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Wife's RARE MS beating me down

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    On the go way too much lately. Found out in late August DW has cataracts in both eyes. Told by the eye Dr. that the ACTH and other steroids she received when first DX acted like "yeast" and just fed the cataracts.

    We just got back from Chi-town where we saw a Neuro-Opth to get a 2nd opinion. Concerned about her losing all up close vision. He checked her over and told us that it would be OK to go ahead. Taking the lens out gives you a clean slate so to speak and her vision would be just fine needing reading glasses. Another problem faced and beat down.

    I can't say this too much, this is my partner, my love and I will do whatever I can to fight this thing.

    On a side note I want to share this with all of you. On Sunday my son called, said something came up he had to talk to us about, so could I go by "Mom" and put the phone on speaker.He told us his DW was "pretty sick the Dr. told her she had a "virus", but not to worry it would be gone in about 270 days. So don't worry Grandma & Grandpa."

    The look of joy on my DW's face was beyond all I could imagine. She told me that when she was Dxed all she could think of was she would NEVER enjoy a "normal" life and now she's going to have a grandchild. Seeing her and hearing the love pouring out at that moment made this whole fight for 35 years worth it.

    The rewards we all will get is worth it, hang in there, "don't give up, don't EVER GIVE UP"

    best to you all my "family" here
    "Grandpa" Mirey45


      Mirey I just wanted to say thank you. It took me almost 2 months to read this entire thread and at times I think I read the same posts 4 or 5 times lol. Crazy MS. I was just dx in June 2011 and reading this has given me hope.

      Not only hope that my fiance will marry me, but stay with me and fight along side me against this horrible monster. I can only hope that he can have the same compassion and drive to continue through anything we may face. You are true inspiration and an amazing, wonderful person. Your wife is so incredibly lucky to have you.

      So again I say thank you for sharing your story and your battle against this monster. I'm so happy that your wife is improving and I hope it continues. Congrats on the wonderful news, I'm sure you'll be an excellent grampa. Good luck to you and your family.



        Mirey- thanks for sharing your story! I'm glad your DW is getting better. And also a big THANK YOU for reminding me to never give up, no matter how hard life gets. There is always hope- for without hope we have nothing! Hey- congrats to you and your wife on your upcoming grandchild!!



          Wow reading this from some of you that have experienced it first hand as well as as the caregiver to someone with MS.

          My Mom has had deep depression and attacked verbally for decades. I now know this is part of her MS. She can track back 30 yrs to the start of her MS but the true physical decline from the MS started 5 yrs ago.

          I am deeply saddened as I have lost my Mom my friend.

          I will never go for walks with her again but her rages and anger have taken her farther away from me than I ever imagined.

          I know it is the MS and not my Mom that hates life, her family. It still sucks.


            You're a hero

            My mom's MS has gotten severe and my dad is her main caregiver. He is really getting worn out and my mom is in denial about her condition. I am here trying to figure out how to help them both.

            Hats off to you for your dedication to your wife!


              Originally posted by overboard57 View Post
              My mom's MS has gotten severe and my dad is her main caregiver. He is really getting worn out and my mom is in denial about her condition. I am here trying to figure out how to help them both.

              Hats off to you for your dedication to your wife!
              Overboard, I have read your other posts also and I can only extend what ever support I can offer to you and your parents.

              The pressure on your Dad with your Mom's denial has got to be taking a toll on him both mentally as well as physically. When Father's day rolls around I would like you to tell him "Thank You". Not many partners stay around when this DX is given, he stayed for your Mom, you and anyone else he needed too. You sound like a very caring, loving person just think what might have happened had he not been there to help raise you, had not "picked" up the slack.

              My son had a job interview about a year ago, one of the questions to him was "Who are your hero's"? He looked at the interviewer and answered right away, "My Parents. My Mom has MS, My Dad spent his life both taking care of her and making sure my sister and I were raised right, taken care of, and together they worked hard no matter what that we both graduated college, and became the best we could be".

              Be proud of him, he sounds like he did a great job.

              I hope your Mom will "wake" up, and allow the plans for assisted living to go through, maybe your Dad can contact "city" services in his town and find someone to come in and help if the other thing does not work out. You might also contact their church, and see if you could get some volunteers to come in and help, my DW's Aunt had that help with her MS.

              Good Luck, Hang in there Overboard, there is always a way.

              "Don't give up, don't EVER give up"


                Finally got the cataracts done in DW's eyes. Her vision is back to 20/40. She was considered blind in her left eye a 20/4000, for years all the eye doctors did was give her a stronger RX and tell her it was due to the MS, never even looking for cataracts, until I took her to the Dr. that did my eyes. He looked at her and asked if she ever took steroids for the MS. When told her treatment over the first 10 years was ACTH, he had his answers. He told us that steroids "feeds" cataract production.

                For the first time in over 30 years she does not need glasses except to read, it's like living with a "different" person, I got so used to her wearing glasses. So I guess what I am saying is if your having vision problems, check for cataracts if found get them done, it will be one of the best things you can do for yourself and partner.

                One more thing, this is to all the partners going through hard days dealing with there loved ones and the MS. This "monster" is not "kind" it will wreak havok and pure HE** not only on the one with it but all their family and friends. You are NOT ALONE, we all have been there, and trust me you can get through it. Almost 4 years ago I was dreading that I came to the point in our life that it was time to look in to nursing homes for my DW, her MS Dementia had gotten that bad. I found this sight, vented, got support from the "beautiful" people out here and found the strength to keep up the fight even harder then before. It all is working out, prospects are even better then I could have thought.You can do it, you can beat this.

                " The world is a very mean and ugly place, and it will beat you down and keep you there if you let it. You, me don't nobody hit as hard as life. But it ain't about how hard you can hit, It's about how hard you can get hit and keep moving forward. "

                My best to all my "family" here 3 more month till our Grandbaby gets here, buy the way it's a little girl, is Grandpa gonna spoil her.


                  Such an interesting thread

                  Wow I am currently one that feels that I am losing my mind as well. The last 17 yrs I was a computer analyst for medical billing and have worked in hospitals and private care offices. I could compute and analyze just about anything until a couple months ago when I began slipping to the point I resigned from my position for the largest cardiology group here in Pensacola. Now on a daily basis, I forget every thing to the point that I have calendars every with dates and times spelled out on what days I have to do work. My forgetifullness causes me to due several things over and over again to ensure that I did them such as lock my car, check the doors in the house to ensure that they are locked, etc...

                  I also lash out verbally at my boyfriend in anger for no apparent reason. I heard somewhere that anger is derived from fear and I believe this to be true b/c most of the time when I lash out when I am scared. Most of the time I am scared that I am losing mind and wonder if he will take care of me when I do. But even if he would, I know that he can not take care of me the way that I would and even with that being said its not only him b/c if I had a care giver or ended up in the nursing home, they would not care for me like I would. It is the most intense scary feeling I believe that I have and believe me I have been in some very scary situations but this is my well being. What is life going to be like if I lose my mind or what would it be like for you to lose your mind and up to the point of losing your mind what would your deposition be like? I always try to put the shoe on the other foot and try to see things the way the person has to be seeing them and I can tell you that this is such a crazy scary thing.

                  Anyway you have done a great job in caring for her and should be commended for that b/c there are not many that would stick around in your situation. I know there may be a point when my boyfriend may walk and it just adds to the other fears that I already posses which just adds to my anger.

                  Best Wishes!



                    Mystery 37

                    I dont mean to sound insensitive but try putting your fears in Jesus hands and dont take them back. God will never leave you and remember his grace is enough. I used to be very fearful. I actually told my wife to leave me three times, the last time i thought she was going to hit me so i stop. I caught her looking at hospice home care for the day when I will need it. I know I am very lucky, but if your boyfriend doesnt care for you with your faults. especially M.S. and that one isnt our fault, he is not worth having around. so please trust me, put your fears in Jesus hands, its not easy I will be honest but he will take care of it for you. Just have faith and be thankful.



                      Just got her latest MRI report back, No change at all, this "monster" has not advanced one bit since the LDN started over 2 years ago.

                      Down to 7 weeks till our Granddaughter makes her arrival, her sister's and SIL's threw a shower for the parents last month which we attended in Chi-town. All the family could talk about is how "good" she's doing on this treatment, and with the cataract's removed.

                      In the last 3 years both of us have come a long way in fighting this. We WILL NEVER let it beat us and win. I know it's a hard fight for us all, but you can fight back. Yes you may have to "hit" bottom to get there but you can make it. If we can, anyone can do it.

                      Again I say to you all my "family" out here, " Don't give up, don't ever give up."


                        I would like to wish a Happy Father's day to all the men out here. Being a Dad is one of the toughest jobs any of us can do, and when you add this "monster" to the mix it can really "pile it on" no matter what side you have to face it from.

                        Growing up one of my "idol's" like other boys of my age was John Wayne. He always gave you the feeling to never quit no matter the odds, keep fighting. I say this to all of you remember that keep fighting, you will win.

                        Life is tough more so with this we all face everyday. But there are rewards, for me it's 2 wonderful children and soon a granddaughter.


                          I just want to share this with all my "family" out here. Last night a new branch on our Family Tree arrived. Madeline Elizabeth arrived at 7:21 PM. My son and his wife plus baby are doing fine. She was 8 lbs 3 ozs.

                          I just wanted to post this so that all of you who feel like this "thing" is getting you down or even worse, you can beat it, get the better of it. My wife never thought the day she was DXed she would ever see this day. We dated, fell in love, got married, and fought this head on TOGETHER had 2 children and now a Granddaughter.

                          Hang in there all no matter what, you can do it.


                            God bless all the caregivers who are sometimes not given the notice they so much deserve! My MS fortunately hasn't affected my mind (yet) but the weakness in my legs has forced my husband to accept more responsibilities, as you well know. This MonSter not only has been life changing for me, but I recognize how it also is affecting him. He also never complains. When I was first dx'd I told him he "still had time to run" but he told me he wasn't going anywhere. I find myself apologizing for what he has to deal with because I know he didn't sign up for this. We've been married 30+ years and he has dealt with depression on and off over the years as well as being a recovering alcoholic for more than 20 of those years. I see him losing interest in doing some of those things we used to do together because some of them were things I would help him with but cannot any longer. It truly breaks my heart and I'm always worried that the stress of what's in store for us down the road may trigger a relapse.

                            I pray that the Lord gives him the strength to handle the challenges that are ahead of us, and will keep you and all the caregivers out there in my prayers as well.

                            Hang in there...and vent all you want out here.


                              Let me tell all of you, these last 8 months have been busy to say the least. Hopefully I have time for one of the best things ever, this forum.

                              Moved in October to a smaller home in a senior complex, son and family moved at the same time to Phoenix for his job, Wife's family all got together for the time in 16 years, last time was when her Dad died. 38 people 4 Generations together in Chi-town at Xmas. Great for her Mom to have us all there.

                              Now for the best news, DW had her yearly MRI and Neuro visit within the last few weeks. Happy to report that in the 3 years of LDN 3.0 the MS has not advanced at all, no new lesions no change in the one's already there. Even the Dr. was pleased as to how well this drug is working for her.

                              It's been a long road, and yes it still is a long one coming but there is hope for all of us here dealing with this "monster", don't ever give up hope. If you keep looking, never quit, keep that chip on your shoulder and ALWAYS say to your self " Your not gonna win MS, your never gonna beat me down, not today tomorrow or EVER. I WILL WIN"

                              All of my "family" here, enjoy the coming spring, summer and all the great days we all have to look forward to.

                              P.S. Granddaughter turned 9 months old and celebrated it by showing her Mom & Dad how she can walk. Little "stinker"



                                It appears you are "complaining" and that IS OKAY!! You need to "vent", get these burdens off your chest. Is there a therapist you can go see? It REALLY sounds like you need one, to talk to and get all this "krap" OUT of you.

                                Most work places have "employee health". Call your works EAP and go see one of their therapists, to get you started.
                                Live simply. Love generously. Care deeply. Speak kindly.