Clothing Questions

[AP1967]

Hi. This may seem like a silly question, but I am curious what other people have done.

I have limb onset ALS - my right foot is dropped and right leg is very weak. I have an ankle AFO. I can walk with walking sticks (sometimes uneasy). I just got a rollator. And I have a transport wheelchair when I need to going longer distances.

I clearly will never be walking in shoes with heels. I mostly wear sneakers and teva sandals with straps. Sometimes I wear Birkenstocks when I know that walking will be very minimal (and I have assistance). So, do I get rid of all of my heels, including boots with heels now? Or when I am in a wheelchair, will I be wishing I had my cute shoes for show?

I definitely have too much clothing, always have had a lot. And post COVID, I really don't "dress up" as often. I can probably lighten my wardrobe as well to things I think I really will wear and some special items.

How have you all handled this? My question probably applies to the ladies here, but men are welcome to chime in as well.

 

[Nikki J]

The Vain Girls Guide to ALS

A practicle guide to the woman who has been diagnosed with ALS.

issuu.com

She said keep the cute shoes for the wheelchair!

What have I done? I downsized a lot when I moved but have accumulated again. I kept a few favorite shoes but in my case my weak foot has grown! Or at least the arch relaxed. It is 1/2 size bigger than the other and it is all in the midfoot. I am 100% sure my feet were the same size before.

The idea to downsize the wardrobe is good. Keep the things that make you feel good and are easy to put on.

 

[ShiftKicker]

I admit, I got rid of all my heels straight off. I also jettisoned my office wear, sports gear and going out clothes. It was a mild tantrum, but I am glad I did. I don't think I have the energy or emotional bandwidth now to start clearing out all the things from my past life so it's good I did when I could. I figure, if I have opportunity to need such things in the future, I would purchase at that time. So far, I have not needed (or desired). With regards to keeping your favorite nice shoes for when you wish to wear them, absolutely keep them!

 

[Clearwater AL]

I have gone from a muscular 220 lbs down to now 166 pounds.

I have given my 36s to a relative, then I gave 34s to his father.
Now I’m down to 30s and they are loose. But… I gave up
drilling new holes in my belts. Now I use bungee cords thru
the belt loops. I found adjustable ones at the hardware section.

They keep my pants up securely and best part they stretch
when I sit down. Can’t use suspenders because of my shoulders.

Improvise, adapt and overcome. An old Viet Nam phrase we
used.

 

[Lori7]

Hi. I’ve gained 45 lbs. since my diagnosis, so I bought some plus sized clothes, and donated all the smaller clothes to charity. I just don’t want my husband to have to figure out what to do with all my stuff when I die. I threw out or donated most of my shoes and dress boots, because my right foot has swelled up 2 sizes. I’m giving most of my jewellery and musical instruments to my sisters and in-laws. I can’t play violin, etc., because my right hand hardly moves. I’m also just throwing some stuff in the garbage that I don’t think will be useful in the time I have left.

It is sad, in a way, but it also makes me feel better because my husband and family can just be sad when I die, instead of having a lot of work to do to sort junk on top of everything else they have to deal with.

 

[AP1967]

Thank you all for the feedback. I think I will do some clothing and she clean out, still probably keeping more than I need, but lightening the load some. I will keep some of my favorites even if I don't end up wearing them again. I appreciate the permission.

 

[annlee]

I have LMN almost 4 years. I quickly could not get shoes on my feet due to toe clawing and spasticity. I bought 6 pair of new sneakers a 2 pair new boots. Nothing worked except a $10 pair of sneakers. I donated everything except my very favorite dress boots and a heels on year 2. Six months ago I donated everything else and hope someone enjoys them as much as I do. I got rid of 85% of all clothes. What I still have is comfy and stylish. I still can only wear the $10 sneakers. As things change, your clothing needs change. Keep only what you love and what actually works. Keep stuff that does not wrinkle and is easy. I live alone and am now totally wheelchair dependent. This was never in my life plans, but I get up every day expecting something joyful and wonderful- and never fail to find it. This disease had changed everything and yet it has changed nothing. I still try to live my best life every day. Best of luck to you!

 

[SandyMK]

Our son is 2 1/2 years in, and as soon as he was in a wheelchair full time, his feet swelled and would not fit into any of his old shoes. They are swollen and purple in the winter and icy to the touch. When he raises the feet of the chair, they drain almost immediately, and get their color back, but are still swollen.

Check out Billie shoes online. I think they started out as kids shoes, but expanded their line. They are very cute shoes that have a zipper that goes all around the top. You just drop your feet in and zip up! He wears them whenever we go out, but most of the time he wears just socks. --a side tip here: he found "diabetic" socks online that are so soft and stretchy, they are a dream to put on. We could not get any of his regular socks onto his swollen feet.

 

[lgelb]

It is a good idea to tilt the wheelchair back periodically in conjunction with raising the footrest, to really get the feet up and shift position. As well, many PALS find an ongoing comfortable position with some level of tilt/recline and slightly raised feet.

In addition, gently using the hands on one or both sides of the foot to manually move the fluid up from the foot/ankle toward the center of the body can be helpful.

 

[KimT]

I gained some weight so I got rid of all my work clothes, heels, and other shoes. I wear Orthofeet sandals and Brooks running shoes. I wear yoga pants in the Winter and sweat shorts or yoga shorts in the Summer. My bathing suit collection has expanded. We have very mild Winters in East Central Florida but I have a few nice long sweaters for cooler days. I wear them with yoga pants. I buy larger than I need because I hate constricted clothing and they're easier to pull on. Lots of tank tops and a few hoodies.

I worked in the business world all my life and was more than happy to rid myself of business attire.