How does everyone function daily and quality of life while having AMN

[Roker1176]

What do you guys do about going out to eat or have a drink? I’ve been a little antisocial because I guess a little embarrassing with my gait but eventually I just do go out and try. I don’t take any medication for AMN I guess that’s another odd question. Am I the only one?

[SongStream]

Because I do take medication for neuropathic pain and spasms (which I begin around 5 p.m.), it makes driving forbidden and limits me socially. Because I have been diagnosed with AMN and now use a cane (power chair on longer excursions,) I'm just grateful that I can still walk! When I was newly diagnosed, I was quite sensitive and self conscious. It takes time and acceptance along with gratefulness when you realize that others have it much worse. I no longer drink aside from a nice glass of wine with a meal. However, I may have had only 2 drinks in the last 2 years! I don't think alcohol is good for our condition or any other neurodegenerative disease because of the involved oxidative stress. But moderation is the key. Your feelings are valid and normal. Just keep on trying and keeping on. Live life, love life on your own terms.

[Snoopy41213]

Hi Roker, You sound exactly like my 43 yr. old son. Since he has lost his independence as he can not drive, he goes nowhere and does nothing but stay in his condo with this cat . He can still get around by holding onto walls so he thinks he can still drive, but I am sure in his heart he knows he can’t . Still very much in denial of this disease. His quality of life could be better but then on the other hand , it could be worse !

[julie_]

I do pick and choose which events I attend, whether it's eating, drinking, watching movies, going to concerts, etc. It's just not good sitting down for more than half an hour at a time! This is so even though I take medication for spasticity and pain. If I don't take medication, the spasticity and the related pain is much worse. Anyone who socializes with me know that I am trying to lead a normal life, albeit at a different speed!

I also get tired but the time of day varies. If I know I will be out for the evening, say at the theatre, then I will try to schedule it for a day I'm not working. Mind you, my work outs are in the evening after work, so planning and moderation is key!

[SongStream in reply to julie_]

I'm usually the last to leave the movie theatre (aside from watching the full credits) because I'm stretching my hamstrings while holding on an adjacent seat. Otherwise, I wouldn't be able to walk out. I think I'll write a song called "Concrete Legs". Hmmm, I feel a song coming on.....

[dryder in reply to SongStream]

I call it tin man syndrome..

[SongStream in reply to dryder]

Exactly! Last week when I went to Stanford for my MRI, in the disabled lot, a man next to me was getting his wheelchair from the trunk of his car. Meanwhile, I'm stretching my legs since I had arrived. I told him I feel like the tin man crying out for oil! He said he, too, feels like that. I had a brotherhood moment. So nice to not feel alone and coping with this condition!

[Roker1176 in reply to SongStream]

That’s why I made this post because I know everyone has different problems but it’s nice to know it feels we’re not alone and everybody symptoms are different but are all on the same boat and love how some people are flying around saying screw it and nice ways of doing activities and using some tricks to work around . Glad I posted this thanks to everyone that answered there experience

[julie_ in reply to Roker1176]

Thank you for posting! I think we all learned something!

[jayxie]

Hello, what kind of medicine are you taking to control the pain and cramps?

[Roker1176 in reply to jayxie]

No medications for spacitity and I don’t have pain just stiffness

[COwithAMN Administrator AMN EASIER Volunteer]

Hi there

Your question is perfectly normal as most of us here will attest. I have had AMN for over 35 years - now 76. When I first started having notable symptoms I was working in a job where I had to visit clients, go to meetings, and get on planes regularly.

I felt a bit self-conscious the first time I used a stick. But, after a while, I came to realise that people really stopped noticing. It was just the way I was. I ignored it, and eventually, so did others.

Then, I noticed a very fine walking stick with a silver handle in a shop and splashed out on that. It proved to be a great move; I turned my disability to an advantage! People commented on how fine it looked.

It's true that when we have a bit of a wobble or odd gait, some people will think we are drunk or have some other disorder. That's their problem, not yours. Just ignore them.

I also think also that using a walking aid helps people actually understand the gait problem that they may have otherwise misunderstood.

So, my advice is to get out there and enjoy life. I now use a mobility scooter and went through the same issues when I started using that a few years ago.

As regards the medication, you are not that unusual. I take no meds other than mirabegron for bladder, and even that I have considered reducing. AMN has so many variations in symptoms so you may just be one of the lucky ones who just don't need much. I don't believe in taking anything unless you really need it for, say, neuropathic pain, or steroids for adrenal dysfunction. In the past, I have tried most of the prescribed anti-spasticity drugs but they had limited benefit for me so I stopped using them.

Good luck to you. Thanks, for getting in touch and sharing your concerns.

Chris

[DennyB]

Hi Roker. I'm 62 and have had the affects of AMN for approx 25 years. Prior to that I was running marathons. I found I was also very self conscious about having to use a cane. My first one was like a tramping pole so it looked less like a cane. I have now progressed to needing 2 canes to get around. I brought a travel scooter and really love the freedom that it gives me. I get brassed off at times with this condition, but I tell people that you don't have to look very far to see someone worse off. For the AMN I take baclofen & clonazapan. I try to live as normal life as I possibly can. I am still driving so I still have a great deal of independence.

[monkeybus]

Thing is, nobody cares. You can be as self-conscious as you like, but nobody cares. You could roll into a restaurant in full-on Stephen Hawking mode and nobody would care.

Get a decent set of crutches and hit the town. Won't do you any good sat indoors. That said, I hardly go out lately. Flying to Japan tomorrow. My son wants to go. Modern kids. They don't know they are born. Tokyo Game Show. That'll be a nightmare.

Go easy on the booze. I always budget for a taxi, or else pick a place near a train station.

No one cares, but I care, son. If walking with an embarrassing gait is your main worry then you a lucky man. My friends' social activities stretch as far as getting drunk as quick and as often as possible. And I'm talking about middle-aged men here. If I didn't have AMN, I expect I'd be joining in.

[KennyInPA in reply to monkeybus]

Exactly, I don't care! I had a coworker say to me he wouldn't be caught in my AFO's while wearing shorts. So it's either that or I fall embarrassingly in public, I'll take #1 thanks! I got a handicapped placard and only use it when I'm having a bad day or in a busy lot. Take one look at me and they know I'm not faking it, but in the end, I don't care what people think. This is a game brought upon me for me to fight with my body, nobody else.

Have fun in Japan!

[monkeybus in reply to KennyInPA]

Cheers dude.

Arrived in Japan, jumped all the queues, went to the Game show, jumped all the queues. Sneaked my son in, lied about his age. Great time. You have to take this disease on your terms. Anything else is unacceptable for me.

Hard work, but what is the alternative?

[julie_ in reply to monkeybus]

So, thinking about my future long distance flights, what do you mean by "jumping all the queues"? How? Do you mean by requesting the wheelchair at the airports? Carrying a walking stick?

[monkeybus in reply to julie_]

What I do is -

Buy your ticket, I use Expedia.

When you have your ticket, ring the airline, tell them you have special needs. You want a wheelchair from check in to the plane door. I always request an aisle seat and vegetarian food as well (tastes better IMO). Request a good seat. Near the boarding door and plenty of legroom if you need. Always works if you book early.

When you get to check in, go to the business class queue. They'll clock you are stumbling/whatever, and bump you to the front. Check in and wait for the wheelchair. Also, they won't be too bothered about the weight of your luggage.

Never, ever offer to walk more than a few metres. My Mum does that, and ends up doing huge distances if the wheelchair is late. Check HK airport or Heathrow. They are like cities.

You'll now jump all the security queues, airport security will ask if you can walk through the scanner, say no.

They'll pat you down instead (in Japan, I was patted down by an attractive young lady. Perhaps I should launch a #metoo thing for that).

Get to the airport gate. You'll now wait.

Boarding, they'll ask if you can walk to the plane. Say no.

First class will board first, you'll board with business class. Get wheeled to the plane door.

Arrive at the plane. Now you are the responsibility of the airline. Can you walk? I do, but they do have special plane wheelchairs.

Board, every airline has always assigned me a personal steward/stewardess (is that what they are called nowadays?). They introduce themselves, they'll say whatever you want, just call me, blah blah blah. I am talking about Asian airlines and decent European ones here.

Land. Wait. Let everyone off first. When they all depart, the steward(ess) will come, get you off the plane, wheelchair at the plane door, jump in, get wheeled through the airport, jump all security queues (if you are transiting), if you are at your destination, you'll get wheeled through either the staff or diplomatic line, immigration will give you the once over, customs never search me (they used to when I was on my feet and had long hair, probably looking for that damn dope. Me, smoke weed? What a quaint notion).

Now you are through all the airport nonsense.

I'll example Japan. The wheelchair pusher will ask where you want to go. I always subway.

They'll push you to the subway.

Now you are the responsibility of the train people. In another wheelchair, down to the train platform. Where are you going? A man (always a man) will be at your destination (at the correct door, with a wheelchair. You can set your watch to Japanese trains), out of the train, onto the street.

I am exceedingly polite all the way. Never, ever cause trouble with airport people. I have seen it happen, I have done all kinds of waiter/Starbucks, etc, service jobs. Crap money, dealing with the public, on your feet all day. I know the game. It is nice when you get a nice customer. Quick, friendly chat, thank you very much indeed, etc.

Now you are on your own.

Despite the terrifying rightwing direction the Western world is going, we do live in rich, advanced, capable, caring societies. If you ask, you'll get help.

I go to Asia a lot. The service is fantastic. Japan will treat you like a god. HK, China, Singapore, South Korea, they are all vieing to be #1 in Asia.

Even London. London Underground and the buses used to be awful. It's great now (compared to the past). Used to be like the Gestapo when you get to the ticket gate. Check your tickets thoroughly, 50 Pound fine if you didn't pay enough. Now, they'll just open the gate for you. I've been let on buses for free if I can't get the ticket out from my bag quick enough. Supposed to pay for my son, they just don't care now.

Don't forget to ring the hotel and request a room that's not too much of a walk from the elevator/whatever.

That's it julie_ . Let me know where you are going, With my demanding life, I may be able to meet you.

Bon voyage.

[COwithAMN Administrator AMN EASIER Volunteer in reply to monkeybus]

Very useful, thanks! So good I have clipped it for future reference. But you skipped over what for me (and my wife) would be a major concern - access to toilets. On trains in the UK you can demand a seat next to a toilet (and hope it's working). But on a plane?

[monkeybus in reply to COwithAMN]

They always offer me a seat near the toilet. I don't like that, always people hanging about near me.

Planes, airports, shops, etc. They just want you in and out, not fall over and claim on their insurance. They'll do just about anything to accommodate.

Easyjet gets a bad rap from disabled people, but they were alright with me. British Airways budget airline is better though. Disabled people can check bags into the hold for free.

Avoid Swiss Air. I'll be happy to libel any airline you like.

Lufthansa are great, as is just about any Asian airline.

[julie_ in reply to monkeybus]

Very helpful, indeed! Yes, it sounds like you're conserving energy before and after your trip - more energy for the trip itself!

I know Heathrow well, I don't remember Hong Kong and of course I'm in NYC, so I know about JFK.

[monkeybus in reply to julie_]

Very rare I ever go in a wheelchair. Like a lot of people with spasticity, I avoid them like the plague. We all know the reasons why. Pride, it's one of the deadly sins. I've seen the Brad Pitt film.

But airports are awful places. Like enormous bus stations. Too many people, uncaring staff, get treated like a criminal before you head airside. Not my idea of fun. My son loves it all. Haven't even talked about economy class either. Luckily I'm short. Seating isn't an issue, but you get packed in like cattle.

Hell is other people - Jean Paul Sartre.

And you've got to repeat it when you land, and return again.

Anything that takes the edge off. Do it once, you'll never stand in line again, and why should you? And they pay dedicated wheelchair pusher people to do this anyway, so it isn't like you are inconveniencing anyone.

Sometimes you go in the electric car. Have a chat with the other disableds. Compare diseases, etc. Your family gets red carpeted as well as you, so it's all gravy.

Flying again soon. Though, I seriously considered the Trans Siberian Express. Vladivostok to Moscow, then there must be a train to London. Same cost as a flight as a flight as well.

[julie_ in reply to monkeybus]

No, you're right. Pride. I have a walking stick but have not taken it out. There is another thought about that though. It requires you to walk a certain way and eventually you cannot walk without it. Not there yet but it's not far.

I do not have the means to fly business. I'm short as well and I was surprised by the leg room in economy on my 2 flights last year - my knees did not touch the seat in front of me and even if the passenger leaned his seat back, I could still breathe!

Man, you do get around! Next year, I plan on Tokyo and London and perhaps Vancouver where there is family. I will get in touch to see where you are.

[SongStream in reply to monkeybus]

Great advice and should be included in a magazine geared for disabled.

[GeoffMahy Volunteer]

I agree with the other comments. I am 74, have had AMN for more than 20 years. My mobility is very slowly getting worse but I accept it and keep smiling. I can't walk with sticks (canes) any more so I push a four wheeled walker (rollator) and have just bought a small electric scooter for longer distances. Fortunately AMN only affects my legs so I can still drive and get about generally. My friends accept that is how I am. Nobody thinks any less of you but they are keen to help when possible, holding doors open etc.

My wife and I are careful to only go to accessible hotels and restaurants where there are no steps to climb. Like Chris I take mirabegron for the bladder but I am not sure how much it helps. I take amitriptyline at night for restless legs and I think that does help.

Keep smiling and good luck, Geoff

[quilling]

I am a 59year old female affected since I was 20 I am able to drive with hand controls that I have had for years. Now it is pointless because I can drive but I can't walk on the other end.I have had AFOs for years and used a forearm crutch-which wrecked my hand. Last year I fell and broke my hip so now I have to use rollator around the house and wheelchair pushed by another or electric scooter.

Before I accepted my disease I wall walked. After I got my AFOs and crutch one coworker actually told me she thought I was drunk! Mind you I worked in an elementary school! So do not be shy about using what you need, not for others but for your own safety. I fell so much my 4 year old asked my husband why I fell so much and as she got older she took my hand because she knew I needed it.

Now I don't go out because I am in pain and I am just tired of pretending. My bladder doesn't work well so I have to use the bathroom which is an event.I don't work so I feel I can't join the conversations. People I used to work with that have retired talk about shopping, Travel etc. I am home alone all day struggling to do what I can around the house. I know I am lucky in many ways but I don't want to hear about fun lives. Its hard enough for me listening to my husband's day He plays hockey 2 nights a week and fishes so I am happy for him but more time alone and jealous.

I have now started with head and voice tremors so really don't get together with people at all.

Do what you need to be safe. Don't care what people think. Enjoy as best you can. Have a drink for me!

[tieaknot in reply to quilling]

I still try to get out although I do spend a lot of time alone. I plan to take up piano or another instrument.

Botox! Botox Botox Botox! I am in love with the stuff. I have the youngest looking bladder!! Lol seriously I was terrified to try it but I have had it twice now and am in need of more. It’s supposed to last several months but 3-4 months is my max before I am having accidents again. I see a urogyn who does it in her office. It’s uncomfortable to get the injections into the bladder but very worth it in my opinion. I’ve been able to go to my kids soccer games, out to a bar, and am actually considering traveling again (I gave up ok that). It’s not perfect, I still sometimes have accidents and always wear a pad just in case but much better than before.

As for walking...some days are better than others for me. I sit when I need to sit. Today is recovery day from a busy weekend. My legs and back have quit.

I’m learning to accept it and rest when I need to so that I might squeeze a bit more activity out by next weekend.

It’s an adjustment but we have just one life. I easily fall into a depression (for several reasons) but I have to keep reminding myself that this is my one shot and these are the cards I’ve got...

Hang in there and remember you’re not alone.

[Klorda]

I am 58 years old, female, and was diagnosed 3 years ago. I am very active and very social. My gait is somewhat declining but I can still walk (and run sometimes!) although I have to watch the ground constantly. I am very self-conscious about my gait but what can you do? A lot of people who know me wonder why I am limping. I just tell them I have a neurological disorder that affects my gait----which is true. I just hope I can keep moving. I work out every day just to keep fit and my brain and neurons still connecting. I think that is key.

[mariagno]

I went through the same degenerative path from a cane to arm crutches to a walker. I now use a wheelchair.

I bought a lightweight folding chair from Tilite. The wheels pop off and it is very easy to get in and out of the car. The frame weighs 13 pounds and with the wheels, it is 25 pounds.

I also added a Menox hand control to the car to make driving easier.

I was homebound for a few years and got sick of it.

I am out almost every day now going to the mall, the gym, lunch with friends, nights out with the wife and family, parks, and many other places.

Put vanity aside and get mobile. You will be happier and healthier.