shoes and sneakers?

[mookyred]

ok guys, I'm on a roll today. I find that Nike 360 sneakers have been very good for me. Also, Naot sandles help with my foot drop. I wore sneakers for 6 years, now I wear sandles and shoes made by Naot. They are expensive, but it's wonderful wearing light weight sandels again. They are amazing. I have no righting reflexes so if I sort of trip on sneakers, I'm down for the count. Nike 360's are a very light sneaker. I prefer the running sneaker that provides more stability.

 

[momap53]

Are you using AFO's?

 

[mookyred]

Oh, the one PT, at the ALS clinic, who is equivalent to Nurse Rachet wants me to wear a brace. I will not. I think they would throw my balance off more. I have no "righting reflexes" and I believe a brace would throw me off more. I do have orthodic inserts to wear in sneakers. I must tell you, these NAOT sandles keep my toes up. I do not trip in them. I have looked at AFO's and may consider them in future. The problem I have with a bad fall is really due to this damn startle response when my body goes rigid, that is if I forget to take my diazapam. Thanks for the input.

 

[momap53]

Many on the forum have found the AFO's have kept them walking a lot longer. It certainly helps with my foot drop and alleviates tripping over the grout lines in the tiles. They really do help to prevent falling. Rose posted a photo of hers on one of the threads. I just got some new carbon fiber ones that are so much nicer than the full molded plastic one I got initially. Much lighter and allow more air to circulate which will be nice with our hot and humid summers. Now I just need to shop for shoes that will accommodate them. I'm going to check out the Naots that you use.

 

[mookyred]

I do fine walking when shopping and doing errands, etc. It's when I go to a place like Disney that I wheelchair it. When I fly I wheelchair it too. I've had this damn disease since about 2002, when first symptoms started. I ignored them until 2004. I went to 4 states and 5 major facilities to get a diagnose. It took until 2007. So, my doctors and PT's listen to what I have to say, because I feel I know my body better than they do. Matter of fact, when I started at the ALS clinic, they wanted me to go on Baclofen. I had bad experience. I said I would only take diazapam. It saved me from my damn startle response. I'll know when I need to take the next step. I am very determined not to let this =disease get ahead of me. Diazapam, determination, and especially PT = much improved me. If you look at Naot sandels, I wear Paris. All their shoes conform to the shape of your foot. Thanks again. This disease is a little different in all of us.

 

[Ms. Pie]

To each their own but I wouldn't be able to walk across the room without my AFOs and walker. Your balance and core muscles must be better than mine. To have it so long and still getting around is very unusual but possible! Good for you!

 

[momap53]

Ms. Pie and I are ALS, not PLS

 

[Ms. Pie]

Oh, I forgot to check that part. Well, good for you still!

 

[mookyred]

I am PLS'er but go to ALS clinic.

 

[mookyred]

I've been going to PT since 2005. I attribute my muscle strength to that alone...oh and not taking baclofen...rather diazapam....and a lot of prayers!

 

[Ms. Pie]

I hear you regarding prayers! I'm glad you are doing well!

 

[kmendsley]

* Like* your suggestion on shoes...I have been wondering if another prayer would not trip me up so much. Thank you!

 

[HelenL]

I also like New Balance sneakers/walking shoes, they're wide width, and have the velcro straps so you don't have to learn to tie laces with one hand... The white ones look like nursing shoes, I like the black ones better.

I'm going to the clinic tomorrow, think I'll be asking about different braces as well, my AFO out of plastic "lurches" me forward at times, and doesn't stabilize my knee, which is what I need more than my ankle being immobilized. Not sure if it's worth it at this point, maybe I should just get them to order me a pwc, I barely walk at all these days, my core is so much weaker.

 

[notme]

In the good old days before I couldn't afford to fill rx's, I found I did better with spasticity with both baclofen and diazapam. My doc was pretty good about letting me have both.

I can't walk 100 feet without a walker, though. I fall too often. How much are you falling? That's what kind of determines when you need aids to be safe.

 

[notgivnup]

I found the cloth mary janes hold my afo's on and let my feet swell without hurting like some sandels I have tried to use.Found them on ebay cheap, one pair was 99 cents and other $5.00, new.