Walking/Standing is there any hope for me?

[DonnaD]

I'm just hoping that there's a miracle cure that I missed on... I have MS 30 years (since I'm 23). Which is the worst symptom? Depends. Right now I'm really fed up with my walking/standing problem. I can walk unaided but not far or long. 300 yards is my limit (only when I'm starting out rested). I can't stand around chatting with people. In 2 minutes I feel wobbly and look to lean on a wall and then I really just want to sit. So I hate social situations. I hate shopping for clothes cause I'm too tired and not interested after one store. Supermarkets are easier cause you walk with a wagon but then I'm too tired to check out...

Sorry I'm just ranting. I feel like nothing helps. PT doesn't seem to do anything. I use a bicycle half an hour everyday. I feel like I'm stuck. I like to stay home on the computer cause I'm like everyone else, but not really. I hate facebook where you see everyone having fun.

Sorry - I'm usually ok - my husband is great. My kids are big and great help. But I feel like I just live through other people. This disease is really depressing. I need a break

[Echo2099]

Donna,

Yeah, this disease takes so much from us!

I am going thru a lot of the same feelings, worries, and loss of hope as you. I can't walk far without resting, or tripping myself. If I stand more than just a few minutes, and I have to sit down. I have no desire to leave my house because of the effort and fatique from just trying to walk. And frankly, I am embrassed, right or wrong.

I have tried several AFOs, the Bioness L300, and now an HFAD from Becker Medical. AFOs did not help at all. Bioness helped a bit, but I could not afford it. The HFAD I've had only a couple of days, and it seems to help a bit with the muscle fatique. I can struggle along for longer than I could without it. But, can I walk like I did a year ago? Absolutely not!!

Despite PT and OT 3 days a week, and swimming the other 4 days a week, along with Ampyra and botox for spasticity, it is frustrating and depressing to not be able to walk without wobbling, tripping, and loosing my balance. I have a hard time accepting this is just the way it is and will continue to be and there is nothing more than I can do and no hope for improvement.

If I give up hope and trying, then I am done. I will be in a wheelchair or flat out in bed, and loose what little independence I have. I will be in a nursing home or my husband will be left to care for me. I can not accept either of those options!

It is hard to balance hope and hopelessness. Within an hour I can vary between thank God, I can still can still walk, even if it ain't pretty, and I look like I am drunk; to "I give up, I can't do this anymore!"

So you can see, I don't have any great advise for you. I know it doesn't help, but all I can say is, you are not alone in your feelings. I am right there with you!

I am trying to hold onto hope for ways to repair damage, new devices for assistance, and finally a cure this demoralizing disease. I also remember, it could be worse! Many others in this world have far greater disabilities than I do. But then my brain turns on me and says "give it just a little time, it WILL get worse!" I wish my brain would just shut the heck up!

Anyay, I wish you hope, courage and support to know you are not the only one 'fed up wth this way of existence'! Cuz it sure ain't living!

Echo

[SNOOPY]

Sorry, there is no miracle

Some thoughts: Use a mobility aid (cane, Canadian crutches, walker, trekking poles). If possible plan ahead for social gatherings or outings. Do your own research or ask if there will be places to sit. Take into consideration the limitations you have and how best to deal with them before putting yourself in a situation that causes problems for you.

If walking is no longer possible then use a wheelchair/scooter.

It sounds like you are trying to continue living your life under your own power and it's not working. A mobility aid can offer more freedom.

There is a medication, AMPYRA, that is supposed to help with walking. Talk to your Neurologist to see if this would be an option for you.

Take care!

[DonnaD]

Thanks for the responses
Thanks Snoopy -

I take Ampyra and I do think it helps (that's seeing the cup half full - really the cup is totally empty if I don't take it). I also take provigil which helps with energy (but also like looking for the half full) I do have a golf cart (I live in a small town where me and the old people drive those), cause I had to stop driving.

A scooter or finding a seat doesn't really help my socializing. I don't want people coming up to me to talk cause I'm handicapped. I don't like drawing attention to myself so often I sit down and I'm sitting alone.

Echo - You sound like your situation is very similar to mine

"I can't walk far without resting, or tripping myself. If I stand more than just a few minutes, and I have to sit down. I have no desire to leave my house because of the effort and fatique from just trying to walk. And frankly, I am embrassed, right or wrong."

Exactly. I only like going places with my husband cause he holds my hand walking and he finds me a chair, brings me a plate of food or sits next to me if I'm the only one sitting while everyone else is mingling. He drives, parks close, loads the groceries in the car...

I have an AFO which really helps my drop foot so I'm not dragging that foot - After a few minutes I'm dragging all of me . I tried the Bioness with the PT but it really didn't help. I got tired as quickly and it doesn't help my standing and chatting for more than a few minutes.

I'm 53 years old, was diagnosed 30 years ago right before we got married. We have 5 kids (4 are in their 20's, one's a teen) - so I raised 5 kids and somehow they turned out OK. They're all partially at home and partially in their own apartments but they really take care of me.They'll cook, pick up things from the supermarket... But I feel like I missed 20 years of life. I stopped working 22 years ago when I had a bad flare and started collecting disability. It really helped over the years that I didn't have to work but I really lost my identity then. I'm just not part of life in the world. Do you know what I mean? I don't have office friends. I don't do the things other people do. I even think my opinions are based on what's in my own head. Like I'm dull.

Sorry I went off the topic. I never talk like this. I hate that my best friends are strangers on forums. All my old friends are out busy or out meeting new people. wow - I sound depressed. I'm really not. Just feeling a little down, like the world ran past me and I can't keep up.

[Canary54]

DonnaD: I know what you are talking about It is so hard to realize (and then have to deal with) what we have lost. I have had MS for probably 38 years, but have been diagnosed for only 8 years. Raised 4 children and no symptoms for 30 years. I can shop holding a cart at the grocery store, but it's a scooter for me at Sam's Club or Costo. Standing is the absolute worst! My husband goes grocery shopping with me just to stand in the checkout line. And, if I can't buy it online at Kohl's......I probably don't need it!

Social events are killers because all I can do is sit and wait for people to come to me.........and I HATE it!! My husband is very social and he's off mingling and chatting and there I sit until someone comes up to me.

I also take Ampyra and shudder to think "how bad" I would be if I didn't. I still work full time, but after a bad week like last week (busy, busy, busy and stress-filled), I spent the weekend looking a walkers and mobility scooters on-line. I really dread the day when I have to admit it's necessary to using a mobility aid of some sort, but everyone says to save your energy for the important stuff and use a mobility aid as a tool to do what you want to do. I working on getting to that mind set.

I don't know that there is a solution to our problems (other than a fair godmother!), but know that you have lots of company here! Stay strong!

[SNOOPY]

Hi DonnaD,

A scooter or finding a seat doesn't really help my socializing. I don't want people coming up to me to talk cause I'm handicapped.

This is your perception and feelings about being handicapped or having limitations, but it's not reality.

Usually those who are uncomfortable around people with disabilities don't come around you, they are too uncomfortable to do so. Those that come around do so because they want to engage you in a conversation, get to know you, ect. You are the one who is uncomfortable

I don't like drawing attention to myself so often I sit down and I'm sitting alone.

I'm sorry to hear that, it's really quite sad that you are isolating yourself when you really don't need to.

DonnaD, I'm really not much different than you. I was diagnosed in 1985 at the age of 24 (I was married at 20) I have 2 children ages 23 & 25. I'm 54 and like you I have been diagnosed 30 years.

This disease affected my mobility from the beginning. It has been through exercise and PT when needed that I have remained mobile. For PT and/or exercise to work you need to daily. I use Trekking Poles as a mobility aid, they help with my endurance and stability.

Please try to look at mobility aids as a way to continue enjoying your life.

[DonnaD]

DonnaD: I know what you are talking about It is so hard to realize (and then have to deal with) what we have lost. I have had MS for probably 38 years, but have been diagnosed for only 8 years. Raised 4 children and no symptoms for 30 years. I can shop holding a cart at the grocery store, but it's a scooter for me at Sam's Club or Costo. Standing is the absolute worst! My husband goes grocery shopping with me just to stand in the checkout line. And, if I can't buy it online at Kohl's......I probably don't need it!

Social events are killers because all I can do is sit and wait for people to come to me.........and I HATE it!! My husband is very social and he's off mingling and chatting and there I sit until someone comes up to me.

I also take Ampyra and shudder to think "how bad" I would be if I didn't. I still work full time, but after a bad week like last week (busy, busy, busy and stress-filled), I spent the weekend looking a walkers and mobility scooters on-line. I really dread the day when I have to admit it's necessary to using a mobility aid of some sort, but everyone says to save your energy for the important stuff and use a mobility aid as a tool to do what you want to do. I working on getting to that mind set.

I don't know that there is a solution to our problems (other than a fair godmother!), but know that you have lots of company here! Stay strong!

I'd rather sit on the side than be in the middle of the room on a scooter. My husband is also very social so I let him start the mingle chat and then I get up and join the conversation till I want to sit, and then I just move away.

I tried one of those scooters in a supermarket that had them and it was awful. If I stopped to look at something I was jamming up traffic in that aisle. I used one once at IKEA - that worked pretty well cause I parked it and walked around that area and then got on it to move to the next area. Something I started to do in supermarkets (I wrote about this in a different thread too), I keep a thin beach chair in my car trunk. I hang it from the hook on the front of the shopping wagon (the hook where people put a big bag of diapers or toilet paper). Then when I MUST sit, I open up my beach chair and sit for a few minutes. It's a little odd looking but it's more funny than pathetic

[DonnaD]

Hi DonnaD,



This is your perception and feelings about being handicapped or having limitations, but it's not reality.

Usually those who are uncomfortable around people with disabilities don't come around you, they are too uncomfortable to do so. Those that come around do so because they want to engage you in a conversation, get to know you, ect. You are the one who is uncomfortable



I'm sorry to hear that, it's really quite sad that you are isolating yourself when you really don't need to.

DonnaD, I'm really not much different than you. I was diagnosed in 1985 at the age of 24 (I was married at 20) I have 2 children ages 23 & 25. I'm 54 and like you I have been diagnosed 30 years.

This disease affected my mobility from the beginning. It has been through exercise and PT when needed that I have remained mobile. For PT and/or exercise to work you need to daily. I use Trekking Poles as a mobility aid, they help with my endurance and stability.

Please try to look at mobility aids as a way to continue enjoying your life.

It's not only cause I'm stubborn. It's also that I'm too tired for the activity when I'm there. If I'm in a clothing store I'll try on one outfit but if I have to get dressed and go get the next size, I'll get dressed but won't get the next size to try. The thought of getting dressed again and again is exhausting.

I think my brain has gotten foggier (yeah, I know - cog-fog). I enjoy getting together with old friends but if I'm in a room with many people talking together I kind of zone out. Small talk with new people is too much effort.

I did get a golf cart when I had to stop driving (I made 2 mistakes - not major, but realized that I wasn't concentrating), and then one day I wasn't positive that my foot was on the gas so I stopped. I wrote such a wonderful letter to an organization that paid for part of my golf cart about how I can now go out to buy milk, can go to PTA meetings in the school, can participate in social events, can go to Dr appointments, can go to the hairdresser... But it wasn't true. Everything is tiring.

When I turned 50 I though that was a hard birthday. 50 is too late to go back to the career that I gave up. My mind isn't young and sharp enough to learn something new well. I can't handle anything other than sitting. No one just sits. But at 50 I said, I wish I was 60. When you're 60 people say "You look so good for 60!". They're amazed at what you do at 60! My mother is 84 and still really gets around. She cooks, runs to the store, organizes her house... Simple things that are all an effort for me.

I feel like I aged. I would do great if I was really 80 years old now.

[Avengr13]

Old home week

I have been on several different forums but had not found anyone so much like my situation. I was diagnosed with m.s. 30 years ago. The same month that I married my 1st husband. It was a very rough beginning. I have been fortunate that I was relatively healthy until this last year. Many exacerbations, prednisone, Avonex, Rebif, seizures, etc.
this last year it moved to my spine an now I have so many of the same spasticity issues, foot drop and balance issues. Acupuncture helped some and I have a great p.t. That helps a great deal.
But it isn't fun. I use a scooter at home and shopping. A walker or my roller. I kissed my canes goodbye a while ago. I am so lucky that I have a great husband.
i have plenty of bad days but I try to stay positive. Nice weather helps fix my mood too.
anyway, nice to meet you all.

[Avengr13]

Cinderella

I started a blog and it does help to write about my thoughts and experiences. One of my entries is Cinderella. Doesn't it feel as though we are all like her in that we bike, we exercise or swim to keep limber. And then like Cinderella, we wake up and all we have worked for the day before is gone! We are stiff, we can't walk, our carriage is a pumpkin and our footmen are mice. And our glass slipper is gone! And so we start all over because that is what we must do to live. When will the prince arrive and give us our cure?

[LostInSeattle]

Walking?

Hi after reading some of others with walking problems I'd like to know about Ampyra?
Does it really help with balance?
Hoping everyone of you find the answers your searching for.

[jreagan70]

Hi after reading some of others with walking problems I'd like to know about Ampyra? Does it really help with balance?

No, Ampyra isn't intended to, or particularly known to, help with balance. Ampyra helps with walking by helping with strength and speed.

If balance is what's stopping you from walking -- and not strength -- then Ampyra might or might not help. You can always ask you doctor for a trial of Ampyra to see if it helps with your balance.

Ampyra is FDA approved only to increase walking speed. If it doesn't, your medical insurance might not pay for it even if it helps you in other ways. But you won't know unless you ask your doctor for a trial.

[LostInSeattle]

Hi

Thank you Donna, I thinki was just hoping.
Hoe your well.
Sincerely,
Susan

[Thinkimjob]

Which is the worst symptom? "Depends".
Literally. I'm 46, and I just bought my first packet of adult diapers. Won't be the last.

Mainly because I cannot wheelie-walk fast enough to get where I need to be.

It is extremely hard to have a positive attitude. Going out is exhausting. Bought the incontinence underwear online because I haven't been to an actual shop for six weeks.

The noise, the crowds, the effort involved in talking.

Plus side I forced myself to have a proper shower today, first for three days, so yay for me. Still recovering three hours later, but I'm squeaky clean.

[LostInSeattle]

It helped me

Hi everyone, it has been a stressful Summer so far. We had to reside the house so a lot noise & workers all over. Until 7:00 PM. Then we/I had to find new light fixtures for our home. Thank the good Lord for the web!
The heat has pretty much kept me in most of the summer.

But my good news is I Googled on how to regain lost balence. Found a link that seems to help somewhat. If I don't walk with my legs spread out so far my core will regain strength & I might make it from the chair to the couch. I have taken some very painful falls doing this. But still using the darn walker most if not all the time. I use the power chair in the evenings as my Energy is gone. Wish I could go for a walk to see my next door neighbor but they don't have airconditing so that's out. Stress at home is not great but I have found if I share little it helps a ton. Hope your all making it through summer without overheating. Sincerely, LostInSeattle 🙄