Since I’ve gotten Thelma, my scooter, it has definitely brought about a renewed feeling of independence. Yet, another thing I am very grateful for. My new concern is my legs seem a little weaker. Thank goodness I’m going to physical therapy Wednesday. The therapist will be able to evaluate me. Although, I wasn’t moving that great with my walker in the first place. That’s why I got the scooter!
You see during my hiatus from physical therapy I think I might have been over doing it at the local wellness based gym. I feel so comfortable and at ease there. It is located next to a retirement community. When I go in the morning the gym is filled with older people who are moving at my pace. I see the different machines and get excited. I try as many as I can and then, in less than an hour unfortunately, I’m exhausted for the week! No kidding! I’ve got to find a way to incorporate physical activity into my lifestyle or I will just go crazy. It’s hard because while I’m physically doing the exercise I feel fine. Tricky, right? The effects usually hit the hardest the next day.
Also, I’m currently taking Gilenya but I’m not sure of its efficacy. Don’t worry I’m not going to switch to something else this soon, but dang it I thought I would see more improvement by this point. Okay, it hasn’t even been six months. I know I’m being my usual inpatient self. Somethings just don’t change as easily as we would hope!
At first I was nervous about getting a scooter but now I LOVE riding it! It disassembles simply and can fit right into our sports utility. My biggest worries are keeping the wheels clean so as to not dirty our carpet! Now you can’t beat that.
Needless to say when I do return to therapy I’ll have Tommy, my husband, push me in my wheelchair. My physical therapist didn’t really want me to get a scooter in the first place!
My mama always said I was stubborn!
I know there are people at my work who wonder why I take the stairs up 5 flights a few times a day. I always tell them, “I take them no because I can, and because I don’t know how long I will be able to do so. Many here probably never voluntarily took the stairs. My bet is many who never did no longer can.” As I answer this back, I think of all those with MS who would like to be able to take the stairs, but no longer have an option. I know I would, and probably will, have a hard time if I were in your spot using the scooter. I know it’s irrational, but I have a hard time giving up the micro control of using my own impulse. Heck, I am part of a vanishing breed who still love to drive my manual shift car.
I also recognize that lack of control has been and still is what I hate about MS the most. I think you do a great job in this blog humanizing this aspect for all of us who encounter it.
Side note, during one of my early flares, I kept losing my balance. Running was out as were all team sports I used to play. I did take some solace from my favorite bit of exercise equipment. The concept 2 rowing machine was still a good way to work arms and legs while getting a cardio workout. When I lost my balance, I only fell 6 inches to the ground. Heck, getting up after those just became a part of the workout. 🙂
life well lived, Thanks for taking the time to visit. I remember so vividly when I use to say the samethings! Isn’t it funny how life works out that way?
Hey Nicole!
I saw Montel Williams on Dr. Oz talking about MS and thought about you. I love reading your blog. Although it’s my first time commenting, just know I frequent your blog regularly. Keep up the great work. It’s really enlightening.
By the way, be careful on that scooter. I had to move one for my patient the other day and that baby had some get up and go. I was super nervous. For a mental picture, YouTube “Austin Powers in the moving car”.
Let us know what your therapist thinks.
Again keep ’em coming.
S Thomas, You’ve been reading for a while now.
I’m flattered!
Nicole, I’d like to hear more about your reaction to Gilenya.
I use a scooter in the big stores that have them. The PT wants me to use 2 canes when I walk and I use a rollator walker most times and at home. Does your scooter fit through your doorways? It just takes so LONG to get anywhere.
Thanks for sharing so much of yourself.
Bert,
There really isn’t much to say. I take it night and may have had a minor relapse, but it’s really too soon to evaluate. Thanks again for reading!
Bert,
and yes it’s small, so it fits through!
BERT..BE CAREFUL OF THE WIDTH IF YOU PURCH ONE. Ii HAVE 2 SCOOTERS & BOTH FIT THRU A STANDARD DOORWAY. HOWEVER WHEN WE WENT ON VAC LAST YR THE HOME WE RENTED HAD ALL LINEN CLOSET WIDTH (ABT 20″) INTERIOR DOORS. MY HUSBAND HAD TO TAKE THE DOORS OFF THE HINGES IN ORDER TO GET MY SCOOTER THRU & THAT STILL WASN’T GOOD ENOUGH. MY VALVE STEMS ON MY TIRES WAS GETTING HUNG UP ON THE WOOD WORK. NOW WE KNOW TO ASK IF THE INTERIOR DOORS ARE STANDARD SIZE. JUSY FYI. GOOD LUCK & I LOVE MY SCOOTERS! I USE THEM 24/7 SINCE I CAN NO LONGER WALK ON MY OWN.
Nicole, Good to hear about the scooter. Finding tools that help you, is what’s important.
Hi, Nicole, I had a few bad experiences w/PT, also. I kept working at the one machine where you push your feet against a weighted board. I was up to 130 lbs and feeling great. Then I pushed too hard and hurt my knee. Now I’m trying to workout using exercises that will most benefit my legs. I love the scooter, but I still try to walk as much as possible.
Peace,
Muff
Muff,
Thanks for the comment. Yes,I am very interested in the legs!
Nicole, I think it is wonderful what you are doing. Only the strong survive, and we’ve got to be strong to survive. Thanks for sharing your moments with us. I’ve met some people who don’t want to talk about having ms. I was diagnosed in 1993, and I talk about it because you never know who is touched by or educated by what I have to say.
Keep doing YOU!
Berlena,
Thanks so much! 🙂
I liked your post as I am having trouble going out into the world. My MS has slowly gotten worse over the 20 years and I seldom go out. I have wondered about a scooter.
d
Susan, It just males things easier for me. You never know maybe it would get you out.
Thanks for reading.
Glad to hear you got a scooter. I love mine. . I finally got a lift so I don’t have to disassemble/reassemble every time I get it in and out of the car. That was getting to be too much, and I sure hate it when I have to ask my husband to take a day off work because I need to go to an appointment.
I am leery of PT now. My therapist had me doing strengthening exercises on the machines. While I was actually there doing ankle exercises, my ankles went out. I mean just collapsed – would not hold my weight. I figured as soon as I’d rested they’d be fine again. Never happened. To this day my ankles don’t hold my weight. I’d been using a cane, now my walking ability is zero. It’s hard not to blame my therapist for overtaxing me.
Now I scoot over to the neighborhood pool 3 times a week and give myself a really good workout in the cold water. I’ve started a water exercise class, lots of seniors show up, handicapped folks, etc.
Laurie, Wow! That was hard to read. Sounds like The pool is working out. Its my other favorite treatment!
Nicole,
Yes, keep at the exercise! I exercise in my basement. I’ll set my egg timer for 35-45 minutes and go as best I can. Somedays, it goes well–others, like yesterday, not so hot.
When you get fed-up and stop for a few days, you lose so much-so quickly. I am sure to remind myself that I did something–a movement, an extra rep, anything–to keep myself motivated to continue.
Try simple dumb stuff at home ( I’m good at that) like “Get Ups”. I’ll lay on the floor and try to get up. I’ll struggle to get up–then lay back down and do it again. It’s hard work when your bottom half doesn’t work!
All my best girl!
My Odd Sock, I like. Think simple.
Keep moving something every day the best you can. I made the mistake of getting mad and shutting down and stopping everything, and now I am back to baseline. Do what you can the best you can.
Leslie, I know. I’ll do better.
This… is poetry. Thanks for sharing this simple, and powerful, thought!
Robert, That means a lot…thanks!
SORRY THAT THE P/T DIDN’T WANT YOU TO GET THE SCOOTER; WHAT DID THE DR SAY ABT IT? I LOVE MY SCOOTER! OF COURSE MY CONDITION IS MUCH WORSE THAN YOURS SO MY SCOOTER IS A NECESSITY. GLAD TO HEAR THAT ALL IS GOING WELL FOR YOU; I START GILENYA IN ABT 2 WKS & I AM ANXIOUS TO SEE HOW THAT GOES. TAKE CARE.
Kim, P/T thought I would use it too much. Thanks for reading!
Hi Nicole!
Great to hear you have a scooter, now you can go to malls n window shop! I know it is very hard to give up on the walking thing but your body needs a rest. Too much energy consumed while walking leaves little for anything else. AS for the workouts, you must’ve felt like a kid in a candy store seeing all those machines. Even if you did not have MS, you still have to take it slowwwww. Pick one machine when you go to the gym and master it. See if they have personal trainers to help you figure out what type of workout will work best for you. Exercise is such a strange Catch-22. We must do some type of exercise to keep our body limber yet too much leaves us flopping like fresh caught fish! My solution is to go to group classes with a personal trainer and use a elliptical machine (got it through freecycle.org) the rest of the week. I can manage about 5 min. on my machine and try to make 1 mile a day. My goal is to use it 3x wk., too much and I am wiped out for a day or two. I set my own limits as you will learn to do, and you will feel better afterwards!
Happy trails with your new found freedom!!
Renee
Renee,
Thanks for reading and offering the tips too!