I miss my shoes

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amyst

Member
Joined
May 4, 2012
Messages
23
Reason
PALS
Diagnosis
03/2012
Country
US
State
tennessee
City
my town
My life is changing so much. The major things I seem to block out emotionally easier. That probably isn't a good thing. Often i feel the need to cry, but the tears won't come.

Anyway, back to my shoes. I've been going through things and getting rid of as much as possible in preperation to move to a much smaller place. What has hurt the most is my shoes. All of my cute summer shoes, my boots, all of my dress shoes have at least a 4 inch heel. I've always loved heels. I'll never walk in them again. They are all boxed up and ready for goodwill.
Now I have two pair of tennis shoes and a very unattracive pair of black flats that have to pass as my dress shoes. These are the only shoes I can get my brace in for my drop foot. And I certainly can't walk in any without my brace. All I wear now is workout pants and tennis shoes.

With so much else to be concerned about this seems so trivial, so I haven't mentioned it to family.
I decided to share here. I guess wardrobe changes are pretty common for pals.
 
Save your favorites. Put them in a box and keep them, You might be able to still wear them when you graduate to a wheelchair. Don't let ALS take anything from you that you can help. Really. (and welcome to the forum, I hope you make many friends here)
 
You can look into these:

Aetrex makes a style of mary janes that are patent croc leather, really cute, They have removable insoles and worked with my AFOs when I used them. (I had the thin carbon type) Check out that brand. Also Propet brand makes a sandal with a closed heel, removable insole, it worked with my AFOs. I had to stop using the AFOs as my problem was actually higher in the leg rather than mild foot drop and they put too much stress on my knees. I resorted to using a cane instead. Not the usual way people handle this, but I didn't want you to think I was not walking any longer, just had to change the method of support.
 
I know what you mean even though I'm not a heels gal. But you can still dress reasonably nicely, and should if it makes you feel better. (but if youre comfy in sweat pants, go for it.) I'm a big fan of L L Bean 'perfect fit' pants: knits but decent looking and very comfy, just wish they came in more colors. Do what you can to feel good!
Sue
 
Welcome to the forums!
We all (ladies) understand what you're going through with the wardrobe changes. I'm not a hi-heel kind of gal but was devastated to have to give up my collection of clogs and flip flops due to foot drop. Save a few for when you progress to a PWC. Check out "The Vain Girl's Guide to ALS." ( I think it's a dot com) My daughter just bought me a pair of really cute sandles ( with a heel cup) from J C P e n n y. They have a pretty floral cloth that runs through loops around the shoe and can be tied at the ankle and/or wrapped around the lower calf. The cloth offers the opportunity to be loosened and expanded if my feet are swollen. Had to go up a half size. There are some adaptive clothing sites on the web that offer skirts and jackets, etc that are cut for an excellent drape for someone who sits in a wheelchair. Many of us are dealing with buddah bellies due to the weakening of abdominal and core muscles. Some maternity tops give us that extra length and fabric needed to help cammoflage it comfortably.
Good luck.
 
I wear yoga pants rather than sweats but it was very hard to give up "real" clothes. my sister found a clothing line that makes flowing cotton pants that are very nice and as easy as my yoga pants. they are also very lite for the summer. the company is tipsy gypsie( i know made for us tipsie gypsies!) they were fairly cheap also i think.
 
If you can buy a dress shoe in a W, you may still be able to wear it with the brace, assuming your legs themselves are strong enough... after all, our feet are already in the "Barbie" position aren't they?

I miss my blue jeans... I have a pair of the l l bean pants, and like them, but a bit too stretchy at times... trying to yank them up with one hand, and it gets caught and stretches rather than moves... also wish they were in more colors, I'm soooo sick of black stretchy pants. Though I have found that pj pants in capri lengths are good and in colors.

I also miss the fact that whenever I bend over, I feel the growing "budha" belly from loss of muscle...!

I miss the "old" me, gardening, walking, cooking, shopping, DRIVING, coughing! Sitting in a bathtub, standing in a shower, going up my stairs...

Sorry for the whine... but I know how you feel...
 
***LIKE*** helen
 
Thanks rose for that advice about keeping some shoes. I just can't see myself wearing my heels in the wheelchair but definitely some of my others.
I'm dealing with more than just foot drop now too. It is proggressing fast up my right leg. My right calf is just mush and above my knee the right leg is obviously smaller and it's weaker. I really need to start using a cane. Prabably while still using afo.
I checked out the aetrex site and just might do some shopping.

SueG, sweat pants aren't my first choice for summer heat. But I have a nice selection of black, grey and brown right now.

Mamap53 thanks, I'm gonna check out that site. I havesome sort of buddah belly going on. I have actually gained weight since my diagnosis. But my stomach is weird i ffeel like i look pregnant, and when i try to suck it in my muscles shake like they're too weak.


Marypat, thanks I'll definitely be checking out the appropriatley named tipsy gypsie

Helenl, yeah i have the barbie angle with some funky curled up toes. I should get some capris and shorts. The afo going up to the top of my calf has stopped me. I really need to get over myself i know. I can still do a lot on the list that you miss.
 
I concur! Save the ones you love!
I collect Brighton shoes and was sooooo sad when I got my AFO and couldn't wear them anymore.
However, with the wheelchair days looming overhead and about to crash down at any minute, I find it's not so scary when I keep telling myself, "Then I can wear my Brightons! Yea!" :D
 
My AFO has a constellation on it, no boring beige for me! But don't wear it, as I need it with shoes, and it immobilizes my leg too much. I find that keep moving my legs and toes much better, especially since I have blue cold feet much of the time.

Have you checked into any supplements yet? Or started Rilutek? Many of us take Creatine (not with anything else added) to help maintain muscle mass... Don't know if it's working or not, but I swear I can tell the difference in my legs the next day after skipping it. And I take only 5G daily as that's the limit the clinical trial I'm in will allow.
 
Shoes what are they? I don't seem to have those in my vocabulary or my closet.

I didn't seem to mind those leaving as much, but not too long ago, my 19 year old daughter was receiving 2 awards for her college studies. Well, I had a knit dress on and we arrived at her school and then I saw it: The Look of Horror. Where are your shoes? Didn't bring any. You can't go in there without shoes, everybody will be looking. I said Na, they'll be looking at me in the chair not at my feet. She got a pair of sandals from her car. And guess what? I still got the stares. That's what you get for living in a small town.

Now I don't know if this were mentioned earlier, but there's an ad in the M D A Q U E S T mag a zine that shows the break away shoe. Still not stylish. Have you looked for tennies in the wider width? KE DS come in a wider width and so do some of the sporty brand shoes. SPE RRY's come in a wider width too and are all the rave where I live. They even have them in cute canvas prints. I lost mine to my 12 year old.

Now see, this is just a good rea son to go out shopping. You honestly don't have anything to wear. Sounds good to me!
 
Hello Amyst,
I understand......I am in the same mode......so many things are going out the door.....things that were important to me before but really hold no place in my future.......I sold my 2000 Formula Trans Am.....it was so nice.....Red with Black racing stripes.....but my wife would never drive it so I found it a good home......I never realized how much Stuff we had around the house that we never really used......but we like our Stuff !......I get an appointment see Dr D at Vandy on 19 July......then I will start going to the Vandy ALS clinic.....will I be seeing you at the ALS clinic in Nashville? .....when did your ALS start?....it does seem to be moving fast.....mine started in Nov 2011 with twitching in my thighs......I was officially diagnosed by my neurologist on 24 May 2012 after he conducted numerous tests......I am still dealing with weakness in my right arm and right leg but am able to get around.....with a limp.....I have been praying for a cure......I had been praying for so many different people I have seen on this forum when suddenly I realized a cure would help everyone.......I hope you level off and your ALS progression will pause for you my online ALS friend........cheers....fp
 
I don't think your feelings about the loss of your shoes is trivial at all. There are far too many losses with ALS. When we had to literally shove the couch to the side of our family room to make room for a lift chair, I cried. I just wanted the symmetry of the room and some order in our lives. Of course, my husband's comfort was more important but it really helped me when a few people recognized how much it bothered me. Some of your family may understand how you feel about your shoes and all that they symbolize.
 
My AFO is clear/white and is one solid piece, no hinges. I don't wear it much around the house. I've worked out a way to kinda drag/slide that foot even on the carpet. But it doesn't work when out. I have a pair of sketchers and adidas walking type shoes. With the sole out they fit perfect. I have a narrow foot and it works great with these. The couple of times i have exhausted myself shoe shopping, some of the shoes only worked with a wide but would fall off my nonbrace foot.
My black shoes are tight on brace foot though.
And then I have my lovely knee high socks. I liked wearing my husbands dress socks but the heel is halfway up my leg and the velcro at top of brace ruins them fast.

Helenl, my lower leg and foot is ice cold too and a rainbow of colors. They really get colorful after a shower. I don't know why. I sit a lot of time on a shower chair and don't use real hot or cold water. I take multivitamin and omega 3 at this time. I have a script for rilutek but haven't filled or decided on it yet. I don't use creatine. My husband used to, doesn't it keep fluid in muscle or something?
 
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