Hey, to everyone reading, and know my love is extended to you all.
I am desperate. My fiancé was recently diagnosed with SPMS. He is 43, has children, older and under 7. His left arm and hand, his dominant arm, does not work and is in pain. His right arm and leg are beginning to have issues. He falls sometimes, bumps into walls when he walks. Can’t do stairs. Drops things. Cannot run anymore. Suddenly falls into paralyzing sleep out of the blue, sometimes. Memory failing. Exhausted. Works in the heat all day. I take care of him when he gives out completely. He just finished steroid infusions, will be getting on DMT soon. He will not change his routine, said he refuses to get extra rest, will never change his diet, never do any exercise, will keep working in the heat. He said he resents me asking him to please make some minor adjustments, that I’m treating him like a cripple. He will not do anything the doctor has recommended except medicine, and told me the only thing detrimental to his health is my mouth telling him to please make lifestyle changes. What can, should, I do? Please help, anybody. I can’t imagine what he is going through. I am devastated for him, scared for his well being, and I don’t know what to do??
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Wanttoknow432
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If I may venture a few suggestions, I’ll try. I think it’s important to understand that this diagnosis is hitting him very hard. His symptoms are intense, and he may feel all his control slipping away. It may take him a while, or even a long time, to come to some sort of acceptance.
It may be that there is little you can do to hasten this process. It will be on his terms. It’s obvious that you care deeply for him and want to help, but you may need to allow him time to make adjustments and decisions and just be supportive of his choices. He may be very frightened to change his work, but perhaps you could get a cooling vest that he could try. He may come to a time when he sees the advantages of making better choices, but you can’t do it for him. Can you love him unconditionally? That is something that will take great strength and determination on your part, but will help him so much, even if he seems to spurn it.
Thank you. Thank you, so much. Thank you for taking the time to respond to me, to help me. You write beautifully, and everything you say is truth in this situation. I cry every day, when he can’t see me, for him. He said he would be angry and would not be with me anymore if he ever saw me cry. I absolutely cannot imagine what he is going through trying to process this. We have been together for many years, his children call me, “Mom.” I know I need to back off and let him come to this on his own terms. You are so very wise, so very kind. I can, I will.. love him unconditionally. I can’t imagine doing anything else. I know it will be a battle, but I trust God to help me through it. Thank you for knowing exactly what to say to me.
Please help me with this one last piece. If I step back, ..which I know is what he needs from me...while he continues this course, and he suffers permanent damage or worse damage related to the SPMS or injury, or worse, at work (he works with, on, and inside heavy, heavy machinery)..how do I reconcile that within myself? That scares me....but I know I have to do this on his terms. This is so hard, my head and my heart feel so torn, so confused, so desperate to know how to move through this in a way that he feels so loved, so supported...yet, so far, I feel like I have and am failing him..and he doesn’t need any added stress, for certain. I want to love him the way he needs..I need your words on knowing how to move through this knowing that loving him the way he needs could put his health at permanent risk. Thank you, so, so much! It means so much that you reached back out to me!
Oh, and thank you for suggesting the cooling vest. I looked into it last week and suggested it to him...he told me absolutely not and that he couldn’t believe I would insult him like that.
I wish there were easy answers. You both have so much to process, as well as helping one another and the children. It's a heavy load, but you know Who to turn to, and that's huge. Sometimes it seems helpful to just ask what he needs, tell him you love him no matter what, and be honest about your feelings of confusion. I don't know how your relationship has worked through things in the past, but you may need to change those dynamics a bit together.
Time will help in that his symptoms will have time to settle down, he can get used the DMT and other meds, and find some stability. He may be understandably angry and confused, he may be worried about being a burden to you or his children, and worried about the future for all of you. It sounds as though he really wants to remain independent as much as possible. Over time, you both may be able to turn some of these things into positives and find a sense of balance. I hope you can keep talking to one another, though that will probably be on his terms a great deal, especially now.
You are in my prayers to get through this together. When tough times hit, it's good to remember who/what the enemy is, and cling together to fight it off, rather than let it divide and conquer you. I hope you are getting support from friends and family, for you need to take care of yourself, too.
And for the record, you haven't and aren't failing him. You wouldn't be here looking for answers if you didn't care deeply and weren't trying with all your might to figure this out. Give yourself some grace.
Thank you for being a gift of wisdom and hope. Thank you for for being a gift in my life and I suspect, in many others’ lives. Your words, your prayers...I am grateful for you. Thank you.
Greaterexp does indeed have wise words for you (and for many of us as well). We are so pleased you feel supported but we are a virtual community and there is great benefit to having support close at hand and real. In this time, be sure to take care of your emotional needs with a support group (look up MSAA and NMSS websites to see what is offered in your area) , a dear friend or supportive relative or perhaps a church group. If the idea of a cooling vest is rejected, have you tried suggesting one of the cooling towels used by athletes? They are inexpensive (my local supermarket had them on display), don't attract attention, and very effective. I have one and gave another to a friend who doesn't have AC in this dreadfully hot summer. Please stay in touch.
My heart goes out to you as I can hear your love and concern for your fiance in your words. Many of us are in denial about our diagnosis in the beginning and have to discover our limitations. The good thing is that he is willing to begin a DMT. It may take some time, but there is hope that his symptoms will calm down and he may see improvement. Many people in this forum are having remarkable results from the newer DMTs. I am so sorry that you feel so helpless.
Thank you for sending your love and understanding my way. For listening, for caring, for giving your time. It helps me to hear from you as it sounds like you are experiencing this directly, like my fiancé. He is not ready to let me inside, and I understand...I just have to move further than understanding and into doing what he needs me to do for him. Thank you, so much...for sharing such personal insight. You are a gift to my life. Thank you for the encouraging words about time, progress, DMT success. Thank you for direction, thank you for giving me hope.
Besides the steroids and DMTs, he will probably be given many other meds to help to alleviate his symptoms. Each of us is different, but it took two years for my neuro to find the right med combinations and for my body to acclimate. After that, I truly felt better than before my diagnosis. I, too, kept pressing forward at full speed after my diagnosis. Every time that I would hit a brick wall, I would get up and try again. Eventually, I made adjustments to the way that I did things. Each of us truly has to experience this in our own way and come to grips with, as they call, "our new normal". As you continue to be there for him, he will start to let you help him more and more. My prayers are with you both.
want to know, this is a tough one as is ms. I have to agree with other comments made here. "HE WILL GET IT IN HIS OWN TIME" and that time is as long asx he takes. For many of us the coming to terms bit takes a long time. Some of us a lot longer than others some of us it takes a wheelchair or accident to finally realise that we are sick. He may not realise it yet but he really needs your love and support, your strength. This is an incurable chronic condition it is hard as a active vibrant man to come to terms with. PLEASE forgive him his stupidity, we all cope differently with our diagnosis. At least he is taking Disease Midifying Therapy (DMT) keep him on it but do not expect miracles. This is a life long condition, accept that it is taking awhile to come to terms with it. And I thank you for your support, "YOU" are very good for that, stay strong in yourself and no matter what he says he needs "YOU.
Royce
20+ years Relapsing Remitting ms and yes an x wife that is not as brave as "YOU"
Oh boy, this sounds very sad for you both in different ways. They say that women can never change their men.
; they can only change themselves (and that goes for both again). Tell him that you are co concerned because you love & care for him, but calm down & stop taking so much responsibility for him. He's still a man and doesn't want to appear weak, especially for you. Are there any counselling services available round you? He may not want to go but this could help you to come to terms with the rejection. This has obviously hit him very hard. In time he may soften.
Want to know...my love and my prayers are with you both.
I was diagnosed with RRMS many years ago, and with SPMS over 12 years ago. It is scary, the unknown, the helpless feeling that you have no control over your own body, and you don't know what is next. Your fiance is a very fortunate man to have
you in his life, because you feel his pain, you love him unconditionally, and you want to help. I am glad that you have God in your life, because you can pray for guidance, for peace, and for help. Like others, I agree that the DMT may improve his symptoms and attitude! Be there with him, and for him, and know that God, and we, are too. May the angels watch over you.
This has to be tough to deal with and even harder to feel like you are not helping someone you love. It sounds like the help he needs right now is for life to continue as usual while he comes to terms with his diagnosis. It is a difficult thing to accept because no one wants to be a burden and we know the disease will cause increasing disability over time. What is unknown is how fast and to what degree the disability will be.
I ignored my intermittent symptoms for 6 months until my feet went numb for over 2 weeks and finally went to the doctor. The neurologist knew from my exam it was a problem with my central nervous system and not the peripheral nervous system and ordered MRIs. I was not ready to hear what was wrong with me during that first visit so didn't ask what he thought it was. Later that night I searched for diagnosis based on what I knew was abnormal on my neuro exam. It was scary because it could have been a brain tumor or ALS so I was relieved when I found out it was MS. I don't think I would have felt that way if I was told from the get go I probably had MS.
I am sure it is even more difficult for a man to accept he will need help physically. When he is ready there are other things to help cool other that the vests that are not very attractive. My husband also works outside in the heat with heavy machinery. He has cooling items we got at Home Depot. They have hats and shirts and towels that you wet and snap the material to activate the cooling. You can do an online search for cooling clothes too to find items that don't necessarily look different from regular clothes. He probably doesn't want to advertise his disease by wearing something that looks out of place.
Hang in there and know that you are helping him even if you don't feel like you are by just being the person he fell in love with! Give him time to adjust and then you can jump in when he is ready.
I'm so sorry for you. He's probably scared, like I was when first diagnosed. Maybe he should see a counselor who deals with MS newly diagnosed. Or call the MS society, they will be able to help. I'll pray for you.
This is important. Please get the book by Ann Boroch "Healing Multiple Sclerosis." I found out about this book here from Jazinco. She has no more MS symptoms after following this regimen for a few months. This book has changed my life. Please have your fiancé read it and read it as well. I wish I had found out about it when I was first diagnosed.
Hang in there and be patient 👍. Men can be very stubborn and like to do things there way and some have a hard time with suggestions. He probably is use to being the breadwinner and is afraid of losing his job and self esteem. I know when I was unable to work and do the things I had always done it was diva stating when it happened. Took a while before I adapted to needing help and not feeling bad about it. It is sometimes hard to understand when you are not the one going thru it and have never been so sick and still look good. Get ahold of “my MSAA.org” or call 1-800-532-7667 and get hooked up with ms one on one to help with questions and guide you. They have lots of printed material for free, get some and put it out where he will see it and hopefully read it 👍. Prayers are with you 🙏🙏🙏👍😉 Ken 🐾🐾
So many wonderful messages already. I just wanted to add just a bit. He sounds like he is going through the stages of grief. Fear with an anger reaction is definitely one of them. He may be unknowingly testing you to see if you are around for the long run. He is afraid, even if he is not able to verbalize that yet. It will not be a permanent thing but it may take quite awhile for him to process it and get past that. Counseling for YOU will be a good thing because it will give you an outlet to spew out your concerns and fears. Sometimes just talking about it to someone can help clear your soul. Best of luck for both or you.
Sometimes some people, for whatever reasons, are beyond another's ability for helping. I'm glad he's doing a DMT! Maybe a joint counceling session (tell him it's for your benefit and maybe he will get the clue without even knowing it). Maybe start implementing some of the beneficial things (like working outside in the mornings when its cooler or starting an exercise routine or eating better or going to bed earlier to get more sleep) and tell him it's for your benefit and maybe he will join in without even knowing the MS benefits.
I'm the guy whose been there, done it. 2 young kids, too busy to really even see them grow up, running 2 companies in the worst way, doing it all myself (at least it felt like it), meaning it was hard, really hard, taking 80+ hour weeks, minimum. Where did I work?, sales/management visiting boiler rooms, commercial building attics, pipe tunnels, and lots and lots and lots of very hot food processing plants & commercial bakeries. My winter coat in Chicago was a windbreaker. I did not even own a heavier one till after I "retired". But, I pushed on, and on. I didn't want to let a disease take my life. I didn't have time for it in my busy life. My neurologists, plural, another story, you run companies, supply health insurance to all your employees, everyone gets the best if the head of the company has M.S.! I went many years after my Neurologists were telling me to stop working....I wouldn't, BUT, I did take advantage of anything I could. Using Multiple Neurologists tops in the M.S. field, DMT's, cooling jackets,...even someone to drive me from site to site when I simply could not. I was stubborn. I still am. BUT, a few things I learned:
As my dad used to say, you work to live, you don't live to work. He was right. I didn't listen. And I wasn't living, and I had this M.S. thing hanging around my neck making it even harder. Understatement. He was right, I never listened.
There is no magic pill, shot, or otherwise. Not yet at least. I did them all. After many years of developing fever and shakes from DMT shot to shot, with the only break, a few hours on the last day before I had to take another shot, and start all over. I did that for years. Big deal. I was tough. That was my life. My Neuro's finally told me to stop the DMT's. As a result, a surprise to me, like a house of cards, my table full of daily meds went away. And then I went comatose?!?!?!? For years. No I was not comatose, but I felt like it. Severe Brain Fog I was told by my doc's. My story continues...and I'd be glad to tell it to you if you want....
Bottom line. Sound's like he's like I was. I eventually gave in, closed and/or sold my businesses, and went on disability. Did I like it? All those thoughts for many years of how great it would be to finally retire....Yeah, not like that with M.S!.. But, I never gave up the fight, stubborn,.. determined. I couldn't move one leg but a bit, so...that's what cane's are for, right? But I found a way to keep fighting. From comatose, to now walking a minimum of 10K steps a day. That alone was a feat for me coming from where I was. But now with changes in diet.... Yes, there is a lot on the information growing day to day on diet & M.S., just as with other auto-immune diseases....& I believe, having gone thru it all, that is the #1 thing anyone with M.S. can do for themselves. I found it out the hard way. Fighting my way back from being comatose. Problem is, very few, ever really do grasp the nutrition concept. One or two healthy meals once in a while doesn't cut it. No harm, but no good either. If you don't fully commit, it just isn't going to work.
Now, I'm not by any means perfect, but I walk again without even a cane after many years of relying on one, or a shopping cart walker..... I do some of the things I only dreamed of when still working, like kayaking, walking miles of nature trails....I do all the shopping and cooking....and I've learned to love cooking. I make fancy axx meals that are healthy and delicious. I may not be able to afford such a meal out, but I can make it!!!
My kids, they made it from the days of playing the threatening keys on the piano during shot nites, the little time they could see me, to each having great successful lives of their own. They know I have limitations, but also see I'm not the walking dead I was with M.S. as they grew up.
My recommendation, though you probably won't get him to change, if he is like me, is to let him know my recommendation is to change. The sooner the better. When he does, Yes, you'll probably suddenly become poor (relatively), I know what heavy equipment operators make, and God knows how much I'd love to have even that kind of money stream coming in, but going down the drain like I did isn't the way to go. It's up to him. Till he's had enough...... Eventually,... Then One adapts.
And yes, I was told I probably had SPMS by my Neuro's, but they held off from labeling me with that diagnosis, because at the time, there were no DMT's for SPMS, and they felt that any DMT was better than none. Now, I wonder???? Again, I am a firm believer in Drastic, Very Drastic, Diet Changes. Start by if nothing else, eliminating ALL processed food with ANYTHING added. All those things you're really not sure of, or cannot pronounce... All the many, many companies that I did so much work for, and were our livelihood, sorry. But, you're food is killing us slowly. Stick to fresh fruits and vegetables, with BITS of Lean Meat, Fish & Seafood if you like, as a treat. I love seafood. But still, scrub those veggies,....it's amazing what delicious menu's you can make without anything but veggies. Asked me that 5-10 years ago....yeah, no way would I ever agree. I now have 2 super intelligent kids, both vegetarians. One 100%, the other 90% vegetarian.
You are what you eat.
Hang in there. I don't think there is a point of no return with this disease, if you really, really try eventually. Yes, he will have more M.S. "gifts" as I refer to them, not good things, but you likely live with them forever. I have many. I've lost a few after many years, contrary to the specialists. But, there is nothing to really gain by putting the major decision day off any longer... Yes, it is live changing....but so is M.S. So what? Live with it!
All you can do is understand. The more you can, the more you can get him through the day, when it gets that bad. Till he resolves to make it better.
Sorry, I ramble.........Is that a M.S. thing? Yeah, doubt it. Did I say???....Yeah, that is!
So sorry to hear what you are going g through. There has been a lot of good advice here for you. The bottom line is you can't do anything except love him & pray for him. He may come around on his own or it may take a wee!chair but I hope not. I'm sure you've heard the saying "If you love him, let him go." The letting go is for you. You have to release him & let God take care of him. It's really hard to do but it will free you to do what he really needs you to do, love him unconditionally. He won't feel pressure from you to do what he doesn't yet want to face. Right now he is only seeing brick walls every way he turns & he is trying to fight his way out. Step back & give him the space he needs. You might want to find a support group for yourself. Prayers for you & your fiance.
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Kicked him out 3 months ago, and now he has passed away
Welcome to Texas 
RMS, PD death by acronyms 
Not how today was meant to end 
