5 Things I Wish I Knew As a Caregiver When My Wife Was First Diagnosed

  • by Paul L.
  •   June 21, 2016

Paul L. is a paid Advocate for Teva Neuroscience, Inc.

It’s been nearly 23 years since my wife was diagnosed with relapsing multiple sclerosis. When we first learned of her diagnosis, the news was devastating, especially for someone who just finished college and began her career. Of course we were worried, scared and shocked. Ready or not, I quickly shifted from her partner to her caregiver, which was not an easy and seamless task. I wish I knew these things 23 years ago.

1. I am not alone.

It’s easy to be devastated by news like MS. It was hard for me initially because I thought I was alone. As a new caregiver, I felt isolated. But I soon found organizations and groups providing resources and support to caregivers. I learned over time, I was not alone. Today, I am reassured knowing that there are millions of caregivers in our country, doing the same job I have been doing for a long time.

2. Get to know her RMS.

When my wife was first diagnosed I read everything about MS. I wanted to know what I was up against. Caregiving became easier for me years later when I realized that I needed to know her RMS, because there is no standard. Once I understood my wife’s RMS, I have been able to be a stronger caregiver to her, watching for symptoms and helping where I am most needed.

3. Believe in the power of change.

I think it’s hard to change, but making small lifestyle changes have made a big difference in our lives. Knowing that my wife doesn’t do well in extreme heat, and knowing what time of day her fatigue is at its worst, has helped us manage RMS as a team. Now, we avoid hot beach vacations, and when we do travel and vacation, a 3pm nap is usually on the agenda.  

4. This disease will introduce you to some wonderful people; many are our best friends today.

My wife and I have learned that MS brings people together. The two of us are drawn to people with like interests and commonality. Over the past two decades, my wife and I have become friends with some dear people who live with the disease, or take care of someone with MS. We are thankful for their friendship.

5. We can find a life balance with RMS.

My wife, who lives each day with RMS, is the strongest person I know. I love being her caregiver and facing each day together. I think it works for us because of the balance we have found together. We try hard to make time for the fun things, our family, eating well, and exercising.

These are some of the things that have made a difference in my time as a caregiver. I admit, our MS journey has been a roller coaster, but, staying positive, and discovering ways to live with RMS as a team has made the ride manageable.

Paul L.

RRMS Caregiver

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108 Comment(s)
  • Carolina | June 22, 2016
    Thanks for sharing about your experience. It's wonderful that you and your wife have found was to deal with the fatigue - good luck to you both!
  • Eve | June 22, 2016
    Paul this is such a heart warming story just beautiful. This is my story as well so it's well said. Thank you for a inspiring story 😎
  • Kathy | June 22, 2016
    Thank you SO much for writing this! We are coming up to two years of my diagnosis. We are still a bit overwhelmed and navigating our way through this. But as with anything we do, we do it together. I have felt guilty about some of the changes we have had to make, but hearing from a spouse, with how you view this, has made me realize I have nothing to feel guilty about. Thank you for sharing.
  • greg | June 23, 2016
    I have rms took me awhile to understand but I got it now is life changing I to was strong will person never had to have help for any thing but I was wrong this stuff is sometime overbearing but keep on keeping on
    • Teva's Lift MS Team | June 23, 2016
      It sounds like you’ve been through a lot, Greg. We’re glad you’ve reached out for support. Let us know how we and the community can help.
  • Pamela | June 23, 2016
    Nice reflections. I wish Paul would have signed the piece "husband" instead of "RRMS Caregiver". Sure, my husband does some caregiving as do I (he has MS as well), but it is equally important to remember that you are husband and wife; not simply a patient.
  • Karen | June 23, 2016
    I wish I had a caregiver. Husband of e4 years left me by myself.
    • Teva's Lift MS Team | June 24, 2016
      We understand living with MS adds extra challenges to life, Karen. We’re so glad you’re here and hope you find helpful support.
  • Mark | June 24, 2016
    It is true that no two people will have the exact same experience with MS. I have done well with mine, but I go through spells where I am so tired that I can do nothing. MS has led me to meet a lot of people, for which I am blessed and hopefully, I have been a blessing. Thanks for writing.
    • Teva's Lift MS Team | June 27, 2016
      We are so glad you’ve chosen to share your experience with us, Mark. Please keep us posted on your progress, and best of luck!
  • Linda | June 28, 2016
    I agree with everything you have written and I would add make sure to pass this along to others who may be new to MS:)
    • Teva's Lift MS Team | June 29, 2016
      We’re so glad to hear our community has been helpful to you, Linda. You’re part of what makes this blog great!
  • Dawn | July 04, 2016
    I wish my husband would have researched RMS and Fibromyalgia. Maybe our marriage would have lasted more than the 27 years we spent together. Thank you for your kind words. This give hope that there are more wonderful men out there. I will live with RMS, and continue to look for a better life.
    • Teva's Lift MS Team | July 05, 2016
      We understand living with MS adds extra challenges to life, Dawn. We’re so glad you’re here and hope you find helpful support.
  • Cynthia | September 17, 2016
    I have to admit that I have my alone time and as I feel that I am having a bad day and I usually get a good book and find a nice cozy area And I read. I do have many day's that I enjoy having friends or my brother and sister who enjoy the time I spend with company life is a never ending cycle and therapy as well as doing crafty things to finish the day.
    • Teva's Lift MS Team | September 19, 2016
      It sounds like you’ve found something that works for you, Cynthia – kudos for your efforts! Please keep us posted, and be sure to check back for more tips from the community.
  • Maril | September 19, 2016
    God bless you both.
  • Helen | September 20, 2016
    I'm so very glad thatyou two have found a balance that works in your lives. I also have MS ,21 years now. It is a struggle, but not insurmountable by any means. I wish you both a happy,healthy future together.
    • Teva's Lift MS Team | September 20, 2016
      Thanks for sharing your positive attitude, Helen. We appreciate your contribution to the Lift MS community.
  • Barbara  | September 25, 2016
    It helped me to understand some things about my daughter's health I understand better what my daughter is going through
    • Teva's Lift MS Team | September 26, 2016
      That’s great to hear, Barbara! Having the support from family and friends can make all the difference.
  • Pete | September 25, 2016
    Amen!
    My wife was diagnosed in 1992 with RMS. Learning about, and managing, MS has been a priority for both of us.
    One thing I would add is learning to respect the limits. We look at it as a pot of energy. Every morning we wake up, evaluate how she's doing (i.e. checking the energy in the pot) and then we go from there. Obeying the limits has been very hard to learn and we still overdo it.
    • Teva's Lift MS Team | September 26, 2016
      What an inspiring story, Pete! We appreciate your contribution to the community.
  • Diana Everett | September 26, 2016
    Thanks for the tips. I have a sister in the hospital for 2 months now. Doctors have given up on her twice but she's still here. She celebrated her 52nd birthday Sat., September 24th. We are grateful to God!
    • Teva's Lift MS Team | October 04, 2016
      It sounds like your family has been through a lot, Diana. We’re glad you’ve reached out for support. We wish you and your family the best of luck!
  • Mamie | September 26, 2016
    Blessed! I know that may sound crazy but you and your wife have the enchilada " in sickness and health"
  • Annie Weathersby  | September 28, 2016
    I myself have MS , diagnosed in September 2011, my husband don't educate himself on it he just goes by my everyday day living, I'm thinking he's in a bit of denial, I don't have to many friends or family I can talk to , I mainly keep my MS to myself take my medicine an still enjoy life the best I can, I can say I can stand a lot of heat to have MS
    • Teva's Lift MS Team | October 21, 2016
      We are glad you found us, Annie. We wanted to let you know that you can connect with others living with MS on the Lift MS Facebook page. If you are interested, you can check it out at https://www.facebook.com/LiftMS/. We wish you the best.
  • Lorrie Warren | October 02, 2016
    I have RMS for 20 plus years and my husband is my caregiver. It is wonderful knowing we can count on our partners like you. I live in SC next to beach so heat is a factor. I invested in a cool vest when I was diagnosed in 2007. I can go ride my ATV in the heat of summer and other fun things. We work and we play harder because life is unknown.
    • Teva's Lift MS Team | October 03, 2016
      Thanks so much for sharing your story, Lorrie.
  • dawndee | October 02, 2016
    Gives me spiritual happiness reading this
  • Debbie  | October 04, 2016
    I found Paul's comments uplifting.
  • Julie Hasten | October 07, 2016
    I have ms for 27 years
  • Tina | October 07, 2016
    I was diagnosed with RMS 4 years ago and it was very devastating. After husband retired from Navy after 20 years I get a horrible disease that's affected my whole family. Nic to know I'm not alone and neither is my husband who is my caregiver. Thank you for sharing. Tina
    • Teva's Lift MS Team | October 10, 2016
      An MS diagnosis can be an emotional experience. It's great that you're here and we hope you find others in the Lift MS community, who can relate, Tina!
  • Teea | October 07, 2016
    What doeis RMS mean
    • Teva's Lift MS Team | October 25, 2016
      Thanks for your comment, Teea. We’re glad you’ve found our community, and hope you find it helpful. Our blog post MS 101: What is Relapsing MS? provides information on RMS that may be helpful to you. You can find it here: https://www.liftms.com/education/relapsing-ms

      For specific questions about your experience, we encourage you to seek advice from your healthcare team. Best Wishes!
  • Eleanor  | October 07, 2016
    For Lorrie Warren: Please tell me about the cooling vest. I have a dear brother-in-law who has MS. I'm sure he would benefit from a cooling vest as he suffers a great deal from the heat in summer.
    Thank you!
    Eleanor
    Note: This may be a duplicate as my first comment disappeared while I was reading Terms of Use.
  • Dody | October 07, 2016
    Your MS in most cases, seems to be able to be treatable not cureable. I have had it now for 23 years. Just as many I have read about have some things in common. I feel for all people no matter what their disease is. I stand proud for all care givers as they too, are victims. I worked for many years. Nevrf feel guilty. Live everyday the best you are able. Many people care including me.
  • Jonathan | October 10, 2016
    I appreciate you for sharing from your experience. I will try make sure we avoid high heat conditions and discover the time when my wife needs to rest.
  • Toni | October 11, 2016
    My daughter-in-law's mom has MS. Reading this article, and the posts have given me better understanding of her life now. Their family is kind of large and have frequent get togethers. Even with MS she hosts and is busy the whole time. I am always invited, and as good hosts they never allow me to help in any way. But now that I know these things maybe I can help in other ways. GOD bless you all.
    • Teva's Lift MS Team | November 08, 2016
      Having support from family and friends is important, Toni, and we are glad to have helped you understand her situation. If you are interested, we have a few other articles from Care Partners that you might like. You can find one titled "A Family of Caregivers" here: https://www.liftms.com/motivation/family-of-rrms-caregivers. We hope that you enjoy this post too!
  • Van stevenson | October 12, 2016
    My wife has ms she is wheel chair bound it is not easy but l love her I am glad I am retired
  • Earnie | October 12, 2016
    When you first become a caregiver reach out to all your relatives. Be resigned that they will not understand what you are up against. Quickly find other care givers to learn from. Absolutely don't become a care giver by yourself.
  • Carole | October 13, 2016
    Thank u Paul for sharing your personal experiences. My Sister-in-law was recently diagnosed with MS and was in denial for a while. Now, with a lot of MS education she is positive and jokes around about it. I know she has met some super great people, one being one of my close pals who lives in another State, and so willing to help. Thank God for loving caregivers like yourself. God Bless u & wife
    • Teva's Lift MS Team | November 04, 2016
      We're so glad to hear you are enjoying the blog, Carole. It sounds like your sister-in-law has a lot of support from friends and family, which is important. Thank you so much for sharing your story!
  • Kim | October 13, 2016
    I was diagnosed in 1999 so RMS is not new to me. There is a way to find you bliss, just go slow, find your pace and take care of yourselves. Small changes can make the difference between a good day and a hard day. Most of all...don't stress over the little things. Enjoy every moment.
    • Teva's Lift MS Team | October 14, 2016
      Great suggestions, Kim!
  • Denise | October 14, 2016
    I have RMS. I was diagnosed with it in 2004. But I've had it since 1987, after the birth of my second child I started walking with a limp. Now I use a walker and a hip flexon device (leg brace) to help me walk. I need to contact the MS Foundation to get help. I always try to stay positive. Thanks
    • Teva's Lift MS Team | October 17, 2016
      Thanks so much for sharing your story, Denise.
  • Debby | October 15, 2016
    My sister Cindy was diagnosed with MS years ago. She has always been the strong one in our family. Her husband takes real good care of her. She still gets around but not well. It breaks my heart seeing her like this. Thank you Paul for your story. It helped me slot.
    • Teva's Lift MS Team | November 04, 2016
      Thanks for sharing your story, Debby! An MS diagnosis can be an emotional experience and it's great that your sister has the support of family and friends. We're glad that you enjoyed Paul's blog post and hope some of our other posts are also helpful. Best Wishes!
  • Cindy | October 15, 2016
    So nice to read this from a husband who gets it. Sadly my husband does not. He still talks about moving to South Florida with no thought of how it will effect me. I struggle with daily tasks such as dressing and will not come to help or even ask.
    • Teva's Lift MS Team | November 04, 2016
      We're sorry to hear that, Cindy. Having the support from family and friends can make all the difference. Please continue to lean on the Lift MS community for support. If you haven't already, you may want to check out our Facebook community as well: https://www.facebook.com/LiftMS/. We wish you the best of luck.
  • Jeff | October 16, 2016
    I do need help and news to know where to look for it. I thought it was great to read about the problem the heat chooses because I too deal with that. I also understand about the stress and fatigue that gets the down when she tires as the day goes on. I need to know how I can learn how to handle when she thinks that it is bedtime for both of us when I need a little time to chill after tough day.
  • Mary | October 17, 2016
    You are a rockstar!!! I recently went through the care taking of my mom, (she passes 3 yrs ago) A few months later it was my father, he passes about 18 mos. ago. It was about a 5 yr rollercoaster of deep emotion & everything else that goes into caretaking. I have a huge amount of respect for you. You stayed when your beautiful wife needed you the most!! I hope she & U are doing well
    • Teva's Lift MS Team | October 18, 2016
      Thanks so much for sharing your experience, Mary. We are sorry for your loss; it sounds like you have been through a lot. We're glad you're here and hope you can find comfort and support in the Lift MS community.
  • SCOTT | October 18, 2016
    If you're lucky enough to save your marriage after a diagnosis of MS I think these are great tips for living day to day. I have read that over 90℅ of marriages fail after one is diagnosed with a progressive condition. About the same number from the death of a child.
  • Debbie | October 18, 2016
    Did your wife find it hard to give up her independence
  • Kathy | October 18, 2016
    We need help. It's sure been a roller coaster and when reading this I feel like there is hope. Our family is struggling and we live day to day with my husband living with ms. Looking at this in your point of view seams worth a try. Thank uou
    • Teva's Lift MS Team | October 25, 2016
      An MS diagnosis can be an emotional experience for the entire family and we appreciate you sharing your experience, Kathy. The Lift MS Facebook community is filled with MS patients and caregivers that may be able to provide you with the support you are looking for. We encourage you to check it out: https://www.facebook.com/LiftMS/
  • Ron | October 18, 2016
    Thanks
  • Larry | October 18, 2016
    My previous wife has passed but knowing and living with it day in and day out and watching the struggle is heartbreaking and to watch the people who thank that my wife was drunk or on drugs !.
    • Teva's Lift MS Team | October 25, 2016
      We are very sorry for your loss, Larry. Thank you for sharing your story with the community. We're glad you're here and hope you can find comfort and support in the Lift MS community.
  • kurt | October 20, 2016
    I was first diagnosed January 2016 and still find it hard some days to understand. My symptoms started late 2015 so it is a lengthy process for diagnosis. I have had to stop doing some things which is hard for me to handle but if I over do things I pay for it dearly. I love my wife and children but I don't think they fully understand what I deal with daily.
    • Teva's Lift MS Team | November 08, 2016
      We're so glad you're here and have decided to share your experience, Kurt. It sounds like you are going through a difficult time. The blog post "MS 101: How to Talk about MS" may be able to help you begin talking about MS with family and friends when you're ready. It can be found here: https://www.liftms.com/action/talking-about-ms. As always, we recommend speaking with your health care provider if you have further questions.

      You may also consider checking out the Lift MS Facebook page. It is filled with people like you sharing their stories. www.facebook.com/liftms
  • Karen | October 28, 2016
    I am a strong mom of 5, with rms, I wish my husband was more caring and involved in my life, my 4 sons are grown, and I have been blessed with my beautiful daughter, 13. She is my heart, we do everything together. I just wish I had with my husband what I have with my daughter, caring and sharing and quality time. I just wish, everyone could understand.,,..
  • Debbie | October 30, 2016
    I like this..
  • Janet | October 30, 2016
    Thank you very much for sharing your heartfelt story! While I myself do not have MS, I do have a special second cousin who does. She was diagnosed at the age of 35, and I only have one word to describe her; REMARKABLE! She is now 82, a widow & lives by herself despite the fact she is wheelchair bound. She actually WANTS it that way and she's living life to the fullest!
    • Teva's Lift MS Team | October 31, 2016
      What an inspiring story, Janet! We appreciate your contribution to the community.
  • Carole | October 30, 2016
    Paul,
    Stay strong with your wife always. Make special time for the 2 of you and celebrate the successes of the week.
    My husband left me for a younger able-bodied person. He could not handle my diagnosis even though he knew of it before we married. I have now had MS almost 30 years.
    I wake each day wondering what parts of this body will work and which parts won't work.
    • Teva's Lift MS Team | October 31, 2016
      It sounds like you’ve been through a lot, Carole. We’re glad you’ve reached out for support. Let us know how we and the community can help.
  • Randall Laue | October 30, 2016
    What is RMS?
    • Teva's Lift MS Team | November 21, 2016
      Hi Randall, our blog post "MS 101: What is Relapsing MS?" provides information on RMS that may be helpful to you. You can find it here: https://www.liftms.com/education/relapsing-ms

      For specific questions about your experience, we recommend reaching out to your health care team.
  • Wendy | October 30, 2016
    Thank you for sharing your story! My husband was diagnosed in 2004 with MS while on active duty in the army. We have had alot of issues with the disease but we will not stop fighting. We do have alot of great family support!! 
    • Teva's Lift MS Team | October 31, 2016
      Thanks so much for sharing your story, Wendy.
  • Raymond López  | October 31, 2016
    I understand what you are going through. ..was married in 1968..I was aware she had MS...the recurging was the hard part to deal with at first but we made adjustments and lived to celebrate 47 years. ..she passed in 2015...it was a wonderful life...would not trade one moment of it...so you hang in there and love every moment you share...I wish she was still here. .... Peace to you both....
    • Teva's Lift MS Team | November 18, 2016
      We're very sorry for your loss, Raymond. Thanks so much for sharing your experience. We're glad you're here and hope you can find comfort and support in the Lift MS community.
  • Susanne | October 31, 2016
    I too have ms. I just found out last year. I know very little about this disease.
    • Teva's Lift MS Team | November 01, 2016
      An MS diagnosis can be an emotional experience. It's great that you're here and we hope you find others in the Lift MS community, who can relate, Susanne!
  • Lee | October 31, 2016
    I was diagnosed with MS over 16 years ago. I read a lot trying to understand the desease. The stuff I read in blogs and discussion rooms was so bad. I wanted to post this for all those newly diagnosed. I work a full-time job, I workout everyday, I have almost no symptoms. I am not telling this to brag or make others feel bad. I am posting this so people know that this also happens with MS.
    • Teva's Lift MS Team | November 01, 2016
      Thanks Lee. While that might not work for everyone, we appreciate your contribution to our community.
  • michele | October 31, 2016
    I am the ms'er in the family, my husband and daughters have been my caretakers. I couldn't have asked for a better group. This disease has made us stronger, and my daughters wonderful caring women. My advice, don't did it alone! MS can be a blessing, in bringing families together. Thanks to my amazing family
  • Gina | November 01, 2016
    Beautiful story & very helpful. Helps me believe we can get thru this. You r a wonderful kind person. Thank you!
  • Melissia  | November 01, 2016
    Thanks for your article and advice my husband actually sent this to me, I'm the one with MS, take care of your time together it's priceless, God bless.
  • Allen Antonsen | November 03, 2016
    I just wanted to say thank you.

    So few people even bring up MS because Cancer and other things dominate the airways.

    My wife has MS but, she is amazing nobody but, me knows what she really goes through.
  • PK | November 04, 2016
    My husband of 30 years divorced me when learning of my RMS diagnosis. He was so afraid of being a caregiver. I wish he could have met you.
  • Friday | November 11, 2016
    Great article Paul
  • Catherine  | November 11, 2016
    I have MS. Recovering from a broken wrist caused by a fall from my imbalance has given my husband, my caregiver, a greater amount of stress. He is smothering in his goal to keep me safe. Thanks for your article.
  • Christy | November 13, 2016
    I wish I would have known somebody else with it. I spent the first 13 years pretended I didn't have it. I didn't take my meds or do the things my Dr told me to do. I pay the price for that now
  • Cindy  | November 13, 2016
    Wonderful post.I have MS.I try to read and learn all I can.such a blessing that the two of you were together.
    • Teva's Lift MS Team | November 14, 2016
      Thanks so much for sharing your story, Cindy.
  • Sue | November 13, 2016
    I have had RRMS for about 35 years. Heat and fatigue are the two things I avoid like the plague. That said I am a retired senior. I take care of 6 horses and ride. Staying active while staying aware has kept me going.
    • Teva's Lift MS Team | November 14, 2016
      Finding an activity you enjoy can make all the difference, Sue! Be sure to consult a healthcare professional before starting any exercise program.
  • Harriett | November 13, 2016
    Thank you for sharing.
  • Larry | November 13, 2016
    Bless you for your encouragement. It has been a long ride, a bumpy one, caring for my wife, since her MS appeared. I, fortunately had already been a counselor in another feld, and what helped s lot was loving the person while hating the disease. I'd so much like to see this disease defeated!
  • barbara mahan | November 13, 2016
    Thank you it helps
  • lena | November 13, 2016
    thank you for your help .sounds like a good idea, to keep track of rms
  • Robyn Black | November 13, 2016
    I wish my husband had been open to learning about my MS and the resources open to us both. We might still be married.
    • Teva's Lift MS Team | November 14, 2016
      Robyn, it’s hard when you can’t go to family for support. We hope you’ll lean on the Lift MS community for support when you need it.
  • Lydia | November 13, 2016
    You are so awesome Paul for taking care of your spouse. I'm single with MS. It's lonely and challenging.
    • Teva's Lift MS Team | November 14, 2016
      We understand living with MS adds extra challenges to life, Lydia. We’re so glad you’re here and hope you find helpful support.
  • Linda | November 13, 2016
    I have RMS and my first episode l didn't realize what l was going thru all knew was my head hurt extremely bad. That was summer of 1989 my second one had me at the ER in extreme head and that was 2009 and that's when l was originally diagnose MS but l still didn't have the other systems of MS l had legions on my brain. I just started have numbness 2016 still confused!
    • Teva's Lift MS Team | November 14, 2016
      An MS diagnosis can be an emotional experience. It's great that you're here and we hope you find others in the Lift MS community, who can relate, Linda!
  • Shalonda Frederick  | November 13, 2016
    I've been in this battle 14 years. I always never give up.
    I applaud you. Teamwork Makes the DreamWork -
  • Bill | November 13, 2016
    I have to say I am a beginner when it comes to understanding RMS. Like you I live with a person who I think is the strongest person I know. After she was diagnosed we.both struggled with the shock and disappointment Sadly I must say I do not understand enough and I must work harder to become a partner and caregiver.
  • Kris | November 14, 2016
    I have RMS but I am the caregiver, first to my late husband who had RA, COPD, and emphysema and was in a wheelchair and now to my 89 year old mother who has dementia. I was working full time as a server until 3 months ago when I quit my job to take care of Mom. I'm glad to have found a way to reach out to others because I can never go to the seminars that I'm invited to. Thanks for contacting m
  • Judy | November 14, 2016
    Thank you for your inspiring story. My daughter was diagnosed last year and it's been difficult for all of us especially her. You are an inspiration for all....god bless you and your wife!😇
  • Roberta | November 14, 2016
    I've only been diagnosed for a year and I'm still trying to figure things out but reading your article is is prove to me that I can do this even though I don't have a spouse or boyfriend I have a team around me who helps when they can and that is a good thing
  • Jackie  | November 14, 2016
    I am new to this my husband is great. He keeps me up if I feel bad about things he makes me laugh.
    • Teva's Lift MS Team | November 15, 2016
      What an inspiring story, Jackie! We appreciate your contribution to the community.
  • Angela | November 14, 2016
    I had my first relapse last year. I have found out many people don't understand that I can't take care of my neighborhood like I used to. My fatigue keeps me from even cleaning my house but I make due. I now understand the meaning behind RRMS even if my family doesn't.
    • Teva's Lift MS Team | November 15, 2016
      Angela, it’s hard when you can’t go to family for support. We hope you’ll lean on the Lift MS community for support when you need it.
  • Mark | November 17, 2016
    My wife has been diagnosed for 30 years. We have and continue to face many of the issues you describe. She uses a walker at home and a scooter when we travel, and needs the afternoon nap. But while there are days that I have to do more around the house or help her do something, I have never thought of myself as her "caregiver" -- I am her husband, and she is my wife.
    • Teva's Lift MS Team | November 18, 2016
      Thanks so much for sharing your story, Mark.
  • Thomas | November 21, 2016
    My wife was was told in 1986 that she had R&R ms. She never complained. I was her husband, she was my beautiful wife.i knew i had my work cut out for me. I cared for her in everyway.She passed away in 2004, i loved her and miss her every day, and i would fo it all over again the same way.
    • Teva's Lift MS Team | November 22, 2016
      Thanks so much for sharing your experience, Thomas. We are sorry for your loss; it sounds like you have been through a lot. We're glad you're here and hope you can find comfort and support in the Lift MS community.
  • John Nielsen  | November 28, 2016
    My wife and I dealt with her RMS for 35 years until her passing in 2009. Your 5 are pretty much spot on. I would add a sixth. Prepare diligently for the inevitable financial drain that occurs in advanced cases, when the patient needs 24/7 care, the spouse is not yet able to retire and caregivers must be hired on workdays.
  • Mary Ellen | December 08, 2016
    Thanks for such an inspiring view. I'm 2 weeks in to diagnosis.
    • Teva's Lift MS Team | December 08, 2016
      We’re so glad to hear our community has been helpful to you, Mary Ellen. You’re part of what makes this blog great!
  • Roosevelt | December 11, 2016
    My wife J, has early symptoms of MS. I am mindful of the consequences of the diagnosis ahead.
    • Teva's Lift MS Team | December 12, 2016
      We are so glad you’ve chosen to share your experience with us, Roosevelt. Please keep us posted on your wife’s progress, and best of luck!
  • Anonymous | December 12, 2016
    Great article!
  • Alisia | December 27, 2016
    You're story is beautiful and inspirational. You are both lucky to have each other. Great support from family and friends I'm learning myself is a must! God bless both of you !💗
  • Linda  | January 04, 2017
    I read your articles and agreed. My husband was diagnosed with Rms In 95. We have done well all these years. He is now in a wheelchair motorized and has a vehicle to drive. Life is good.
    • Teva's Lift MS Team | January 05, 2017
      What an inspiring story, Linda! We appreciate your contribution to the community.
  • Marilyn  | January 05, 2017
    I too understand how to enjoy the moment instead of the situation I had to learn this
  • Kelly | January 06, 2017
    Thank you. I'm the patient my hubby the caregiver. He knew of one of my rare conditions (diagnosed 2014) when we married, I was finally correctly diagnosed 2015 with my 2nd rare condition after our marriage. We relate to all your thoughts. The one we struggle with is working within our reality. Still learning! And acceptance is hard, but God helps and we'll get there!
  • Ron | January 08, 2017
    It is so hard when it is happening to a loved one. You need to rest, keep active and no one knows Owsley how hard it is to be a caretaker unless they have been one. Find out what social services is available to you for help. Do this immediately. God bless.
  • Steve | January 09, 2017
    I took care of my disabled wife for ten years before she passed. I did not have help, or meet interesting people, as the article suggests. People whom were friends turned away and could not be bothered. Looking back, I had to be strong, comprise my own health, leave my job, and be ready for the next tragedy. The article does not reflect my experience.
    • Teva's Lift MS Team | January 10, 2017
      It sounds like you’ve been through a lot, Steve. We’re glad you’ve reached out for support. Let us know how we and the community can help.
  • Victor FrOst | January 10, 2017
    A care giver since 1998 wife with ms working have little support from agencies
  • Pete | January 11, 2017
    Good Day, Paul -

    Many, many thanks for sharing this information. It is very helpful and encouraging!

    Pete
  • Jim | January 13, 2017
    Wow - God must be in this place - "This Holy Place" - Where Paul and His Wife are Sharing Their Journey, May God Bless Them and Bless "Us All" - Amen and Thank You Lord,
  • Luvene  | January 15, 2017
    I'm the caregiver for my 92 year old mother. I stand with you in saying....it's not an easy task. Pray for me. Thanks
  • magdalena | January 15, 2017
    you are such a wonderful person so supportive to your wonderful wife continue your job taking care of her .may the good Lord continue to give you more strenght and faith in him. God can make a miracle .God Bless you!!!!!!!
  • Jenny | January 18, 2017
    Thank you for your helpful ideas I needed them
    • Teva's Lift MS Team | January 19, 2017
      Jenny, it’s great to hear you enjoy the community we’ve built here! We welcome your contributions to it.
  • Roger Turner | January 18, 2017
    I'd like to know more about the exercises you do. I assume your wife is walking? Does she do water aerobics, or walk in water up to her chest? Can you clarify Relapsing MS--is that alternating periods of high activity followed by weakness?
    Sorry for all the questions.
    • Teva's Lift MS Team | January 31, 2017
      Hi Roger, We're glad you're here. For more information on relapsing MS, you might find this post helpful https://www.liftms.com/education/relapsing-ms. Exercise can be fun and is a great way to stay healthy and help manage your MS symptoms. Remember, it is important to always consult your doctor before beginning an exercise regimen. Best Wishes!
  • Derrick Banks | January 23, 2017
    Informative
    • Teva's Lift MS Team | January 24, 2017
      We are happy you are finding value in the blog, Derrick! Please continue to check back for more info.
  • Sherry | January 23, 2017
    I to have RMS and everyday a struggle when people don't understand
    • Teva's Lift MS Team | February 02, 2017
      Thank you for sharing your experience, Sherry! We hope you continue to lean on the community for support. Best Wishes!
  • Mike | January 24, 2017
    It is encouraging to know we are not alone. My wife and I care for our handicapped son
  • Diana | January 25, 2017
    God bless you and your family , I am a caregiver to my mother, and it it hard watching her struggle each day .
  • Gerri walrod | January 27, 2017
    What does "R" in RMSstand for?
  • Donna | January 28, 2017
    Thank you for your beautiful article. I was my husbands caregiver for many years. His illness was hard on both of us but it was a privilege to support him through it. His unfailing humor helped the most. We both learned, grew and became much better people from dealing with his horrible llness. Thank you again for being a voice and support for caregivers.
  • Jeff P | January 29, 2017
    Hi Paul. Thanks for sharing. My wife was diagnosed with MS in 2004, has tried several treatments, divorced her sorry ex in 2010 and then married me in 2012. We actually graduated HS together in 86'. Small world? I've been her full time caregiver & a new step-father since. Finances are tuff. Is there any type of compensation or tax credit available that you are aware of? Anyone? Thanks again.
  • Connie | January 30, 2017
    I have had/dealt with MS for almost 25 years. Your website is one of the few I have seen with such a positive and realistic tone!! A few things I have learned:
    1. Get with a strong and knowledgeable medical team who works with you not AT you!
    2. Do not let MS own you. You own MS. It's a part of my life but does not control my life. Be knowledgeable and realistic about what you are experiencing!
    • Teva's Lift MS Team | January 31, 2017
      Thanks for your kind words, Connie! Comments like yours fuel our efforts to build a helpful community.
  • Becky | January 30, 2017
    You didn't put in the most important one. I learned this from a cousin who is a caregiver for his wife whose childhood polio returned. Take care of yourself first. Take time for yourself. You can't do the person you are caring for any good if you get run down and sick.
    • Teva's Lift MS Team | February 10, 2017
      Thanks Becky! That's great advice.
  • Joe | February 03, 2017
    Kudos to you!!
  • Fanny | February 04, 2017
    Thanks. I after 4 years are burning out. Your tips helped life me this morning. Being in 36 year relationship i am trying to live breath and love through this part of our adventure. Thanks again.
  • Monica | February 05, 2017
    I haven't gotten to this point to an extent. But, because my husband is much older just want to prepare
  • Dale | February 06, 2017
    Paul,
    I have a friend with MS and his wife is getting a divorce from him. She must not feel as strong as you are. May God bless you and your wife.
    • Teva's Lift MS Team | February 07, 2017
      Thanks so much for sharing your story, Dale.
  • Philip | February 08, 2017
    Thank you from a 5 yeat caregiver for another condition. Caregivers need both education & physical therapy. My first year as a caregiver gave me a lot of needless muscle (and financial) strain because I didn't know:
    1. the proper equipment to get.
    2. the most efficient ways to assist my wife.
    3. the proper exercises to strengthen muscles which are needed for unfamiliar caregiving duties.