“So, where are you guys from?
“The UK? Do you guys know Totten-Ham?
“See, I follow your soccer and I support Totten-Ham Hotspur. I’m a Hotspur fan.
“Do you know why I support Hotspur?
“Well, I’m a fan of the Dave Clarke 5, and they’re from Totten-Ham, and they support Hotspur.
“Do you know the Dave Clarke 5?”
Guess where I’ve just been to, on my holidays?
Yep, you guessed it.
As a family, we’ve just completed a road trip from San Fransisco to Los Angeles, driving along California Highway 1 for the most part, aka, the ‘Pacific Coast Highway’, aka, my favourite song on my favourite album by my favourite band*. So, this is just a report based on my personal experience as a milk-skinned stick-using pescatarian English bloke with MS in sunny California.
Hopefully there’s a few useful hints and tips if you have MS or if you have a disability, or mobility issues like mine. I don’t use a wheelchair or rollator currently, but there may be things here you will find useful for a trip to the good old US of A if you do.
We stayed in San Fransisco, Monterey, Morro Bay, Santa Barbara, Hollywood, Huntington Beach, and Redondo Beach.
We stopped at various scenic spots en route including Santa Cruz, Carmel by the Sea, Solvang, Malibu, Santa Monica, Long Beach and other little pockets of the wider LA sprawl.
We flew from LHR to SFO with BA on an A380, and with American from LAX back to LHR on a 777.
Please note that this report is based on a trip in the summer of 2022. A lot of places in California were still expecting you to use face masks and have Covid passports. I have also made a number of trips to New York and Florida in previous years when I was a bit more mobile. Some of these tips may apply to the wider USA and some, like the cannabis one, may only be California-specific.
Cars and traffic
A few months before the trip I applied for a temporary disabled parking placard (like a blue badge) from my local government brothers and sisters in Sacramento. I strongly recommend you do this if you’re using a car on your trip. Allow the process to take 3 or 4 months as you’ll need the application to be signed off by your GP or consultant before you send it off, also it allows time for them to send it back to you if you don’t fill it out properly or if (like me) you forget to include stuff. Having said that, we were hiring a car so this is easily the best thing we did.
This rear-view-mirror mounted placard opened-up the world to us. There’s disabled parking everywhere, I’d say more so than in the UK, so this is an absolute must if you hire a car, or are being driven anywhere. The relief of having the priority in a country where the car is king is something that could turn what could be a mediocre and slightly stressful day into one of near bliss. A packed car park at Santa Monica, for instance, had only one space left and it was a disabled space right on the beach.
Also, we basked in the glory of the car park staff at Universal Studios waving us past all the queues of traffic to a spot right at the front gate.
Even on the busiest days, and after battling traffic on the freeways, you could be pretty confident a big beautiful space with your name on it would be waiting for you exactly where you needed it.
Bays and on-street parking are marked with blue paint and cross-hatching. Note that some (but not all) car parks are cheaper or even free if you’re disabled.
Airports and flights
My top airport tip is to get accessibility assistance. A wheelchair will be your chariot as a member of accessibility staff with a death wish will wheel you frighteningly fast through the sea of air-travellers, parting them like Moses on speed. There’s a little bit of self-awareness to overcome if you’re not a wheelchair user, but that disappears as soon as the first barrier is unclipped in front of your nose. It’s such a breeze! Basically, you’re wheeled from the bag check to the actual aircraft, by-passing all the queues at security, though you still have to get up and walk through the scanner, removing belts and dumping stuff in trays like everyone else. It’s just a lot faster and your family/carer can skip the queue too.
At LAX, we were the very first people on the plane being at the front of the queue at priority boarding. The guy at Heathrow even came on to the plane to stow things in the overhead locker for me. We were also the last off, but again, you by-pass the queues at security, so you arrive at the luggage carousel at the same time as everyone else. Simply contact the airports you’re using and in the USA be prepared to tip; in the UK ask your helper if you can give them a good report online (he handed me a feedback card from his shirt pocket after I asked).
Another useful airport tip is to get a sunflower lanyard to show you have a hidden disability. I don’t have one but a friend of mine with ME just used his while travelling in Eastern Europe and said there was even a lounge area for people with chronic fatigue at one of his airports.
On the plane, make sure you get up and stretch at regular intervals. I get violent clonus in both knees if I stand up after sitting for a long time, so I would get up over Greenland while everyone else was fast asleep and hope no-one was watching the guy in the aisle having a standing seizure. Have a walk to the end of the aircraft and back, turbulence, balance issues, and flight crew trolleys permitting, of course.
I have never been asked to explain medications or catheters at luggage drop or security, but as I take a lot of pills, I also take the little leaflets that come in the boxes to justify them if I need to.
Get a hotel near the airport for the last night so you’re not stressed out on the day you leave
Buses and taxis
“Hi, you guys. Are you from the UK? Did you just get the bus? Oh my God, I haven’t used the bus in like twenty years!” Avoid the public buses. They might drive through unsavoury areas unexpectedly. The drivers don’t seem to be checking the tickets in San Fransisco, so our family were treated to a man struggling vainly to keep his trousers covering his arse, and another man staring one of us out while doing a strange dance with an apple as if it was a mystic orb.
There were also people openly taking drugs in one of San Fransisco’s BART station entrances and lying on the floor in our way, so when out-and-about we tended to rely on…
Uber or LYFT: Download the apps if you don’t have them already. One can be pricier than the other, depending on where you are, and if you’re in an out-of-the-way spot (like when we were at Greenwich Observatory in LA) it could be worth using both apps simultaneously as some drivers cancelled our fare at the last minute.
Public Transport in the USA is nowhere near as good as the UK in my experience.
Pace yourself and rest whenever you can. There are benches, but just like home they’re not everywhere. Luckily Americans seem to have an in-built urge to ease your suffering, so kudos to the staff member at a Brandy Melville in San Fransisco who, seeing that I’d been dragged a number of blocks by a pair of enthusiastic teenagers, cleared part of a window display so I could sit down.
Crossing the road takes a bit of caution. Don’t forget to look left initially for oncoming traffic when crossing the road. Also, cars can turn right on red lights, so even though the lights say no, it’s legal to turn right on a stop sign in the USA and there may be someone turning right as you step off the kerb. Also, watch the kerbs. If you’re in a crowd and not aiming for the relatively narrow drop-kerb at the corner of a junction there can be a bit of a step to get onto the sidewalk that you may not be used to. I didn’t trip but can see how it might happen for someone experiencing heavy legs.
In the UK we have bad areas in towns and cities, but in American cities we found our overall sense of ease could change from block to block. We sat for a nice coffee in a cool hipster-ish coffee shop in San Fransisco’s Mission District with people sitting at street tables and old ladies walking their dogs past the window, but after crossing the road at the end of the block, we found ourselves in the seventh level of hell. If you have a mobility issue, you might be on high alert and worried that you can’t run away if you need to.
Medication and catheters etc
Make sure you order your repeat prescriptions, so you have all your medication for your travel and some you can leave at home ready for your return. See also my tips for airports and luggage earlier.
If you use them, take more catheters than you need, and split them across all your luggage in case some of it goes AWOL. I actually don’t use catheters as much when I’m abroad (I guess I eat and drink less and perspire more), but I take way more than I think I need, and as much as I can fit into my carry-on just in case any go missing. Just think that when you’re using them, you’re actually freeing up space in your case to bring gifts and souvenirs back.
Pack some meds for the flight. Heathrow to San Fransisco is eleven hours. If you use an anti-spasm med like gabapentin, you might need a low dose to counteract sitting still for long periods. Similarly, anti-histamines are a good way to ensure you get some shut-eye.
Cannabis is legal in California. I didn’t use any this time, but I imagine you could do some research and find a good shop with a licensed physician to help you try some for pain-relief if you need to. **Imagine a disclaimer here accepting no responsibility for anything that might happen as a result and that this post doesn’t condone the smoking of weed etc.** Just be aware it’s legal and above-board and no one will bat an eyelid if you enter or exit a cannabis retailer. They often look like chemist shops from the outside, you’ll see the stores everywhere, and you’ll smell it on the breeze wherever you go. Obviously don’t take it out of the country.
As previously mentioned, a disability placard in your car will remove a significant chunk of stress from your day.
Most attractions have disabled access. Alcatraz, for instance, has a bus/tractor thing to take you at walking pace from the ferry to the prison for those that don’t need to make a 13 storey climb to the Traz entrance.
Universal Studios and presumably other parks have a queue pass, so if you want to go on a ride but there’s a 50-minute queue, the person overseeing that queue will give you a time to return so that you can just go straight in when you come back. You can spend that time sitting somewhere shady or checking out interesting things nearby.
The rides also have a notice to say whether the ride is suitable or not for someone like you. It’ll say things like ‘this ride is not suitable for people who get motion sickness, or for people with the following conditions…’ and then it’ll list things like heart problems, bouts of dizziness and so on. I found out, on the Harry Potter ride, that I don’t do travelators or moving walkways, with humiliating results.
If you have a disability you may also be able to skip the queue in some attractions. We were ushered into the planetarium at Griffith Observatory in LA, for instance, before everyone else and as I was apparently the only disabled person in to see the show, we had a whole row to ourselves.
A lot of Covid restrictions existed in LA at the time we visited so, before you travel, download your Covid passport to your phone or you could be turned away from some places. Don’t forget a mask as well.
Dining out is very expensive, particularly while the pound is weak against the dollar. If you want to put together a light lunch while on the go, I’d recommend a regular supermarket. In a 7-Eleven the range isn’t as good, but it’s way cheaper and more geared up for breakfasts: coffee, muffins, pastries yoghurts etc
Vegetarian options are thin on the ground. I didn’t find a vegetarian section in the local supermarket. I asked someone behind the counter in a burger place if they did a veggie burger: “Sure!” and when it arrived, it was a bun with some lettuce, some onion, a slice of tomato and some mayo.
On one of our last days, I found a guy on a market selling vegan food, so we ordered 4 boxes for the four of us and he did a deal without us even asking, cutting the price and throwing in an extra box. It was delicious, but I suspected business had been slow for him.
Most toilets have a disabled cubicle with a bin in case you need to throw away a used catheter, pad or ostomy bag etc. Be prepared for seemingly able-bodied people using the cubicle as well though. I can’t remember seeing a separate disabled toilet anywhere except at Santa Monica Pier where they were all just a row of cubicles anyway.
Most toilets have hands-free taps and hands-free paper towel dispensers.
You will be extremely unlucky if you don’t have air con but…
Does it have stairs or a lift?
Does it have a safe in the room?
Does it have an ice machine?
Does it have a coffee machine, and does that coffee come fully caffeinated?
Is your room overlooking a busy street with sirens going past in the middle of the night?
Just keep in mind what I said earlier about the overall vibe of a place changing suddenly from block to block in San Fransisco and LA. Ask at the front desk about dodgy areas. When I asked this question to the guy on the front desk at the Union Square Hilton in San Fransisco, he just said “When you go out the main door, don’t turn left.”
In LA, our block seemed OK, but over the road was a big encampment of rough sleepers, and the next block along was being paced by sex workers.
For the most part, I love ‘em.
If they look friendly and approachable, and most of the time, even if they look unfriendly and unapproachable, they’ll go out of their way for you. They’ll see you with your stick (your ‘cane’) and hold open doors and free up space on seats without being asked. A seemingly able bodied bloke exiting a disabled toilet held the door open for me and asked if I was OK.
They all automatically respond to your thanks with “You’re welcome!”
They’ll find you interesting and ask you questions about London, and driving on the left, and punk music, and Scotland, and Totten-Ham Hotspur.
I tended to attract American dads while waiting for the family to finish their rides in theme parks, including one smiley guy who stopped me from nodding off in the shade (“Hey man, are you still with us?”) before asking me where he should take his brother when they visit London in the fall.
They still say ‘handicapped’ instead of ‘disabled’ though, so you may need to look out for handicapped toilets, handicapped access, handicapped parking etc. In the USA they can be a little behind on the social model of disability in some ways but thankfully not in others and the overall provision of disabled access is generally excellent from my point of view, but you may have a different opinion depending on your needs.
The UK and western Europe were enduring a heatwave while we were in California. The temperature in San Fransisco was bearable and cool – I often wore jeans and a fleece when out and about. It was foggy all the time we were there and all down the coast to just beyond Morro Bay.
Research the weather. Just because it’s California doesn’t mean it’s guaranteed to be hot. We found that once we left the coastal fog zone, things heated up considerably. It’ll be a dry heat though, and I think it rains about 4 days a year in LA. You feel sweaty, but not grimy necessarily, and everywhere has air con.
In the sunnier spots, I found it nice to just lie on the beach and ease my painful calves by burying them in the sand. The sand is hot, and for me, it was soothing to be able to do that.
Have someone meet you at the airport.
Don’t book anything for a week after you return. Your blog posts will be riddled with errors, and you’ll be jet-lagged for a few days after you get home. You might feel OK, but your rhythms are out of sync and your body needs to do a reset.
Try not to feel too sad that you’re back.
Before we left for the States I’d expressed worry to my MS nurse that I would be fatigued and unable to keep up with everyone. She said that was nonsense and I’d be on a holiday high and therefore immune to the darker sides of the disease. She was wrong of course, MS is MS at the end of the day, no matter what you’re doing or where you are, and it can severely impact on your ability and enjoyment of what you’re doing. There were days I had to push through, barely able to walk upright, and days where just ‘one more block’ seemed more arduous than an eleven hour flight.
There’s a method of explaining fatigue that virtually all MSers have heard of called spoon theory where you start the day with a handful of spoons and each time you do an activity you give away a number of spoons equivalent to how difficult the activity is for you. Getting out of bed and getting dressed can equal a spoon or two for some people, and a day at work can use up the day’s supply for others.
I like to think of it as like charging a phone. You start the day with 100% and this starts draining as soon as you open your eyes. Whatever you do then uses battery life. Some apps (activities) drain your battery more quickly than others, so you need to find a charger, preferably a fast one so you can take some photos and post them on Instagram later. The faster chargers for me were often found in shady quiet coffee shops and involved an iced latte or similar, and I’d just like to say a big thank you to Mrs Dave and my two teenagers for silently recognising when I was flagging and allowing me some pockets of time and space to recharge the battery from 1% to 20% before carrying on.
I averaged about 11,000 steps a day according to the reasonably accurate pedometer on my phone, maxing it at 23,000 steps on the Brandy Melville day. Pretty good going which I put down to the fampridine.
And that’s it!
I hope it was useful and/or interesting, and… have a nice day!
* SY PCH