Advice on having to up my game

[SpiritedHaunts]

I have been dealing with a whole host of troubling health for over ten years now. I started having trouble walking without a cane that then moved on to acquiring a Hugo rollator. I am now not able to stand for any real duration and my Mom has been taking care of me.

We cannot even remember how long ago we have gone anywhere non medical. We were actually in the middle of my PT, for my back before the therapist focused on my severe dystonia in my ankles, when my Mom passed out and it was off to the ER. I had my rollator but we think that the hospital thought it was hers. Making it impossible for me to get a soda, a glance in my direction or anything.

Now Mom mostly pushes me in my rollator, which is not its ideal or recommended use, but seems to be my only way to go anywhere. We have found a combination rollator and transport chair from the same company, but can only find them for sale in Canada.

I basically cannot stand or walk, I can only hobble on barbie feet, and we are trying to figure out how to get the 2 in one version or if we need to move on to a different device. Like one of those totally safe looking zinger devices. I am mostly up late and find the channels with all the weird ads.

We are hitting the 10 year mark by reassessing what is going on now and what we need to do or get to make life easier.

So, any advice on any devices or, as we call them kits, that we can make so I can assuage my totally justified fear of falling again on the bathroom tile when I just need to wash my hands or hair or teeth?

I will be seeing one of my neurologist next week and will certainly talk to her about the medical issues. Yet, any information on catalogs that might be useful or items that work for you would be most appreciated. And so would be items, places, or brands to avoid.

Thanks.

 

[mamabunny]

I’m very sorry. It took me more than 30 years (and sooooo many dr visits) to get an accurate diagnosis, so I understand your frustration.

First of all, please know that if you are experiencing any trouble with your hands or arms, the Zinger will not be a good device for you. That same company (Journey) makes a chair called the Zoomer that is essentially identical, except it has a standard power-chair style joystick. I have used a Zoomer off and on at WDW for several years now, and have been quite happy with it. I have, in fact, used mine so much on that it is currently on my husband’s workbench for a complete overhaul at the moment, with new bearings and wheels on the agenda.

Also, although I know they are sold, the 2-in-one devices can be dangerous; they tend to have smaller wheels, a rougher ride, and can be “tippy”. Since it sounds like staying up off the floor is a current life goal for you, we should probably think about something else.

I am going to focus on the physical aspect of mobility, primarily because it is difficult when we talk about what keeps us going, or what gives us the ability to “get up and go” every day. That varies wildly from person to person, and what works for me may not be even on the map for you. I will say that someone who I believe to be a wise and thoughtful person once said that we sometimes need to grieve the loss of our mobility, and the life we thought we would live. That might mean you need to seek out a counselor or other mental health professional. We must care for the whole person for the person to be whole, right?

Does your Mom need a device also? If the Rollator works for both of you, you could check to see if there are any local organizations that have a DME lending closet; often churches and senior centers, local councils on aging, etc. can help if budget is a concern. These kinds of places may have everything from crutches to power chairs; their inventory will vary (often day to day), and you may have to be persistent to find what you need if insurance and/or personal financing is not an option.

What does your medical team (including your PT) think would be a good device for you to use? Have you talked about your needs and options with your doctor(s)? Obviously they know you condition far better than we do here.

The main thing I would encourage you to look for is something that is (obviously) light and comfortable for ease of use and transport. Think about what you do every day, and what tasks you seek to accomplish; if you are at home more than out and about, you may want a lightweight manual chair or a rollator, which is more likely to fit through most home hallways and doors. If you need something to get to/from work, and do shopping and sightseeing, that might be a powered personal mobility device of some kind. Some people have devices for inside their home, and a separate device for work. What works for one person might be totally inappropriate for another, hence the need to identify what is needed for you.

I know that finding the right solutions to make your life easier can feel overwhelming. You may have to be your own advocate, and I encourage you to take the time to think through what would be not only practical but would give you the most freedom overall. The right personal mobility device can be life-changing. The wrong one can be a (literal) disaster, and leave you more discouraged than ever.

The last bit of advice I will leave you with is this: If you have the ability at all, try before you buy with *any* mobility device you are considering. Wheelchairs, scooters, rollators - they are all very personal to the one who uses them; they become a part of you in a very real way. I made a very spectacular mistake one time buying a device without trying it first, and I will never make that mistake again. Unless your condition is temporary, don’t buy without trying it in person first. Major cities will have multiple vendors where you can go see different models of chairs, ECVs and other devices; even smaller cities will typically have at least 1 or 2 vendors you can visit.

Good luck.

 

[SpiritedHaunts]

Thanks for responding. The internet as now eaten three of my replies. I guess that means they were too long.

Right now for me to go anywhere takes several hours to slowly get ready to shuffle out the door and into the rollator that gets pushed by Mom and I am in pain holding my legs up because I do not want both of us to fall together. My grandmother just turned 97 and is in a wheelchair by choice and keeps offering mom both of her rollators. My rollator has a big soft back while hers have just a metal bar with metal baskets that has to be taken out. Before the pandemic I had been stopped by multiple people while using the rollator about how comfortable it looks. Even had some pictures taken of it. So far doctor wise we have done retesting and actually got a diagnosis that had the word disease attached. Before now it has always been syndrome and disorder. I would just like to know where I stand or sit right now so I can gather together things that can help me if this is the new normal.

When mom has had to go to the ER for unknown reasons (we have so much in common it is like we are related or something)we get the feeling that the staff think the rollator is hers and that I can run go get whatever I need. Once, when she got a room and I could still shuffle behind her her nurse ended up race walking me in a wheelchair down to the exit and mom ran ahead to go get the car.

I have been using store scooters where available for years. Now that I can't even stand unassisted we are revisiting the 10- years of having doctors looking into everything. Hopefully I can find out that there is a magic Little Pill. More than likely I will be told that I do not have X Y or Z which is at least something.

We are trying to figure out if this is how we need to settle into living or if they're can be a change for the better. Having not been in this position before we are looking to find out from those who know if there is a website or catalog that we should look at to find possible kits that can help stay away from the dangerous parts of current life.

We know the lower end brand of electronics from Big Lots and we know the high end brand of electronics from Target. Here we are out of our depth and knowledge on what to avoid and what to look for.

Any advice on where to head would be most appreciated.

 

[mamabunny]

Brand names for DME (durable medical equipment) that you can find on Amazon, and at lots of other vendors are:
- Drive
- Medline
- Invacare
- Pride
- GoGo
- Jazzy
- Shoprider
- Vive
- Elenker (new-ish but seems to have a good overall reputation on Amazon)

Avoid anything from Amazon - or anywhere else - that has a “weird” spelling of its name, or is suspiciously cheap. You get what you pay for in this space; my best friend very recently tried to save money by buying a cheaper manual chair from Amazon with a “funky” (her word) name. To make a long story short she wound up sending that chair back, and ordering a Medline chair.

As you look around the internet, you will see certain names pop up again and again, and those are the names to keep in mind. Another good place to look is websites like monsterscooterparts.com or spinlife.com, and see what is being sold there. If repairability is important to you, for example, that could drive your final choice in a whole different direction.

If you are having difficulty parsing out what features you might want or need, a good way to start is to find one device that you think has everything you want, and then look at other devices in that same category to see what features they have in common, and what features are different. One thing I learned early on was that often “features” are stuff I just don’t need; Some of my most favorite devices are the “odd ducks” - they are the ones that often have fewer or different features than another device in the same category. But they are right for *me*.

Currently, in my “stable” I have the following devices:

- 3 TravelScoots (1 first gen belt drive, 1 second gen hub drive & 1 third gen)
- 2 Drive Nitro Rollators
- 1 Fold & Go power chair
- 1 Whill C2 chair
- 1 City 2 Plus by Travel Buggy
- 1 Zoomer power chair

Each of them is very different, and while I don’t use them all in the course of a day, they all have value to me.

No one can tell you what you should or need to buy; that is up to you to figure out. When I was looking for my devices, I always prioritized weight and portability as factors because I travel so much. For many, many years I used nothing but my TravelScoots; they were more than sufficient. As my condition changed, I added other devices that met specific needs, like all day use at WDW, or comfortable cushioning for zero-spoon days.

I know it’s frustrating and difficult to try and figure all of this out. Personal mobility devices are a category that most of us are completely unfamiliar with until we need one. They quickly become very personal to us, often replacing our legs, and becoming as much a part of our lives, and our families as we are. Shoot, I name all of mine! And while we joke about it in my family, they are just as aware as I am that those devices all have one thing in common: they are augmenting my ability to walk, or outright replacing my legs and restoring full mobility and independence to me.

If you visit WDW regularly, a great thing to do might be to try renting different models of scooters from a reputable vendor (Gold is very popular around here) to see what you like. Gold sells their used scooters at a discount after they refurbish them; we have at least one member here who has purchased a scooter from them and is happy.

Last but certainly not least, here are the most common mobility devices you will see mentioned around here. All of them can be “accessorized” after purchase, so don’t worry about that when buying. IMPORTANT: pay attention to the device’s stated weight capacity; overloading a personal mobility device can result in serious injury.

- Walkers. Simple, u-shaped open frame, usually fold both sides in to be flat. Cheapest ones come with 2 rolling wheels (usually the back) and “skis” or tennis balls on the other 2 corners.
- Rollators. Like a Walker, but with a seat, and typically storage. Handbrakes to help steady the user especially going downhill.
- Scooters/ECVs. These come in many “flavors”, from ultra-lights (like the TravelScoot) to giant scooters so big that they are not allowed on the DIsney buses. Considerations here will likely include things like turning radius, battery life, and weight of the heaviest part when disassembled. Battery life can vary depending on battery chemistry; battery size can be a determining factor if the device is allowed to fly on domestic airlines.
- Manual chairs. Sometimes also referred to as “self-propelled” chairs. Weight can be a factor if you have to lift it into a car, as most of them fold into a giant rectangle. Higher-end models will have removable back wheels, and ultra-light frames, and are “fitted” to the user to be custom, and as comfortable as possible.
- Power chairs. Another wide range; very cheap chairs often have poor quality materials, workmanship or both, even though they will look like an exact duplicate of a more expensive chair. Some people have strong joystick preferences. Considerations include: turning radius, battery life, and weight of the heaviest part. Some newer styles now have removable back wheels & hub motors to make the frame lighter to load/unload (City 2 by TravelBuggy is an example of this). The vast majority of these will have lithium-ion batteries; check battery size to insure the device will be eligible to fly. High end power chairs are typically “fitted” to the user in both size and functionality; these devices can weight more than an average human, and cost as much as a car.

Both ECVs and power chairs should come with battery(s) and charger. Power chairs should have a joystick. Seems obvious, but just a reminder.

Oh, and in electronics accessories (like cables, power packs and chargers) Anker & Eufy are both very good; Anker is being sold by Apple in their stores, and is readily available at Best Buy, Target and Amazon, and Eufy (their sister company) is all about home automation and security. Can personally recommend both.

Good luck

 

[SpiritedHaunts]

Thanks again. Tomorrow I am seeing my main neurologist and hope to find out if the dystonia can be worked around or if we are now free to search for what I will need to have to be able to at least get farther in the house. Unfortunately, the kitchen is all the way across the house so in the good column needing mom to bring and take is hopefully keeping her mobile.

I have half done projects that I started back when I could get on the floor and back up that are bothering me. So I just play a game with myself that there must be a special chair or other item that I can use to change the height and allow me to go down close to the floor and then go up to a point where I can get up from. It may exist or not, much like Schrodinger's cat. But just the thought of it possibly existing helps my mind stop thinking about problems at 4am.

 

[elaine amj]

That must be so frustrating! My DH battled cancer for 7 years and in his last year, we dealt with ever-increasing debilitating mobility issues. I spent so much time dreaming up what devices would help with whatever our current challenge was. Bought sooo many assistive devices to help make his life easier. Many worked, some didn’t. But it was all worth it.

We decided to focus on living life to the fullest. So even when he couldn’t walk, talk, or see, we’d take him on all kinds of adventures, including to musicals (he could listen and bop along) and many restaurants (he was on a feeding tube but liked hearing our reviews of the food). He lived his life with so much joy. I remember how much effort it took to leave the house - sometimes just to go see a local fireworks show. It was exhausting but it was so worth it.

Anyway, back to devices.

We found our Drive rollator with soft curved back super comfortable and we also used it as a wheelchair all over Disney. Not the prescribed use - but so lightweight, maneuverable, and easy to load in the vehicle. BUT - annoying over door thresholds and could be tippy if the pusher is not very attentive. (i.e. I always had full control when pushing DH but he was more careless and once tipped me over when I was taking a ride to rest my sore feet lol). The wheels are also smaller so it was more work to push.

We eventually had to upgrade to a custom manual wheelchair. His PT recommended a giant beast of a tilting wheelchair. But I would NEVER have been able to take him anywhere without a strong man along as there was not a chance I could lift it into the van.

So I paid extra for a Liberty lightweight gravity tilt manual (DH had limited vision so had to nix a power wheelchair). It was great as I could lift it. If needed, I could dismantle the wheels and the back to make it even lighter.

Sadly he only managed to use it 2 weeks before he passed. So now I have to sell it but don’t see much of a market for this style of chair. Most I see online are all power chairs.

I wish you the best as you try to figure out what you need. Hopefully your vendor can lend you a trial wheelchair so you can see if you like it. Mine lent us one that we ended up using for 2 months because we kept having delays in our order.

 

[mamabunny]

Thanks again. Tomorrow I am seeing my main neurologist and hope to find out if the dystonia can be worked around or if we are now free to search for what I will need to have to be able to at least get farther in the house. Unfortunately, the kitchen is all the way across the house so in the good column needing mom to bring and take is hopefully keeping her mobile.

I have half done projects that I started back when I could get on the floor and back up that are bothering me. So I just play a game with myself that there must be a special chair or other item that I can use to change the height and allow me to go down close to the floor and then go up to a point where I can get up from. It may exist or not, much like Schrodinger's cat. But just the thought of it possibly existing helps my mind stop thinking about problems at 4am.

You can purchase a bath lift - most of them are lightweight (approx 25 pounds or so) and they are battery-operated, and (because, bath) water-safe. While they are meant for the bath, I do know several people who keep one in their homes to use to get on and off the floor safely.
Here is an example of one from Amazon.

Good luck with the neurology apppointment.

 

[SpiritedHaunts]

Thank all for advice and help. So sorry for everyone's losses. I am currently looking for suggestions on keywords that can help me find items that can help me get things done.

I really need a place to sit that helps me not sit to low that I cannot get up from and one that lets me reach low to retrieve items from the floor. Too many projects were left in progress when I was put on bed rest.

I found this one on amazon
https://www.amazon.com/gp/product/B0CP4VL7P5/ref=ox_sc_act_title_6?smid=A16SGE93DV436X&th=1
and would appreciate any advice on the item or any other search keywords that you may know that I do not.

Basically, I cannot stand or walk due to dystonia and back issues, hence the chair problem, and a host of other issues that I can handle with little to no other help.

Once again any help in brands to invest in or stay away from, sites, suggestions, and key search words are much appreciated.

Thanks for your advice/assistance/guidance and now I guess I will be needing mamabunny's address so her husband can do some overhauling on some items I have.

 

[mamabunny]

Thank all for advice and help. So sorry for everyone's losses. I am currently looking for suggestions on keywords that can help me find items that can help me get things done.

I really need a place to sit that helps me not sit to low that I cannot get up from and one that lets me reach low to retrieve items from the floor. Too many projects were left in progress when I was put on bed rest.

I found this one on amazon
https://www.amazon.com/gp/product/B0CP4VL7P5/ref=ox_sc_act_title_6?smid=A16SGE93DV436X&th=1
and would appreciate any advice on the item or any other search keywords that you may know that I do not.

Basically, I cannot stand or walk due to dystonia and back issues, hence the chair problem, and a host of other issues that I can handle with little to no other help.

Once again any help in brands to invest in or stay away from, sites, suggestions, and key search words are much appreciated.

Thanks for your advice/assistance/guidance and now I guess I will be needing mamabunny's address so her husband can do some overhauling on some items I have.

That bath lift looks pretty much like all the others. One thing I have found helpful on Amazon especially is to really take a hard look at reviews. If says it is a “Vine review” that means they got the product for free, so you might need to take that with a boulder-sized grain of salt. Also, check back a ways to make sure that all of the reviews are for the actual item being sold. This is a problem more and more frequently. And one of the other things I do is to focus on the distribution of 1, 2, 3, 4 & 5 star reviews. If everything else looks OK in the reviews, then see how the reviews fall; generally speaking anything about a 4.5 average - and/or with a total % of 4 and 5 star reviews at 85% or better gives you the best chance.

Many sites are fine to buy from, but if you are on a budget, stick close to Amazon, Wal-Mart and Target; they tend to have the best price and the best return policies. Sites like AECcorner have reviews and recommendations and practical advice as well. I often read reviews or comments, and then learn about other pieces of equipment or procedures from a comment someone left!

And search terms are somewhat subjective; when it comes to Amazon, their algorithm is set up to search the entire product listing and even reviews. So, if you are searching for a particular model number, or something really esoteric (like a mauve and chartreuse flibberdeegibbit) just use the words that are most important to you. And you can always search for things using Google (another deep-diving algorithm) and then when you find something promising, search for it on Amazon, and see what all comes up. It can be a bit of work, but it’s worth it when you find the *exact* thing you have been looking for!

LOL my hubby’s workbench is constantly full of things for our entire family; he hasn’t seen it empty in years and years!