how long will I be able to walk?

[Madison1943]

Hi, I'm just wondering--is anybody with limb-onset still walking (with canes, rollators, etc.) after 2 years?I just want to know what to expect. My daughter is coming to live with me in May and I want to get an idea what I'll be able to do. I don't even have a powerchair now. I'm still getting around with 2 canes or a rollator, or just lurching on my own. You couldn't call it walking. My legs and back hurt almost all the time. I think the pain limits me as much as the weakness and loss of balance.

Anybody got any ideas?

Thanks,
Carol

 

[joelc]

There is no way to predict what the time frame will be. Sorry.

 

[bythesea]

You sound at he same point I am now. I've been sort of walking for one year now.

I went out with the wife for lunch today and we both could see it was time for a wheelchair.

I just got he doc's diagnosed and his signature today for an MDA application. They a have an office right here in my town

I'm looking foward to a loaner chair for trips out and a walker for the house

After that, I don't know what to do. A power wheelchair is not a good alternative to my house or new car (not van)

Still considering a nursing home I long ago evaluated as being excellent for the later stages

I envy all of you who can muster the physcial and emotional resources to live at home come hell or highwater

 

[Debruh]

To let you know too, my husband has been living with ALS for 2 years now. He cannot stand and has no balance right now. But, with the help of rollators, he gets around (barely). It's been 6 months since he started going from cane to rollator. I think the next six months will mean a power chair. However, our house, too, is not suitable for that (3 floors). Not sure what we're going to do. We have to make some decisions on where to go from here. Another note too, he has terrible pains all the time. Shoulder, back, neck, etc. It seems that just th slightest wrong movement sends a strong pain down his abdomen. He cannot find any comfortable sleeping positions either. Who said that ALS patients had no pain?

 

[halfin]

Carol one thing I can say is that it sometimes takes a long time to get a power chair. So if you think you might be needing one in the future it is a good idea to get the process in motion. Beth had a terrible time, I think it had been 5 or 6 months and at least as of a month ago she still didn't have it.

That's good that you are still able to get around on your own, 2 years in. It does sound like you are coming to the limits though. It is so hard to predict, to know what to expect.

I am lucky in living in a pretty flat 1 story house. We have a small step in the middle but a piece of plywood with some magazines under it took care of that. Got a loaner chair from MDA and I use it quite a bit even though I can still walk pretty well. I could walk 2 or 3 blocks if I took my time. But I use the chair a lot, I enjoy it and it rests my legs. I figure if I want some exercise, I'd rather go out with my walking poles and get some fresh air, rather than tire myself out limping back and forth to the kitchen and bathroom all day.

Going out in public in the wheelchair did make me a little self conscious the first few times. It helped, in my own mind, knowing I didn't absolutely need it. I could stand up and walk if I had to. I actually felt a bit like an impostor, but then I thought hey, I have ALS, I have as much right to use this as anyone. People are mostly very nice and unusually friendly. I always let them help me, I figure it helps them feel good about themselves. I'm really doing the world a favor, spreading good cheer as I go.

The point is, I try not to think of a wheelchair as a prison and loss of freedom. Even at my stage the wheelchair mostly gives me more freedom to go places I wouldn't try otherwise. I'm going to be doing quite a bit of travel in the next few months, 3 flights planned, one with 3 legs each way, and I'm bringing the chair for sure. I don't know how my legs will be by then but even if they go on me, I'll be fine because everything is planned out and I have the resources I need.

 

[irismarie]

Hey, Hal, are you coming to France?

 

[indigosd]

Carol, I am soul happy to hear that your daughter is arriving in MAY! As far as the walking, Web is still able to walk but does tire easily. His speech is almost gone :[ hugs to you.

 

[abbas child]

Carol, I made do without a wheelchair for over two years, but when the time came, there was no way I could do without it. Your description of your state now is how I was right before I needed it, so please do whatever is needed to get it. I had less pain when I began to use the power chair, a lot more energy, rarely fell (only while walking), but could still walk a bit, stand at the sink or the washing machine. As Kay Marie just said above, it's wonderful you have your daughter coming!

 

[Madison1943]

Hey, thanks. I made the call today to my neuro who faxed the script to the rehab place. I'll ask the ALS loaner closet if they have one I can borrow in the meantime. It's getting harder and harder with the rollator and canes. I never go out in front with the dog anymore. Once a day we go out the back onto the lift and I stand in the lift while he does his doggie business. We use neighbors and aides for longer walks and more serious business. He's adjusted, but I really miss just taking off on a walk. I have a big scooter that I use outdoors when there's no snow, but it is useless indoors. I also have 3 levels so I would be using a $35,000 powerchair for just 2 rooms. Sounds like such a waste. And Debruh, like your husband, I have horrible pain in my back and legs. Bed is like a torture chamber by morning. I can't sleep on my back and sleeping on my side is bad for my legs. The whole thing is just a big pain in the butt. I hope everything is rosy when Amy comes to live here in May. My son is visiting (without the family) in 2 weeks. Well, thanks for the info. I'll try to get the chair soon.
Ciao,
Carol

 

[BarryG]

Carol, I am so glad that your daughter is coming to live with you. I know that it will make your life easier and spring is coming and once the snow is gone you will be able to walk your dog again. I am in the process of getting a loaner chair so hopefully I will be able to get out and about again soon too.

 

[Madison1943]

Thanks Barry, yeah it's great that my daughter decided she had to take care of me. The only fly in the ointment is that she is a well-educated lawyer, not married and used to a busy active life. I'm worried that she will not be able to adjust to the incredibly boring life here. But if she's here, we can get a van and lift and be on the go all the time. I have a scooter that I could use for such outings. So maybe it'll work out after all. Thanks for the encouragement!
Carol

 

[indigosd]

Carol, do you suppose we could convince her to be our legal consult?!

 

[Madison1943]

Hi, Indigosd, I don't know what Amy will want to do when she's here, but her background is with SS disibility law and her current job is as a public defender in Oregon. Probably she can get a job as a paralegal here since she doesn't want to take the bar exam in another state. We'll see, but I don't think she'll want to be my babysitter 24/7! She skipped 2nd grade and went away to college when she was 16, so we barely recognize each other. But she said she was becoming increasingly depressed about my condition and got to where she hated her job and wanted to tell all the criminals to go to hell. She's already given notice.
I'll let you all know how it goes. She's coming to visit later this month.
Thanks,
Carol

 

[PamelaSue]

Carol,
It is all so unpredictable ... at least to me. I have limb onset, diagnosed nearly 18 mos ago, and am still walking. I try to count my blessings every day. I use a cane occasionally, mostly because my balance is horrendous, but am able to walk around the house and in the office unassisted. I am still working full time and plan to do so as long as I can.

So hang in there and keep walking as long as you can ... but keep safety in mind. My friends offer me their arm if we are walking outside or in a public space where I might get bumped. As the weather gets warmer I am thinking of getting some walking sticks so I can do some hiking, which I miss so much! I borrowed some last fall, and they worked great!

I have a "use it or lose it" attitude, which some may disagree with, but I'm stidking with it.

I hope you keep on walking for a long time. Keep me posted, sister!

Best regards,
Pam

 

[Madison1943]

Hi Pamela Sue, it's fantastic that you can still work full-time. I got this stinking disease after I was retired so I am extremely glad I don't have to work still. I just couldn't anyway. But I have a pension and SS so get along ok. I really don't call it walking--my balance is horrible too. I've fallen down dozens of times and am starting the process to get a powerchair next week. The ALS org is loaning me one too. But I really don't know if I can use it in my tiny downstairs. We'll see. I don't think I'm doing any favors to my feet and legs by walking. I try not to walk anymore than I have to. I don't want to wear out the mushy muscles I have left. Besides the legs (where it started) I'm most concerned about my slurring words. That is getting worse, almost to the point where I'm going to stop talking on the phone. Email is best. I was diagnosed not quite a year ago, but my 1st symptoms were in June 2008. I'm way over it. Thanks for your reply.
Carol