Personal style and ALS

Status
Not open for further replies.

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
16,376
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
How have you adjusted your style because of ALS?

I am thinking mostly hair and clothing. I think it is hard to change because it can be another hit to self image but anyone have a fun change?

my sister who was always stylish cut her hair short and wore high tops and skirts. I think she missed her old self but she looked adorable.

I tried to cut my hair but it didn’t work out so well! The sneaker afo combo has called for shorter skirts and since I am not working I am generally more casual- even more so since covid
 
Oh, this is a good one, Nikki.

I have changed so much about both my appearance and clothes since diagnosis, but it has been from a mental, rather than physical limitation, perspective.

First off, very few people I know but who haven’t seen me in a couple of years would now recognize me on the street. I grew up as a stereotypical Florida beach guy, with blond hair that was nearly waist length until my 30’s, then middle of the back length or a little shorter until my diagnosis.

However, it had been thinning pretty fast since my 50’s, so when I got diagnosed my first desire was to cast aside my old skin and start on my new life, and the hair was the natural first step. I literally walked into the bathroom a couple of weeks later and shaved my head. Now THAT was a rush, I’ll have you know.

Plus, I knew that in time dealing with long hair would be really difficult. Luckily, my skull was not grotesquely malformed once it was uncovered, so I guess it looks okay. Amazingly, my wife and daughter still recognize me, and they now love it. I do keep it wrapped in a bandana much of the day, since I discovered bald heads get cold and sunburned. Who knew? My daughter gives my head a rub for luck before she takes her grad tests.

I also grew some stubbly grey facial hair for the first time in my life. Not sure about how it looks, though. I never could grow much of a beard, and am partially convinced it has more of a “standard wino trim“ appearance than the distinguished look I was going for.

I am still fortunate to be dressIng unassisted and with very little issue (except for the moaning and groaning when I move my shoulders the wrong way). But I practically live in thin sweatpants. During hot weather, I don’t really like wearing shorts and t-shirts anymore, which I basically lived in for most of my life. The reason is all the twitching...I just don’t want to see them. I get too distracted watching them If I’m sitting down, and they are a constant reminder of what I have. Out of sight, out of mind.

Whew! That was probably way too much information. But there you go...Kevin
 
Last edited:
A super makeover Kevin. Good for you. That took a lot of courage with the hair.
 
Carried over from my military experience into civilian life I always
kept my shirt tucked in, belt buckle centered, hair cut short, shirts
pressed (I pressed them), I even pressed jeans so they had a crease
in them, shoes shined, tie up shoes. Shoes, belt and watch band the
same color (brown or black), shaved every day.

The days of summer when I wore cut off jeans and sneakers have
passed, flip flops are too dangerous to wear and tying up
sneakers... forget that. :)

Now… I’ve got into that new “don’t tuck it in look” advertised on
TV, I don’t press my shirts, don’t press my jeans, (too hard to do),
I wear loafers, I shave about every three days, being the only hair
I have left now is on the sides and back that’s easy to trim, I don’t
worry what color belt I wear because my shirt is out, (Ann has to
button them for me), what difference does it make if the shoes
don’t match the watch band. And I don't use our tanning bed
anymore... what's the sense. :)

Style... is a thing of my past. Now... It Is What It Is. :)
 
Miss flip flops and sandals.

if you want to Al you can get something called lock laces on Amazon. You can replace regular laces with them and can make tie up shoes slip ons.
 
Ann and I used to go to an upscale nightclub here, every year we were
invited to the Invitation New Years Eve Party at the casino.
I mean put it on... :)

Well... here in (North Carolina) we would go to weddings and I'd be
dressed better than the ushers. :)

Ann used to say my theme song was "Sharp Dressed Man" by ZZ Top.

All that is now in zip bags hanging in the closet... maybe some day
somebody may be able to wear it and appreciate it all.
 
Oh, how I long for the days of cute shoes 👠🥿. I think that has been my biggest adjustment. My girls would laugh and say I was my mother reincarnated. I always had matching shoes, bag and outfits. After my diagnosis I kept all my shoes over 100 pairs just incase I was misdiagnosed and would get better. After realization that this would not be the case I was forced to make some tough choices. I grumbled with every pair that I had to pack up some still with tags. But alas wedges and heels were no longer safe.

I have never been one to wear shorts, and yes I live in Florida. Sun dresses were always more comfortable., so nothing there has changed. I am still able to dress myself and brush my hair but when I start to feel my arms weakening I'll have no qualms about cutting my hair.

We all will have to adapt to changes at some point.
 
I feel like I've had three transformations. 1. Going from in-class teaching to 100% online from home. 2. ALS and 3. Covid/ALS

Prior to going 100% online I wore a suit and low heels. When I got home I changed into running shorts (or sweats in the Winter), running sneakers, and a tank top. I would stay in that outfit the rest of the day and on weekends so I went from work suit to casual workout. Of course, living in Florida, I wore cute sun dresses and sandals. I was never into flip flops and preferred sandals designed to walk in. When I walked the beach I went barefoot in a bathing suit. Florida is casual so I wore sun dresses or even shorts to church.

About a year into ALS I fell and sprained my ankle. That was the end of everything except Sketchers and high-quality running shoes. I have sketchers in two sizes, many colors. One size for Summer and 1/2 size larger to wear with socks. I wear those around the house and the running shoes any time I go out of the house. When I stopped working, right after diagnosis, I gained a bunch of weight and size 4s went to charity, along with ALL of my other clothes. Some of my casual dresses, skorts, and sweats still fit so I just added comfy clothes to my closet. I also got rid of a ton of jewelry. When I moved to the ocean I bought a lot of bathing suits for the pool. I also bought water shoes so my feet wouldn't hurt on my short walk down to the pool

The Hair:
Prior to ALS I wore my hair in many styles. I had long, blonde hair (natural) until I was in my 40s. Then I got it cut in various styles and ended up with an ultra-short style just before I started going grey in my late 50s. I decided not to color and let it go natural. After my diagnosis I kept it short just for convenience but my hair grows fast and I had to have it cut every three weeks.

When Covid hit I was scared to risk getting my hair cut so I let it grow out. Now, it's a long bob. I did get it cut into a short bob but it's already below my shoulders again. I cut my own bangs so now I only need to get it cut every other month. A friend of mine who does hair opens her shop early for me so I'm the first one there. She is alone, wears a mask and dry cuts it in 5 minutes. I continue to cut the bangs about every three weeks.

OK, this is probably too much information but here goes. The only time I wear a bra is when I go to church, visit friends, or play cards with the group. This hasn't happened since last March so connect the dots. Plus the weight gain put me in a D cup and bras feel like they're killing me.

If you look in my closet you will see lots of tank tops, sweats, bathing suits, puffer vests and a few jackets, skinny jeans (with spandex) shorts, hats, capris, and a few pairs of pants. My new size is medium or 10 but I prefer clothes to fit loose so sometimes I buy large sweats for extra comfort. I went from 104 to over 140. I was too skinny at 104. Now I weigh about 135 and feel good at that weight. The weight loss was a result of lots of pool time and activity, plus maybe some muscle loss. I do know some of the loss came from my belly. I'm not worrying about my weight but I don't want to buy a whole new batch of clothes so gaining 20 pounds is out of the question.

I rarely wore makeup and always preferred a more natural look so that hasn't changed.

I always wore contacts or lasik with reading glasses. Last year I got lens implants and it was the best money I've ever spent. No more glasses except sunglasses. The last time (over a year ago) I tried to put in contacts, I couldn't. I tried for an hour, then gave up. That's when I booked the appointment to see if I qualified for lens implants.
 
Not too much information at all, Kim. Believe me, if I were female, I would definitely follow your lead re: bras.

Now, when I start talking about the penis reduction surgery I had a few years back, THAT is too much information. (A joke of course, in honor of the late, great Fred Willard, where I first heard it. Had me laughing the whole day.) K
 
Prior to ALS diagnosis, I dressed professionally for work and wore mostly jeans and sweaters when not at work. I used to put on make up and straighten my hair every day. I also had my hair highlighted on a regular basis.

Now, there is no style or fashion. I wear light weight sweat pants, loose shirts, and “no slip” socks. I just let my hair air dry so it’s mostly wavy.
I don’t wear make up (other than some foundation if I know someone is going to visit).

I will likely soon be switching to skirts/dresses because pulling up the sweatpants is getting ridiculously difficult.

Priorities sure do change!
 
I am enjoying this thread. I haven't had to make too many adjustments yet but hearing what you've all done is helping me think about the future. I started my career wearing suit-and-tie, and then law firms went to "casual Friday". Then, I went to work for a real estate company as "in-house counsel" which meant every day business casual. Years later, I went out on my own and wore whatever the hell I wanted, which has continued through the present. With Covid, of course, there are fewer (almost none) in-person business meetings, so I've transitioned to wearing jeans/sweats and T-shirts/polos along with the rest of the world. Not having put on button-down shirts for a few months, I recently had occasion to put one on. It was a shock that I had no ability to fasten the left cuff button. The other buttons were also a challenge - I could do one or two, and then my hand quits. So, I guess button-down shirts will be the first to go for me. I think I'll be happier in comfy clothes anyway. I should say I've trained my left hand to use a razor and do most of the work when shaving. The truth is I could stand to make other changes to take certain burdens off my right hand and arm, but I'm fighting them to the end. Especially the ones that scream "ALS" to the wife and kids.
 
I started off studying to be a forester. I wore jeans and a flannel shirt just about every day.

There were no jobs in forestry when I graduated, so I made my way in the high tech world, which worked out very well for me.

For the first half of my career I mostly wore coat and tie or a suit. Things became a bit more casual for the second half of my career, with mostly dress slacks and a nice shirt. I still kept a stock of several suits that I wore as necessary for business occasions.

Once I went on disability, I returned to my roots, wearing jeans and flannel shirts every day. I also wear a down jacket just about 100% of the time that I am awake, sometimes with a wool sweater under it. I also have flannel-lined jeans that I wear when I am especially chilled. We keep the house at about 73 degrees, but I am always cold!

I have found that a button hooker really helps with the buttons on my shirts. I can still do the large button on my jeans, but those shirt buttons are sure pesky.

Steve
 
By the time I was diagnosed, I had already been working from home as a consultant for seven years so my style had already changed from normal business attire to Belichick style sweat pants or jeans and hoodies. The one style change I made after diagnosis was to wear oversized shirts and jerseys to make my dangler feeding tube less noticeable. Since I had lost nearly 60 pounds before I got the feeding tube, I had a closet full of oversized stuff.
 
Ha, Belichick style! That's so funny. I used to call wearing a visor "Spurrier style" after the old ball coach.

Steve - I've never heard of flannel-lined jeans but that's something I need. I'll have to look for them. Believe it or not it gets chilly in LA sometimes. It was 43 degrees on my morning walk today. Also I'm gonna look for the button hooker you mention. That's one hooker my wife will allow :LOL:
 
Status
Not open for further replies.
Back
Top