Unable to walk after 1/2 block
AnonymousJuly 6, 2008 at 10:11 pm
I have what might be a stupid question.
Last night I went to a fireworks show and we had to walk about four blocks.
After a 1/2 block or less, my feet got really “flappy” and I noticed I was really lifting my legs way up in order to lift my feet. The drop foot thing. I have drop foot on the left but not real bad…and now I see it’s gone to the right.
The good side is the right but last night it was way worse than the left.
I didnt realize we’d be walking so far…I’d left my cane at home. NOT smart.
I was doing fine …my normal slow, old ladyish walk and then the “flapping” got worse.
I know I need to wear my AFO for distance now…I really learned a valuable lesson. I had my 25 yr old niece who is all of 100 lbs and she was carrying her 18 mo old on one arm and letting me hold on to her other. I was so embarrassed . I was scared. I didnt know if my feet or legs were gonna just completely give out and not lift any more.
I was also heartbroken. Reality not only sucks…but, it hurts.
It’s so easy to forget day to day when I dont walk far…I walk from the car into the store but have a cart…or from my car to my office and am fine. Sometimes am getting “flappy” once I reach my office but this whole walking less than a block has finally kicked me in the face.
After sitting for a while during the show, I was fine again for about another 1/2 block or less and then I had to hold on to her again.
What can I do. My question is…is this the fatigue ?
I’m just never going to get better. This is the way it is and it will probably only get worse, wont it ? I’m going to be doing the IVIG soon…been off all treatments. This same thing happened to me about a year ago and I havent walked that far without at least the cane, since.
I do try to be optimistic. I really do. Maybe it’s more denial than anything else.
What will it take for me to really accept this stuff ?
I cant say that anything seems more obviously progressed…
ug. I guess I’ve had more than one stupid question here…
What do you all think…[B]fatigue [/B]causes this difficulty with lifting my feet, therefore, I lift my whole leg up higher ?
Best wishes to all,
AnonymousJuly 6, 2008 at 10:29 pm
Stacey, I have exactly the same problems. When I’m not wearing my AFOs, it’s difficult for me to walk out to the end of the driveway to get the morning paper. My walking 1/2 block without them is out of the question. Even with the AFOs, I’m only good for about two blocks before I need to stop and rest. The “high stepping gait” you described, although not in those words, is a classic symptom of CIDP.
I’ve come to realize that since I don’t walk very far or very much, the weakness in my legs is getting worse. Yesterday, I went to Academy and purchased some leg weights so I can begin doing daily leg lifts and squats, to build back some of the strength in my legs. I know I won’t get back to normal until I lick this CIDP thing, but some exercise is better than none. I’m also searching for a recumbent stationary bike. You should also probably think about doing some form of exercise.
You will get better, if you work at it. IVIg seems to work for most people, once the proper dosage and frequency is determined. Exercise will make things even better. My neurologist is a “glass is half full” person. He’s reminded me a couple of times that this stuff is treatable…many types of neuropathy are not. Hang in there and attempt more than you can do right now. We didn’t get this stuff overnight and we won’t recover overnight.
July 6, 2008 at 11:17 pm
How soon before you get the ivig? It has been so long!!!! I am praying for you that it will be soon and once it starts, that you and your doc will be aggressive and vigilant. YOU ARE GOING TO GET BETTER! You can’t think otherwise and you have to do what it takes to get better. Once you figure a treatment plan out, you will be on your way to getting better and maybe by next 4th of July you can walk the whole way and stand for the whole show. Since we have been on regular treatments for 8 months out of the 22 Kevin has had this, the changes are amazing, sure he has occassional pains and sometimes gets tired, but he really is almost 100%. I mean running, riding his bike for miles, trampoline for hours. Nine months ago he could not walk to the end of the block to trick or treat, he started tripping again, and getting dressed was hard again. Look where we are now. YOu will be here soon, I klnow it Connor needs his mom!!! I am going to have Kevie join me tonight in saying a big long prayer to God to give you the stregnth to get through this!! I am thinking of you Stacey, ALWAYS. Have a restful night and dream about going to the park or the zoo with Connor next year.
Dawn Kevies mom, your super duper cheering section!!!
AnonymousJuly 6, 2008 at 11:36 pm
Stacy, if there’s one thing I decided on is never to give up. I’m so afraid that my legs might atrophy since I’m in my power chair most of the day. I hate to exercise but every other day I get on the exercise bike using a small step ladder. I pedal for two and half minutes and my legs get like butter — but I still do it. I haven’t been able to get past the two and a half minutes. I will not give up my computer, the forum. Since I can’t type I use a microphone. I refuse going downstairs occasionally, to watch a movie on the big screen or to adjust the water sprinkler system. I sit down on my butt to get down there. Once downstairs I use my old rollator pushing myself goose-stepping to the couch. I don’t know if I’ll be getting better. IVIG isn’t doing much for me and I’m still waiting for results from the Rituxan which might never happen. Regardless, I won’t give up.
I’m glad I’m alive, I’m glad I can still laugh, enjoy my grandchildren, enjoy my wife’s meals, the new BLOG she started and the wonderful online scrapbook she discovered today and worked on all day. Life is an adventure.
Don’t give up, Stacy.
AnonymousJuly 7, 2008 at 12:07 am
I have the same exact problem. I look normal and actually have really
good strength for the first 50 feet….then my legs just turn to jello.
I have constant tingling and tightness so I don’t notice it that much during
the day it’s the night time or when I sit still that I feel the pain. I always
use my cane because of this except in my own house where I lean on walls
and counters to assist me am not aware I am doing it. If I know it will be a really long day with a lot of walking (Disneyland,mall etc…) I will take my
walker which I hate but it is a lifesaver and I can’t afford to be vain at this
point. My daughter is too big for a stroller but enjoys sitting on the chair and having me push her (she only weighs 42 lbs)then I have a place to sit
when I need to rest. It also came in so handy when I had to apply at the social security office, it was so crowded with only middle seats I went out to my car got my walker and made my own seat. Then when I went up for my interview the lady looked at me barely asked me anything and told me I qualified. I’m not sure if it was the walker or my medical report? Anyway,
rest assured you are not alone there are probably many of us who cannot
walk too far without getting shakey legs, it is what it is. I am just happy
I am still walking, I do get sad sometimes but hey it could be worse right?
AnonymousJuly 7, 2008 at 2:22 am
I am also having trouble walking any distance when I have a bad day.
I bought myself a portable wheelchair from Costco.com. Costco delivers right to your house!
It comes in a travel bag and it also has a cane. It is only 14 lbs so it is light to lift into the truck. If I know I am going somewhere I get hubby to bring it along just in case. Now if I am having a painful day I just pull out the wheelchair. 😀
UltraLight Freedom Transport Wheelchair by Medline® – Red Aluminum Frame
Weighs just 14 pounds & includes canvas tote and adjustable cane
Item # 126565
Shipping & Handling included *
Rhonda from Canada
AnonymousJuly 8, 2008 at 6:32 am
Thank you all so much for your advice and encouragement, cheering and prayers. I really really do appreciate it. I know I cant give up…and I wont. I know I could really be worse off and shouldnt complain sometimes. I had a bad few days and am back to myself again…fighting every flappy step of the way.
IVIG is overdue…it’s my own fault. I need to give it another try and I am calling the dr today.
Thanks for all your hope……
have a great week,
AnonymousJuly 8, 2008 at 7:43 pm
[B][I]”I’m just never going to get better. This is the way it is and it will probably only get worse, wont it ? I’m going to be doing the IVIG soon…been off all treatments. This same thing happened to me about a year ago and I havent walked that far without at least the cane, since.”[/I][/B]
Nobody knows what tomorrow will bring. Things could get better. With CIDP, you just never know what’s going to happen. We each seem to react differently. Who knows, someone could come up with a cure. Never give up hope.
I have learned to always carry my cane. Besides occasionally needing it for balance and support it comes in hand to get things off the top shelf in the grocery store. It also great for hitting balls at the dog park for the dogs to chase. 😀
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