Hello, I hope I’m in the right place. I’m looking for an online support group for spouses of people with ms. My husband has ms and I am having a very hard time because now that his mobility is becoming more impaired he refuses to use a cane or wheel chair to get around . I’m at a loss and feel very alone because he desperately needs help but he is too proud to use assistance. He is constantly tripping and falling and when he walks up stairs I know it’s only a matter of time before he tumbles. I feel so alone in this and when I try to talk to him he brushes it off like he is fine. Has anyone else gone through this that can offer some insight?
Respectfully, a wife who is struggling
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Alone21
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Welcome! It is so very difficult when a spouse will not admit he or she needs to use an aid for balance or walking. I personally did not have any problem with using one, because I was very tired of tripping or falling! I do not know what others might say, but perhaps your husband may just get tired of losing his balance and want a cane or other device. I use a quad cane, when needed, it provides more stability than a regular cane. How old is your husband? I hope you will continue to visit here, we are a good bunch of loving people 😊
I'm sorry you feel isolated and that your husband is struggling with both MS and his self image. He may not be willing to reveal his weakness, but perhaps it would help him to connect with the men who visit this site. There are several men who blog through MS News Digest (another site that posts research); each of them is challenged differently. John Connor, a writer/comic in the UK is quite disabled now by MS and Ed Tobias less so, but often dependent on mobility assistance; there are feature stories in the magazines published by MSAA and NMSS. Several men have written books about their MS experiences; these can be borrowed from the libraries maintained by the societies as well as other facilities. I realize this may not give you the support you need in dealing with his resistance, but the more we know, the greater our ability to make the best choices for ourselves. I wish you luck and hope you'll monitor here; you may connect with other care givers.
I don't know if I can give you exactly what you need, but I can give you a perspective from a man/husband/parent living with MS for over nine years.
I was diagnosed with RRMS in 2012. I have been in a very slow physical decline for most of the nine years. MS affects the left side of my body. I have slight foot drop, left side clumsiness, and my speech isn't as clear (I find people ask me "what?" quite often after I speak). I really have to concentrate on the words I use (especially words with three or more syllables). To me, I have slurred speech early in the day - and I haven't been drinking! I have been in technology sales my entire career. I sell software now, but it is more difficult with my speech issues and I am down to typing with one finger on the computer keyboard with my left hand.
We live in South Carolina. We bought our house back in 2006. I didn't know it at the time, but living in a one-level home with lever door handles turned out to be a very good thing. Stairs are not my friend! Although I do not deal with stairs in my own home, when I am out and about and have to use stairs, it is never a great experience for me.
My oldest child (daughter) got married at the end of 2019. The walk to the alter started with stairs - I had to wait at the bottom for her for fear of tripping during the ceremony. But at least I could still participate in walking her down the aisle!
It isn't easy being in a slow decline. I don't want something that I consider simple to defeat me. But MS being the "silent" disease makes it mentally tougher for me. And others really do not understand what I am going through. Also, my wife is a nurse. She asks me quite often if I am OK regarding something. But there are things she doesn't even notice (no fault to her - MS is very silent).
Nine years ago, I was scared after my diagnosis. But I said to myself and others that this is just a bump in the road of life. I firmly feel that way, even though I may graduate to a cane/wheelchair one day.
During the pandemic, I was one of the lucky ones who kept working through it and was able to work from home. No one could see my deteriorating typing skills and me bumping into walls while rounding a corner. The biggest challenge for me was being on a Zoom call and being articulate. Now that I am heading back to the office in early June, others will get to witness the clumsiness on a daily basis!
I do not know if this helps, but maybe you will find some nuggets in this that will help. Take care and good luck to you and your husband!
I'm a 43 year old male with primary progressive MS. I went thru the same thing with my now ex- wife. I should've probably used the canes, the walker, and now the "Stephen Hawking" type power wheelchair sooner. Before MS I was crazy active. Was an electrician. I even built an Astronomical Observatory all by myself, which was a life long dream and hobby. I was super independent and never asked for help. I always considered myself strong and brave. Using the walking aids was soul destroying for me. But now, and especially going out in public in a power wheelchair, I realize it is perhaps the bravest thing I have ever done. The realization of that has increased my self worth to even higher levels then before. I only wish, and hindsight is so easy and 20/20, that it did not take a broken hip, tailbone and countless bruises to get there. Plus a divorce! My ex was a ph.d in theology and she apparently couldn't do it either. 🙃 Fear is a horrible thing! It makes us who we are not and don't want to be. I'm sure he's very afraid inside cause he probably feels what is coming and doesn't know how to fix it. We guys always want to fix things. Before MS I could fix anything. Now I think "The Universe" or God or whatever you call it yourself, gave me a problem even "I" cannot solve. I'm not so sure he/it wants me to solve it. I think he/it wants me to be ok with asking for help, which I never did before. I will pray for you guys....
If he hasn't been to physical therapy I highly recommend it. Or if he has been but it has been a while he should go back. I saw PT when I was first diagnosed and not having much motor dysfunction. My foot drop slowly got worse and then when I ended up working remote for a few months I lost some more muscle strength due much less walking. I went to PT again and got an AFO (Ankle Foot Orthotic) brace that fits in my shoe and straps to my leg under my pants (others can't see it) which has helped tremendously. I used to trip a lot before getting it. The PT can also recommend a cane or any other assistive device if needed. Maybe if a professional is the one recommending he will be more accepting. Plus most people don't use a cane correctly if they aren't shown.Those of us with MS typically try to maintain our independence as long as possible and try not to ask for help. For me I think I subconsciously know I will need a lot of help eventually so am trying to not ask until it is absolutely necessary. I know my husband is willing to help I just don't want to be a burden. I imagine it is likely more difficult for men to ask for help physically.
Another idea is to participate in some MS events such as a MS walk where he can see other men using assistive devices and normalize it for him.
I am not sure if there is a caregiver only forum but we do have some here and you can also get feedback from those of us with MS for an idea of our psychological and emotional reasons for our stubbornness and other behaviors.
i don't have a spouse with ms. but I do have a stubborn husband! mine will not listen to me but he does his doctor,maybe his dr give him a walking test.and talking to him can tell him how much a band broken hip would put on you.my hubby has heart failure a he needs walking asst at times.men think they look weak i guess using asst. we need to hear from our fellows on here ,hey what's up guys?
You're in the right place. We are here to give everyone support and answer any questions. He needs to come to a point of accepting he has the disease. Me and him are exactly the same. I hate the fact I can't do things that I feel I should be able to do and then I'm on the ground and at times that I can't get up. The cane has become an important tool.
He will come around eventually. Just be patient with him and not worry as much.
He knows that he needs a cane and if I'm doing something I shouldn't be my wife doesn't worry because it's my own fault.
Ego. My husband doesn’t have MS either but he is also quite stubborn and should in fact using a walking device, (previous stroke, bad knees and persistent arthritis) but will not. I am certain it is mostly vanity and not wanting to appear weak. However he is now in PT and I do believe if the PT suggests a cane or walker to help him get around better he just might do it. (At this point he just avoids getting up and down or walking much....groaning when he gets up and sitting in one location for as long as he can.) Praying for you and your husband!
I am looking for a similar support group, but for people who are more at an EDSS of level 8.5 or 9. I need help figuring out soft foods to eliminate choking/gagging, etc., as my husband becomes worse (he's at a level 8 now). Also, what to do about bowel and bladder issues - when to use a catheter, etc. This is all new to me and I am scared that I am not up for the job.
I had the same problems with my husband. He always delayed the next aid. Right now we are in disagreement about installing a ceiling track. He doesn't want to use it because he wants to keep "assisting" me with his transfers. I want the track because the transfers reduce my independence and are dangerous for my back. We are both right. He needs to continue using his legs as much as possible and I need to protect my back. We are trying to find a happy medium. The first thing I convinced him to buy was my friend's used Pride scooter. He didn't think he needed it, but I insisted that it was too good a deal to pass up, and after we got it he quickly realized that it gave him a lot more freedom to handle crowds. When he was using hiking poles in crowds and someone would bump into him, he got scared. It also enabled him to be out all day at a museum or a festival without getting fatigued. He didn't use it around the house or at work for many years. He waited until the last possible moment to get a cane. Then, I can't count the number of times he fell AFTER he got his cane. Lots of stitches. Once he hit the door hinge on the way down and put a staple-worthy gash in his head. He started using the walker more after that. He gave up the walker himself eventually because his left arm wasn't strong enough to support him. A walker needs two arms and he was starting to fall even with the walker. By that time, he was used to having to move to the next assistive device. But he has fought many years to keep doing his own transfers. We found that poles next to the bed and toilet work really well. It's good that your husband wants to fight. The fight will keep his muscles strong even though the falls are dangerous. Better not to give up. It may take a few falls before he gives in to the cane.
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