My husband is having trouble walking

[beingmindful]

My Husband has been diagnosed with MS since 2008. He is 65, and has likely had MS for many years, but we didn't know it. He is athletic, stoic, strong and brave, or we would have figured this out earlier.

He has tried all the meds: Copaxone, Rebif, Gilenya, Aubagio, Tysabri, and currently Ocrevus. We have tried gluten free diet, dairy free diet, and now "whole food plant based." He uses a trekking pole for stability in walking.

H faithfully exercises on a stationary bike every day. He attends PT 2x per week.

Despite all of this, he sees no improvement, and I fear his disabilty is progressing. Last night, on a simple walk around the block, his legs got out in front of him, and he simply couldn't stop. He lurched forward, and fell flat on his face and head. This is a terrible, depressing development.

He will resist using a cane or other device that will provide stability. Indeed, he wouldn't even let me hold his hand last night when he was having stability problems. I think I need to have a conversation with him about another device, but he is so proud.

Thank you for listening, I simply needed to share.

[MakOP]

PT

Let PT know of this. Let them be the person that tells them.

Broken bones will not fair well.

It is just like taking a Tylenol for a headache. We just can not see the Tylenol that people take. So, the proud part is hard.

What did he do for a living or what is a favorite hobby.

Can the walk aide be rocked out to his favorite hobby, color, so that he can own it. That is the easiest compliance.

[beingmindful]

PT

MakOp

Thanks for the response. He talked to the PT today and told him about the fall. The PT apparently didn't have any advice.

My husband is an attorney. He used to ski, hike, bike, backpack, scuba dive.

When you mention walk aide, are you speaking of a specific device? He tried one I think it was called "walk-aide," (but I am not sure) that had a sort of bungee cord thing that was supposed to pick up his leg. It didn't work very well.

I think I will need to have to discuss with him a three pronged cane. I'm not looking forward to that discussion.

Thank you so much for responding. I need this support group, so that I can better help him.

[msgijo]

My husband does not have MS but he is unsteady and loses his balance often. He even has some really cool canes (hand made) but in spite of everyone admiring the canes and encouraging him to use them more often his vanity (read PRIDE) prevents him from using them . He could be 'styling' but instead he would rather stumble around falling like a drunk .

He will use them sometimes, just wish that he would let the pride go and use them more often.

No suggestions, just wanted to let you know that somebody 'got it'.

[kmallory1]

Msgijo, your comment about “stumbling around like a drunk” struck a chord with me. I started using a cane consistently when a good friend pointed out that it kept people from assuming that I was drunk. I had no idea how I looked and how other people perceived me. It makes people uncomfortable to watch.

Think really hard about about how he would take it if you took a video of him walking/stumbling. He doesn’t realize how he looks. It will be embarrassing for him to see and may make him angry at you. His pride really will take a hit.

If you could take the video of something else an just happen to catch him in the background it might be better received.

[Seasha]

Hi beingmindful (love your user name, btw),

You've gotten some great feedback and I echo was other's have said. Look up Fashionable canes https://www.fashionablecanes.com/ to see what's available. There are some really cool canes for men.

Maybe a fold up cane might be a good starting point for him right now? He can easily stow it when not in use.

[beingmindful]

Thank you to all. I am checking out the fashionablecanes website now.

I am so grateful for the support on these pages.

[there]

Good quality hiking poles are 100% better than canes at all times, however, if he does not have the strength anymore for those he needs to start using forearm crutches, a walker or a wheelchair pr perhaps start the drug Ampyra. If it is his dorsal flexor that does not work he can get an AFO or use a Walkaid or Bioness device (google them if you dos not know what they are)

[beingmindful]

There:

My DH does use a walking pole. I think two would be better!

Have you tried the bioness or walk aide? Do they work?

Thank you,

Beingmindful

[Deerie]

A living device

I have PPMS and struggled with walking for several years. After many falls I broke down and used a cane but hated it. My neuro wanted me to move to a walker but my pride wouldn't allow it. I quit going in public if at all possible as even with a cane I walked like a drunk, still had falls and was terribly self conscious. My walking became more unstable & after a 4 fall week I realized I had to do something else. I opted for a mobility service dog instead of a walker. I'm quite tall so needed a big dog-a Great Dane fit the bill.
I've had my wonderful service dog for three months now and haven't had a fall since. When I begin losing my balance he steps in front of my leg and braces me. I stumbled and started to fall down some stairs last month and he incredibly saved me from falling. My gait is improved with him to hold onto, I'm not so self conscious because people look at him not me when we're out, I go out every day to keep him (and me) exercised and practiced and he provides incredible companionship.
If your husband is a dog lover it may be an option he would consider. Assistance Dogs International is an excellent resource and if your husband happens to be a Veteran, the VA covers the cost and vet expenses for service dogs. Hope this is helpful.

[Jim-T]

No Magic

Over the last 12 years the progression of my MS moved me from limping & stumbling to a fashionable cane to a three-legged cane to a walker to a power wheelchair.

My left forearm has a pretty ugly scar from the summer day when I fell off our concrete porch. From the bible: "Pride goeth before destruction and a haughty spirit before a fall."

How I never broke bones, teeth, or suffered a concussion, I'll never understand. I resisted every assistive device until even I admitted I endangered the quality of my life.

I finally concluded that my pride was unfair to the people who love me: my grandchildren, my children, my friends and my wife. Forcing them to continually grab my arm as I nearly fell when I staggered around finally made me see the light. I was being selfish.

My loving wife repeatedly explains to me that the devices I use to safely move around both inside and outside the house are not hateful reminders of my disabilities; but, rather, enablers that allow me to enjoy hundreds of things I might otherwise be unable to enjoy.

I wish I had some magic spell that could prevent all the MSers from refusing help as they stagger and risk falls, pridefully trying to prove to the world that they aren't disabled.

I have seen what a broken hip, broken arm or a concussion can do to a healthy person in their sixties. Believe me, their quality of life goes down very, very quickly. An injury is much, much worse than the embarrassment of using an assistive device.

I pray your husband can somehow come to see that safety is important to his quality of life not only for his sake but for the sake of all those people who care about him and his welfare.

[beingmindful]

Deerie

I am thrilled to hear about the "living device!!" Will definitely look into it.

Thank you!!!

[beingmindful]

Jim

Wise words. I will remember them, and I think if I can find a way to use them, my dear husband will listen.

Thank you!

[ohiowife]

My husband finally got a walker but is not using it.

My husband, 64, Dx in 2011, most likely has had MS since 2000 but not diagnosed, Fell down going to get the mail, for the third time. Got a fierce looking black eye and a banged up knee. Next day, we got a walker but its sitting unused. His PT guy encourages walker use but....When we walk together he holds my hand. Must be a guy thing!!

[msgijo]

Msgijo, your comment about “stumbling around like a drunk” struck a chord with me. I started using a cane consistently when a good friend pointed out that it kept people from assuming that I was drunk. I had no idea how I looked and how other people perceived me. It makes people uncomfortable to watch.

Think really hard about about how he would take it if you took a video of him walking/stumbling. He doesn’t realize how he looks. It will be embarrassing for him to see and may make him angry at you. His pride really will take a hit.

If you could take the video of something else an just happen to catch him in the background it might be better received.

kmallory1 - Just a quick followup on your suggestion: My dh and I have a relationship that we are able to talk things out (usually) so I just told him about this discussion.
He actually acknowledged that his walking is improved when using a cane, but explained what I already knew from personal experience - canes are a pain! He talked about taking one into church where everyone wanted to shake his hand and how awkward it is to find a place for the cane while shaking hands. And if he were outside trying to do ANYTHING that the cane just got in the way.

I asked if hiking poles would be better and he declined that one - on pride . I believe that they would fail on the same issues as a cane so I just have to allow that he is a work in progress and will one day realize that these devises are to help - not to hinder - him.

Thanks for the suggestion. Hopefully it will help somebody.