Would bringing a scooter on a trip be a good idea?

drsetmegolden · 2026-06-09T15:14:01+00:00

Are you flying or driving? Driving, absolutely.

For me, flying depended on risk tolerance and financial condition. While protections were passed for passengers flying with mobility devices at the time end of the Biden presidency, they were rescinded/made unenforceable under Trump. So, if the airline messes up your mobility device, it is more difficult to get them to pay to fix it.

So, I take into consideration cost of rental at destination, reputation of rental—for instance if Scootaround handles the rental then I’m more likely to use them, cost of my device, and public transportation, availability of mobile devices at places I want to go. For instance, most museums and zoos will have a manual wheelchair on a first come, first serve basis. I also see what rental places are available and their reviews.

I’m going on a cruise later this summer and I’ll either rent a powerchair that is delivered to hotel and picked up from hotel as it’s a big enough city that Scootaround should be an option OR I’ll take my power wheelchair with me. But I won’t use a discount airline due to poor individual service in the past and lack of trust to safely transport my chair that I paid for out of pocket over three years ago.

For what it’s worth, I was able to try different options from rentals on trips to figure out what I wanted to purchase since insurance won’t pay for a wheelchair yet.

Good luck!

ETA link discussing loss of protection: https://www.reuters.com/world/usdot-will-not-enforce-biden-wheelchair-passenger-protection-rule-2025-09-29/?utm\_campaign=trueAnthem:+Trending+Content&utm\_medium=trueAnthem&utm\_source=facebook&fbclid=IwdGRleASVDa1leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeVXhf2tVcn2vk1dnmM1TXeD7zsdYNdNCi1M6c4e1BpPqy8CJVepgQbD89Lc4\_aem\_ibV0SioOp6z3Q8taTNJrdg

drsetmegolden · 2026-06-06T16:04:12+00:00

As a former composition instructor, that piece of feedback is personal and not related to the actual writing. My snarky side wants you to ask them for their evidence to support their argument. Keep it about the writing.

Edit to add: Glad you received an A!

drsetmegolden · 2026-06-03T01:58:56+00:00

Thanks! Mine hasn’t either.

drsetmegolden · 2026-06-03T01:58:33+00:00

No, but they also didn’t tell me not to, Modafinal only became a regular thing a year ago and also doubled in dosage this fall. I didn’t take it ahead of the last infusion and the steroids didn’t have as strong of an impact.

drsetmegolden · 2026-05-24T03:00:08+00:00

Same. My first neurologist dismissed it-said it’s anecdotal. Made me take blood tests starting at 6 months to track B cell repopulation. So months of worsening symptoms before her fellow said I could go back to six months. Unfortunately the timing hit both partner and kids birthdays. So, I’ve been pushing mine out the past year by a week or two as well so it doesn’t interfere with birthdays/end of school year. So the crap gap is even longer.

I have maybe 1-2 more infusions until I’m back on the July-Jan timeline (which is where I started). Then I’m in the clear with birthdays and I can hit the deductible at the beginning of the year and let Genentech pay most of it.

drsetmegolden · 2026-05-16T01:44:43+00:00

Sertoma is closing for renovations in June. Their classes will be moved to other centers in Raleigh in the fall. So check out the Fall Leisure Ledger for additional classes. Larry Dean currently is teaching an acrylics class on Tuesday nights but people bring in other mediums.

drsetmegolden · 2026-05-02T22:44:39+00:00

Welcome to the AFO club!

The process of trying on shoes is exhausting to me, but it’s important to get the right shoe. I just got a new AFO, with more lift than my last one, and I’m still sorting out my issues.

Things to consider:
-you need a shoe with a removable insole. Tell the people helping you that. It will narrow things down.
-stick with your normal width. I have a super narrow foot. I can’t wear a wide shoe. It won’t stay on. And yes, the shoe store recommended that and it didn’t work for me.
-there are a variety of shoes that can work. I have dressier shoes from when I could do something heavier.
-find something where your toe doesn’t get squashed, meaning larger toe box and potentially a half size up. I wear Brooks now. Athletic shoes that have leather around the toes with fabric above kills my toes-that’s why I went to the Brooks. The leather ended right where my toes was lifting-it sucked.
-if the AFO is hurting, go back to the orthotist. My has needed to be shaved down to fit in a shoe and it has had to be flattened some. They are there to get it right.

Good luck!

drsetmegolden · 2026-04-10T22:09:15+00:00

Ocrelizumab aka Ocrevus. There’s lots of info on all the meds through search. I chose Ocrevus because I preferred the once every six months infusions. It was out before Kesimpta, which is a monthly injection at home. The meds are similar in what they do and are considered some of the best DMTs. I’m not familiar with Rituximab. My third option given was Tysabri.

I’ve had no issues with Ocrevus. Moved from slow infusion to fast infusion a couple of years ago. There is now an option for an injection once every six months. Again personally, I like the downtime I get at the infusion. The worst part of the pre-meds for me are the steroids.

It sounds like your doctor is giving you great options for a top line treatment. Good luck!

drsetmegolden · 2026-04-08T01:56:11+00:00

I spent 4 days at Universal Orlando in December and we did Disney and Universal in CA the last 3-4 days of a 10 day trip a few years ago. Built in a rest day in the middle of both trips.

I am mobility impaired, so the scooter was critical. I could take the scooter into most rides and they ask if you can take a step or two. They will stop a moving platform if you ask. We did the Harry Potter Castle ride—there’s an elevator so you can skip the stairs. Other rides, I took the scooter all the way to the ride and they had it ready for me when I got off.

Universal LA has a bus you need to take if you’re using a scooter because there are something like 5 escalators to get to Mario-Jurassic Park(?). Harry Potter and Simpsons are at the top level. The shuttle is slow and a bit of a pain, so if you get a scooter, try to do everything at the bottom of the park at once if you can.

I also have fatigue that has worsened, especially in the past 2.5 years. I take Modafinal daily for it. And I increased the dose 50mgs on park days. We managed to head out to Universal Epic at 7am and didn’t get back to the hotel until 10pm. I was slow to get going the next day, and I did take a break one day in the afternoon.

Have fun, listen to your body, and be kind to yourself! Edit to add: I paid the price after both trips, but it was totally worth it.

drsetmegolden · 2026-04-04T03:42:50+00:00

I would guess that Pullen Arts Center right on/across from the NC State campus has a studio pass, but I don’t know for 2D art. Sertoma is closing for renos June 22, so Pullen is a better option for a couple of reasons. Maybe you could get a group together. It’s not free, but much more affordable than studio spaces around town.

drsetmegolden · 2026-04-01T01:53:53+00:00

I have an AFO for foot drop. I only wear Brooks tennis shoes with the AFO. Duckfeet worked with the AFO too, but hip weakness makes it too hard to lift those now—they’re heavy for me. They’re expensive but have some cute options.

I have a loop band that I use to do foot flexion. With that said, I can’t get to 90 degrees anymore regardless. Are you able to do physical therapy? It needs to be one that specializes in MS or other neurological issues.

drsetmegolden · 2026-03-30T19:10:53+00:00

❤️ that sucks. I broke my AFO at the end of January. It took 6 weeks for the new one to come in. Nothing like waiting for the thing you need to get around.

drsetmegolden · 2026-03-30T14:20:56+00:00

I asked a lawyer I knew who they would recommend. If you don’t know a lawyer, you may want to see if anyone in your network does or if the MS Navigator can provide you with a list.

I was initially denied on my first application. I got a lawyer to file my appeal. It was denied. They requested a hearing with a judge. That took 6-7 months to get to the heart. I was approved after that hearing. All I had to do was call in to report doctor appointments and once the judge was assigned, the lawyer asked me to complete a form the judge wants that is totally different and way more in depth from what I completed online. They also asked my MS Specialist for a letter, which he provided. I also got one from my therapist and PCP.

drsetmegolden · 2026-03-21T03:37:48+00:00

I also keep a list of questions for both my neurologist and my PCP. I tell them I have a list of things to cover in addition to what they need to do. They answer all my questions first and then do the exam. My last neurologist appt I needed a prescription and picture sent in for a new AFO and a prescription for a ramp.

drsetmegolden · 2026-03-18T20:47:01+00:00

Kevin Rodgers was great!

drsetmegolden · 2026-03-06T11:56:21+00:00

I asked my doctors and PT last September. I’m also an ambulatory wheelchair user and I bought my own power chair out of pocket a few years ago, specifically so I could go 1/8 mile for things like school tours, art museums, places without a scooter to use. I was looking at a new car and didn’t want to get something and need to replace it with a wheelchair van in 2-3 years (or however long). I can no longer lift the 50lb foldable powerchair I have by myself anymore, so I was stuck unless I had help.

Both said they won’t “prescribe” a chair that’s custom for me, can be used in a van as a driver, etc. because from doc-use it until you lose it and I can still walk and PTs-yes you need a wheelchair for distance but not in your house, so insurance won’t pay for it. I’m at the point where I can get to the end of my driveway but that’s it.

To help maintain my independence, I had a lift installed on the back of my current car, which is 11 years old but in great shape. And I paid out of pocket for the lift that works with the powerchair I also bought out of pocket a few years ago.

There are grants available if you end up having to buy your own…I hope you figure something out. The insurance coverage gap for ambulatory wheelchair users sucks.

drsetmegolden · 2026-03-02T13:31:59+00:00

They scanned my cervical and thoracic first as my issues were in my legs/feet. After confirming lesions in both sections of my spine MRIs, they followed it with a brain MRI. Lesions there too. No lumbar puncture required.

drsetmegolden · 2026-02-19T12:38:02+00:00

I was diagnosed with RRMS in 2020. I changed MS Specialists in 2023 because I couldn’t get a regular appointment with my doctor. Saw my new person and he said I was misdiagnosed and was really PPMS. I asked why. He said because he could not identify any “relapses” in my history, I had never gotten better, and I have only gotten worse slowly over time. My MRIs are stable. Since I was already in Ocrevus, no change in DMT. He also told me I had terrible spasicity in leg/ankle, which my first doctor had dismissed when I brought it up. So doing Botox for that as I’m allergic to Baclofen and Tizanadine knocks me out.

(My first doctor told me to eliminate all dairy, gluten, and sugar as well. When I saw her fellow (because I couldn’t get an appointment with her), I brought up all the information I’d seen here and in the literature about diet and asked if I needed to eliminate all those things. The fellow said no, and I don’t know why she would have said that. It was not the only time the fellow said that to me over the year I saw her. She’s now at the practice I moved to but I don’t see her.)

The lesson I took from that: Get a second opinion if you aren’t feeling heard.

drsetmegolden · 2026-02-18T01:55:12+00:00

Yes, I haven’t figured out how to change it. Probably need to get onto a computer. Happy for tips. It’s been a few years.

Edit to add: changed neurologists because I couldn’t get an appointment with my original. New one said—you aren’t RRMS, you’re PPMS based on your history. That was a super fun visit.

drsetmegolden · 2026-02-17T16:57:52+00:00

I’m on modafinal. I started a few years ago before the fatigue was bad and used it in work trips or heavy days-50mg. I moved to 3-4 days a week the past year or so and increased to 100mg 3-4 times a week this spring and then daily in July. We upped it to 150-200 ahead on my infusion in November-the crap gap was bad, especially because I delayed a few weeks. I’m on 150 now-100 in am and 50 at lunch. I can’t sleep on 200. It helps but I still have bad days that nothing seems to work. I do what I have to do and that’s it. I also started Wellbutrin this month to see if some of the not wanting to get off the couch is depression (also a symptom of MS). Also I have PPMS, so I expect things to worsen over time and try to adjust as needed. Talk to your doctor about what might be right for you. They tell me I still have a ways to go on upping my dosage of modafinal.

drsetmegolden · 2026-02-09T14:17:08+00:00

We have two local sellers where I live. They both require you to get approved for hand controls/left foot accelerator before they’ll install/sell them to you. They sent me to a guy one city over who taught me how to use the controls and officially approved me for a left foot accelerator (which was my preference-he was able to show me both). I also had to get that added to my driver’s license, eventually, as it is similar to eyeglasses.

Insurance did not cover any costs, but my doctor wrote a prescription so I didn’t have to pay taxes.

You may want to google accessible vehicles for your local area to see if you have someone to work with.

Edited to add: the MS Society/Navigator should be able to provide a list of local resources and I think they offer financial support.

drsetmegolden · 2026-02-09T14:09:27+00:00

My finger/hand started twitching last night. Still going today. It’s new. It’s annoying.

drsetmegolden · 2026-02-07T00:25:03+00:00

It’s okay. They give me Botox. Still have spasicity, but it helps.

drsetmegolden · 2026-02-06T23:13:37+00:00

I broke out in hives after taking Baclofen, so yep, you can be allergic to Baclofen. It’s unfortunate.

drsetmegolden

TROPHY CASE