are today just as you have. There are no easy answers. But there are actions you and Norm can do to help cope. Best wishes to you both.
  • Kim   Feb 7, 2019 1:27 PM
    My husband was finally diagnosed with PPMS a year ago after years of symptoms and tests. We will be married 44 years this year. He started going to an MS center shortly after being diagnosed. This was the best thing we did. So much information and support found there. Not just for my husband but concern for me as well. He was going to start Ocrevus in the fall but had kidney function problems - a result of the MS and more tests of course. It does certainly seems to take over your life, but we just keep plugging along with the love of our family and hope ... of course.
  • Ron   Feb 7, 2019 2:03 PM
    I am in my office and this popped up which I usually ignore but your story hit home.
    I have had MS for 20 years and have owned a few business' and still do. Very hard to let go. Your story made me think more about the love of my life and what she has had to cope with rather than myself. I make every point to get her away from me and associate with friends and family a lot and not worry or think about me. Our golfing, boating, traveling, we used to do and then friends have had to change.
    Every day is a gift no matter what happens. Thank-you
  • Patti   Feb 7, 2019 2:18 PM
    Hi Karen. I was diagnosed December 22 2015 at the age of 58.. Within three days I was paralyzed from the waist down.. I wanted to know how it happened of course I was told to go on the MS sight we are on now. Back in 2004 I broke my neck but they didn’t find it till six months after, six months before I was diagnosed with MS I had to have more surgery on my neck as my spinal cord was collapsing. I fused from 3 to 7. So when I was diagnosed with MS I was confused. My spinal cord symptoms were crossing over with the MS symptoms. The DR’s told my husband and I that MS is hard on a marriage. In three years I have had my driving license taken away, lost friends, independence and so much more. My husband is my second husband we were only married two yrs when we found out back then he was so sure he was up to looking after me. But as the yrs have gone by I feel more of a burden then a wife. Even my sons don’t come around anymore . I have five grandchildren but never seen the last two and that was two yrs and one year ago they were born. I sleep downstairs in a converlesent bed. I hate the way I feel. I have MS treatment that takes five hours every six months. I get depressed as I have to rely on my husband to take me to the dr’s appointments. , to get my hair cut, shopping. My mom died last March. I was told I couldn’t go to her funeral as the journey was to hard for me . It was in uk. Last August I had a mass found and surgery was done. They told me they were very glad I came in as it was a high 3. The second time I have had cancer. At this time I feel I’m around sickness all the time. I feel so tired, I wear depends since being diagnosed what else do I have to look forward to?
  • Doug Tagg   Feb 7, 2019 2:59 PM
    Karen
    I am sorry to hear of the difficulties you are experiencing and I hope things continue to be manageable for you and your husband. I too have ppms and like your husband I led a very active life. Many things I had to let go such as working and driving. But I take a personal pride in the things that I can safely manage. I bathe and dress everyday like I am going to work . I exercise everyday. I pray or meditate everyday. When I can, l use paratransit to get back into the community and give my wife some freedom to go back to work and anything else she wants to do. I know she is there for me when I need her but I am always trying to find new ways for both of us to find some semblance of the independence we both had. Good luck to you both.
  • Bob Simon   Feb 7, 2019 3:14 PM
    Karen,
    You have it very tough, and I feel for you.
    I have MS,(relapsing/remitting) for 20 years. While, I'm still working and walking, with at the most a pair of hiking sticks, I know and expect that at some time I might progress to needing a wheel chair or scooter. I push myself to avoid it everyday. Many days I'll get home from work and take a 3 hour nap before I feel that I could sit at a table for dinner. That's me, and it ain't so bad. But I can't give up. And I suggest that neither you or Norm, give up. While he has serious trouble getting through many things, there has to be things he can do. So, dig into those things that interest Norm or you, separately or together. It will fill time and lead to more questions or things to interest you further.
    Ask guides at The MS Society, to help you find Adult Services, Visiting Nurses, etc. in you town or area that can provide support for Norm, so you can get time for yourself.
    To a certain extent, you have to leave the assisitive caregiver and Norm to deal with each other.
    When I was diagnosed, the first book I read to learn about MS, was written by a woman who had rapidly advancing MS. At the time she wrote the book, she had only the use of her left arm and hand. But, she traveled the world, wrote a book, had an active life, to her maximum ability, with assist.
    Karen, no matter how dark the storm, there's always a silver lining. Start surfing that silver lining.
    My best to you & Norm,
    Bob
  • John   Feb 7, 2019 3:28 PM
    Not sure what made me read this blog, but glad I did. I was diagnosed fifteen or twenty years ago. I have struggled for years. I have no family anywhere near me. Everyone always says, if you need anything, just call. I found out pretty quick no one wants to hear about it.
    In the last year I moved from the mid-west to the S.F. bay area to lake care of my ageing mother. My MS is stable (knock on wood) for some time now, but I suffer from major fatigue, back pain, motivation, major depression, mobility and other problems. I can barely take care of myself, now I have more on my plate.
    I wish I knew where to go. I too ride but now I stay here and tend to my mom not going anywhere but food shopping. What a way to live.
    I wish I had the answers, but I don't. Can't tell you how many times I cried myself to sleep, I try to survive one day at a time.

    I wish you and everyone well.
  • Joyce   Feb 7, 2019 3:28 PM
    Hi Karen,
    Thank you for sharing a part of your life with us! This hits home for me and I truly empathize with you! My husband Christopher of 23 years has had MS for 6 years now. I call him my modern day Job because it seems this disease and it's horrible symptoms never let up!! My husband is also legally blind from (RP). You ask "where" do we go from here. I say to you anywhere you guys want to! It's hard I know but, we (care partners) are equipped for this challenge! You asked "how" I say by loving, remembering and realizing without a shadow of a doubt that if the shoe were on the other foot and it was you and I who had this crippling disease! Our husbands would be there for us every step of the way! Praying for Norm and especially you!
  • Kathryn   Feb 7, 2019 3:44 PM
    I have also been personally affected by MS but in a much different way. I was diagnosed in 2005 as a newlywed and MS has been a cloud of uncertainty in my life:
    How bad will it get? (Varies day to day, sometimes within a day)
    Can I still be a mom? (Yes- two beautiful kids one conceived pre disease-modifying treatment and one eight years later after going off meds for conception)
    How will people see me? (Depends on the person!)
    Am I still as career-ambitious, motivated, and energetic as I once was? (No, MS has drastically changed my outlook and priorities. What I “spend” my energy on is much more family focused and deliberate.)

    I am also the proud and adoring mama of a son with disabilities, and understand all too well the mental and physical struggles of care taking. As I have helped him learn to sit up, stand, swallow, and speak, and even breathe on his own through years and years of therapies and surgeries I’m even more grateful for the experiences of my able-bodied years, limited though they may be. I’ve been told I act wise beyond my years- I think MS and care taking forced me to grow up fast and I’m ever so grateful that I figured out my priorities early in life.

    May peace and blessings follow you, your husband, and your marriage throughout this exhausting journey.
  • Michelle   Feb 7, 2019 3:46 PM
    Karen and Norm:
    What a nic and moving story! My husband Brian and I can relate to you both. I found out I had MS in November 2015. I am 55 yrs old and doctors ignored me for years! But are life has changed a lot ...I have been getting worse but even though this has happened my husband has helped me a lot! He does most of cooking, running errands and cleaning! Thanks
  • Sharon Campbell   Feb 7, 2019 4:24 PM
    Hi Karen,
    I feel your pain girl. My husband has secondary progressive MS and is in a wheel chair all the time . He was diagnosed wit RRMS almost 35 years ago and for about 15 years our lives were relatively normal. There were no real treatments then essentially just the high dose steroids medications for exacerbations but otherwise after a few weeks back to new. Then the exacerbations became more frequent and then the limp, then the leg dragging ,and then the chair part time and then the chair all the time. WE have tried numerous medications as they have came out Copaxone, avonex, and now ocrevious.
    I love my husband and it is very difficult sometime to see him go through what he goes through. One thing that really gets me is trying to travel with a wheel chair when Hotels do not know what accessible means. Restaurants give you strange looks when you come in with the OH NO look. Sometimes I would just like to run away knowing I won't but I think it helps to realize it is normal to feel that way.
    Also all those high dose steroids have come back to haunt us. He had a heart attack in 2009 ?? related to the steroids, He also now has metabolic syndrome directly related to the steroids This reeks havoc on his blood sugars ,weight gain and moods.
    The one blessing is that his MS affects his spine instead of his Mental status . Most of his plaques are on his spine and not on his brain. I consider that a plus because we still have ability to communicate and consul each other.
    But this is not an easy life and it does help to talk it out with others that have the same difficulties.
  • Steve Breard   Feb 7, 2019 4:54 PM
    Hi Karen;
    My wife was diagnosed with MS in 1998. We thought we had escaped the worst as, with the exception of numbness, things pretty well went about as normal as we raised the kids and planned the future. Then one night, we went out dancing and she could not hold her balance. From there the deterioration has been no less than startling. Fast forward to 2019 and we are now dealing SPMS and its challenges. She needs help with everything from eating to using the restroom. She has to face the day alone while I work although I make a special trip home at lunchtime to check on her and see to any needs. I cared for both my mother and her mother at the end of their lives and had no illusions as to what to expect. But my heart hurts for her as she cannot go to most of the functions her friends still have and we are limited, though not quite blocked yet, from too many outings. Those will wear her out for following 24 hours. We still watch TV together although I cannot stay up as late as she would prefer ( she is almost an all-nighter) and we enjoy dinner together with me helping her when her hands will not cooperate. Still would not trade her.

    On a personal note I consider MS as nothing less than a thief and I occasionally wish I could pull it right out of her and make it suffer like it makes her suffer.
  • Donna   Feb 7, 2019 5:08 PM
    Karen, I could not get through this without falling apart emotionally. This is how I feel everyday and could not have explained it any better. Just to let you know you are not alone, and thank you for making us realize that we are not alone.

    Donna and Sam
  • Joseph Palazzo Jr.   Feb 7, 2019 5:09 PM
    Hi, My name is Joe and I was diagnosed with MS in May 2015 and the fatigue has ruined my life, literally!!! Can anyone recommend a medication that really works throughout the day?!! I take the generic form of newvigil and concerta. Hang in there Karen and do the best that you can do that's all anyone can do. People have no clue what we are going through!!! I'll be praying for you!! God Bless always!!!
  • LynneAnn SHAPIRO   Feb 7, 2019 6:50 PM
    My heart goes out to you. My husband has secondary progressive MS. His physical decline has been slow. But his cognitive abilities have declined dramatically. What saves me is my support group. Most of us are going through the same issues and the support and ideas are something we cannot do without.
    Do you have a support group? Look for one in your area. Try to find a social worker who knows MS and help her start one. A caregivers group. Family and friends can be helpful, but you need to be with people who are experiencing the same thing you are.
    Keep in touch. LynneAnn
  • penny Zefkeles   Feb 7, 2019 11:36 PM
    I'M 75 AND WAS DIAGNOISED 5 YEARS AGO AND I WOULD LOVE TO BE PART OF A GROUP TO NOT FEEL SO ALONE AND AT TIMES SCARED.
  • ncds  Feb 8, 2019 3:05 AM
    Thank you for this honest and relatable story. I am dating a divorced dad who has MS whose disease is progressing from RRMS to SPMS. I have fallen in love with this guy and am preparing for an eventuality that you have described. I can't believe his constant motivation to push himself and keep up with me, though fatigue is setting in earlier and faster. This is my first time on this site and I found this particular thread applicable to my situation. I think we should all 'Appreciate' all of the posts we have read! If you make it down to this post, you should 'appreciate' every experience that has been shared here.
  • Val   Feb 8, 2019 7:50 AM
    Karen, I truly know that the MS dx was devastating to you. I halts your life as you once knew it. A zillion why's constantly going on in your head. Frustration at times on an all time high. I had to remember the vows I took when I got married, the words "for better or for worse" became real as I sat and thought about this disease after receiving the dx, but thru it all I remain positive and trust my God! I hav ed MS, but it doesn't have me. Stay strong thru everything you encounter. God bless you and your and family.
  • Sue Paterson   Feb 8, 2019 9:53 AM
    Karen,
    Your story is so much like my story. My husband has had MS since 1970. He loved his work in the construction industry and he had a lot of good years with only minor relapses. Now he is in the secondary progressive stage and requires my help with so many things. Fortunately I am a retired teacher and can stay home to help him. Unfortunately I don't have the outlet that working provides.
    The neurologist says his MS is stable, but the damage is done. and he is having more problems with daily activities and cognition.
    For years we have been taking it one day at at time, but we are both terrified of what comes next. How long will I be able to care for him? Will he have to go to a nursing home? What will that do to our lives? Just like this horrible disease there are no precise answers, and the not knowing is another symptom.
    I pray ALOT! I do small things that help us feel that maybe we are making a difference: fundraising for Bike MS, being a District Activist Leader and writing to and visiting congressional leaders about legislation for funding MS research and other issues affecting people with MS.
    There are so many days that am ready to give up, but my husband never does. He rarely complains even though he also has lymphoma, diabetes, and has had a heart attack. We put our trust and faith in God and know He will get us through the most difficult of times. His time is not our time. But when He knows the time is right, there will be a cure and healing. He will even sustain us as we wait. I know and believe this, but it sure is hard to wait!
  • Judith   Feb 8, 2019 3:37 PM
    My husband and I are in a similar situation except that I have MS and he is my care partner. One of the things we do is to simply admit at times how difficult it is. It seems that just saying how hard it is out loud lightens the load a bit. The other thing we do is have date night every Friday night. For us that means frozen pizza and a movie at home. It gives us something to look forward to. The menu is set so there is no planning. We listen to music, enjoy supper together and have time as a couple instead of as a patient and caregiver. Lastly, I have found that learning to breathe (through yoga) and 5 minutes of meditation/contemplative prayer daily help with anxiety and stress management.
  • Michael Honeycutt   Feb 8, 2019 5:42 PM
    I’m the husband with MS, relapsing variety. My darling bride is my caregiver. I thoroughly understand exactly what you mean. In 1987 my wife got hurt at work and it required 3 major surgeries on her back and I was the caregiver for over a decade, almost two. Don’t give up! I’m stuck inside (heat sensitivity) half the year, so I understand isolation. I AM that inconvenient friend without friends that can’t do much. I garden a little and have started preserving what I grow to control contents. I find being domestic really makes me feel human again for a while. I encourage raised bed or container gardening. Good for both of your heads to play in the dirt and promote life! Blessings and prayers!
  • KrystalKlear   Feb 9, 2019 2:07 AM
    Dear Mrs. Varner,
    I am sorry for the MS storm hitting every part of your life.

    If may, I would like to share some words intended to comfort. Although I am not familiar with the Primary Progressive MS, I am familiar with another type.

    It seems pretty common to fight to have one's "old life" back. Truthfully, looking at everything differently may help. It was not your "old life," but your life at that time/era. What is happening now, is the transition to your "new normal." When you think about the phases of your life without this illness, wouldn't you both have had to transition from newlyweds, to a settled couple, to parenthood (if that applies), then as empty nesters or retirees? The point being that life always include changes; those you like, those you may even hate.

    Everything is made more difficult if you resist it. However, resistance and and endurance are two completely different actions. I sure you already know what is resistance. How about endurance. Endurance, is the ability to get through a trial, and being strengthened by it; instead of the trial grounding you into the dust.

    Embrace you and hubby's "new normal." Doing the following may help:
    1. Step back mentally, look at you and hubby's current interactions--especially on rough days. How can you make it different? Softer? Kinder? Agree to a signal word as the need for a time out, going silent, thinking of how to express yourself so that your point is heard versus your frustration; and needing fewer apologists. Please remember that expressions wrapped involume and anger block your message.

    2. Hopefully, I am not offending you, but....... I like to consult the oldest textbook on life, the Bible. There are practical steps to help us in every facet of life. For example:

    2Corinthians 1:3-4~"Praised be the God and father of tender mercies, and the God of all comfort, who comforts us in all our trials so that we may be able to comfort others in any sort of trial with the comfort that we receive from God." Notice what sort of God is He--one who comforts. His comfort is extended to us by reading the Bible, and applying its practical instruction in our life.

    Ephesians 4:29~"Let a rotten word not come out of your mouth, but only what is good for building up." Do not add fuel to the fire when he/you are feeling frustrated.

    Proverbs 25:11~"Like apples of gold in silver carvings Is a word spoken at the right time." Choosing your words and the right moment to speak positive and honest expressions can diffuse the situation so that quarreling may be avoided; less apologies.

    Revelation 21:4-5~"And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away. And the One seated on the throne said: "Write, for these words are faithful and true." This is Almighty Gid's promise to change conditions right here on tge earth where these problems exist; all illnesses will be brought to an end. That includes Primary Progressive MS.

    I hope this is of help to you and Mr
  • Neel   Feb 9, 2019 12:17 PM
    I have Ms for 21 years. I started declining after my son was born 15 years ago. All those things you describe my husband does with a smile. But I would do the same if I were in his shoes. Just remember that God gives you what you can handle and he wants you to help your husband. In sickness and in heath
  • Ginger   Feb 10, 2019 7:39 AM
    I too am caregiver to my husband who has progressive MS. It certainly is a roller coaster ride but we are hanging in there most days.
  • Trish   Feb 10, 2019 8:41 AM
    I was diagnosed with ms in 1993. At the time I had a loving husband who helped me in every way. Then in 1998 he died suddenly from a heart attack. So I was then left alone, when I say alone I mean alone, as most of my so called friends left too. A few months later I was diagnosed with breast cancer. I had my breast removed, followed by chemo and radio therapy. Along the way a Neighbour who also lost his wife suddenly, used calling to have a chat as he too had lost his so called friends. He helped me through my cancer, giving me lifts to the hospital, coming to see me when I had to stay in hospital, laughing with me when my wig would fall sideways He was a great friend. Once my cancer treatment was finished, it took almost two years, my neighbour and I started going out for meals together and ended as a couple. The next few years every was great, he understood my ms often better than I did, he used to say he could see it in my eyes, how I don’t know but he was always right. My inner symptoms were the worst, pain,tremmoring on my insides that nearly drove me mad, pins and needles, night time itching..... I could go on and on, but I was determined to live my life to the full and we did over the next few years, we were very happy or as happy as I could be living with ms and without my husband and him without his wife. Then the worst happened, he got cancer. He said he was going to take a leaf out of my book, and smile through all the treatments, which he did, but unfortunately the cancer took over and he died within a year and once again I was alone. Since then, almost six years ago, I hardly ever leave the house, or should I say, the garden. I have a large garden and spend most of my time out there alone with my thoughts. That too is becoming more difficult as my balance has become more of a problem. Last year I had to have a toe am*****ted, that was hard not to have someone to share it with. I also now have inflammatory arthritis, and have been told I have (spms) but on alone I’ll struggle. So all you people who have a partner with ms ( I know it’s hard) but try to enjoy every moment you have together as one day, you too might be alone.
  • Sonya Pierre   Feb 11, 2019 9:46 AM
    May God continue to bless you and your husband and keep you is my prayer. Thank you for sharing. I am the one with PPMS! I am always thinking about me and how this has changed my life, I have never looked at it from my husbands perspective. Thank you again,
  • Robert Ducharme   Feb 12, 2019 11:30 AM
    My Wife was diagnosed with PPMS, over 20 yrs. ago and We have just celebrated Our 49th yr. of Marriage, life with Progressive MS is difficult. I retired at age 60, 13 yrs. ago to be Her full time Carepartner, and up until 3 yrs. ago She was able to walk with a Walker, but after 3 Grand Mal seizures She is now Wheelchair bound. The best advise I can give You is to try to stay positive, because with PPMS, there is little else. Treat the symptoms, try to make Him comfortable, and above all, try to take care of yourself, take time for yourself, if you can, and do not feel guilty.
  • Peggy   Feb 12, 2019 7:43 PM
    Every day is different. Some say. what’s going today I just take and.im trying to. Keep my legs strong.waiting f For him to come home to put the clean sheets on the bed
  • Peggy   Feb 12, 2019 7:44 PM
    Every day is different. Some say. what’s going today I just take and.im trying to. Keep my legs strong.waiting f For him to come home to put the clean sheets on the bed
  • Peggy   Feb 12, 2019 7:44 PM
    Every day is different. Some say. what’s going today I just take and.im trying to. Keep my legs strong.waiting f For him to come home to put the clean sheets on the bed
  • Julie   Feb 14, 2019 9:53 PM
    Karen, Oh how I relate to your words! My husband was diagnosed in 2006. That first year was bad - his neurologist initially was concerned with the 'fire in his spinal cord' rather than diagnosis - things were so inflamed. About 20 months later, he was well enough to go back to work - so we deluded ourselves into thinking it was all good. MS is a sneaky thing, small losses occurred, but we told ourselves it was all good. In 2013, the doctors gave my husband 6 months. He died in 2017. Those last 4 years were rough, the decline was like a snow ball - slow, small things, then bigger, then bigger. We managed what we could, a walker, a scooter, driving him to work, then finally out on disability and a wheelchair. I have no medical training and never wanted any - I don't have the stomach for it. But I learned. Because that's what you do when you love someone! Some things that worked for us - when he moved to a hospital bed - I got a twin mattress and shoved it up next to his bed. We tried sleeping under our old queen comforter, but incontinence and constant laundering soon made that impractical. We invited friends over for meals - made it a pot luck. We chose themes - Italian night, Mexican night, Chinese New Year, etc to make it more fun. We found a deal on a wheelchair van and tried to do things. Movies were a great escape. I wish we had done more, gone more places, but I was so tired! Getting him in and out of the van was exhausting, it was often easier to go myself! Don't give up because the wheelchair van prices are crazy - seriously - something may turn up. I prayed a lot! And I had a lot of prayers said for us. I reconnected with high school classmates on Facebook - and they prayed and cried and prayed some more for my family. I know that held us up. If you can afford it, hire a care giver, even part time. It will give you some freedom, to go to the grocery store, to get your hair done, to take a nap in your car. Becoming a caregiver changes your relationship. The love remains, but it is demonstrated in different ways - diagnosing UTI's and getting him the antibiotics instead of hugs (because he can't lift his arms anymore), feeding him when he can no longer feed himself instead of going on a trip together. Mostly, find reasons to laugh together. Initially, that first Christmas before his diagnosis, my husbands hands started to curl in like claws. I called him Santa Claw. His sister was horrified, but my husband laughed - he knew my humor, and his, and we laughed together. So laugh, every chance you get.

    And never, never, feel guilty- for what you didn't do, should have done, could have said. Do the best you can and know that it is enough. Your words said it - the love remains. So know, in your heart, that you do all of the things for him in love.
    Someone asked me if I had regrets after my husband died. I said 'Of course! I wish I had been a better wife." His answer resonates with me - he said - 'I watched you manage your job, your family and all of the things with your husband. I watched you advocate for him with his doctors, take care of your children and do your job. You had a lot of balls in the air, and if you had done even one thing differently, it would have meant doing something else differently, handling this thing over here would have meant you didn't handle this over there." So know - that as you manage all of the things in you life, to let an attitude slip here or there, may prevent a bigger issue over there. It's okay. Your life is hard. But you are still blessed - you still have him, and you are learning things that most people don't get the chance to know. To know that you really are strong, you really do know how to love completely, that you can do things you never thought possible, that you are an incredible woman. Seriously.
  • noorbaccus  Feb 17, 2019 3:32 AM
    Please be kind to yourself .. God bless X