A serious question about wheelchairs

[PeterPan]

So my dad has a lesion on his spine that has been doing its thing for a year and a half or more. He has enough pain that today they gave him a wheelchair and ran fresh MRIs to see if anything can be done. Maybe something can be done, but I just wanna start learning here. Say (within reason, not frivolously) budget was not an option. Like I don't know, he could do $10k, and that should get him anything, right? What chair would he want?

-he lives in assisted living, so his residence is already friendly to wheels for doors, showers, elevators, etc.

-he has the use of his hands and cognitive functions. It's only his lower back currently that is affected, but it's making it hard to stand or walk.

-he has the option of assistance with bathing and the spare from the hospital, so it can be more comfortable and transfer for messy things

-height=6'4", clothing = 2XLT (tall) So not a small man. Under 300 pounds, my guess 250 or 280, mostly in his middle. So not a lightweight/slim chair, that's for sure. A regular chair rated for 350 will work without a problem, because that's what his scooter was. He doesn't require the plus size scooters. Hold it, would a scooter be better than a wheelchair??

-he is finding it uncomfortable to transfer to his recliner. I'm sure they could assist him, and it seems like he'd be more comfortable in the recliner. But what do I know. Should we switch his recliner to a lift? They had told us not to do that two years ago when we bought it, saying it was better that he keep standing while he could. Well now he's in more pain. Would a lift chair make it easier to get into the wheelchair (and from wheels to recliner)? 

-he likes to do things like letter writing or using a small tablet, so maybe a flip down tray? Are there snazzy attachments like this? Maybe cupholders or I don't know?

-he's NOT an excellent driver. He'll go fast then slow and just generally be a little unreliable. Of course that was on a scooter when I took him to Disney. I suppose the controls on a snazzy wheelchair are smoother. Fast enough to be fun but not likely to kill grannies?

So bring me up to speed. Is there a brand or where I look for this? Honestly, I assume the lesion on his spine will kill him and I don't know when. He might as well have some ferrari awesome wheels and enjoy them. So where do I look for this? Maybe not quite as hip as in The Upside, but close. It sucks and we're just gonna pretend it doesn't suck. 

 

Edited February 6, 2021 by PeterPan

[prairiewindmomma]

So, our medical insurance covered her wheelchair. She was sent to a mobility clinic and was fitted for a chair. It’s a whole subspecialty. She ended up with a specialized gel seat, a chair she could hang oxygen and an iv pole from, etc. It was highly customable to her needs and flexibile to adapt as things changed. 
 

I would ask for a referral to a mobility clinic for a fitting.

Also, this is on Medicare part B https://www.healthline.com/health/medicare/does-medicare-pay-for-wheelchairs#when-they-are-covered

I think they have a 45 day rule? I’d ask and get working on that...

 

[PeterPan]

How do I sort through wheel drives? What do you prefer? https://www.improveability.com/wheelchair-vs-scooter-whats-the-difference/  I'm reading this article, and the mid-wheel seem touchy, which would be awkward for him. He can have some tardive dyskinesia, etc. And a scooter is not practical in his apartment at all. It solves going to meals but not in his apartment.

I guess the wild card is where this is going. Since I assume his back is going to continue to get worse, there's no benefit to buying something that doesn't change with him. And I don't think a scooter would be comfortable at all to him right now.

 

[PeterPan]

3 minutes ago, prairiewindmomma said:

So, our medical insurance covered her wheelchair. She was sent to a mobility clinic and was fitted for a chair. It’s a whole subspecialty. She ended up with a specialized gel seat, a chair she could hang oxygen and an iv pole from, etc. It was highly customable to her needs and flexibile to adapt as things changed. 
 

I would ask for a referral to a mobility clinic for a fitting.

Also, this is on Medicare part B https://www.healthline.com/health/medicare/does-medicare-pay-for-wheelchairs#when-they-are-covered

I think they have a 45 day rule? I’d ask and get working on that...

 

Ok, you just got me further than I was, thanks! So could there be a gap between what Medicare and the VA are willing to pay for and what I want? Haha, what he wants. I'm just saying I want him to have something nice. But that makes sense that there is a referral, a clinic, etc. He is doing this through the VA and so far they've been good. Something about they're conferring with the surgeons and sorting out what can be done. So I guess if nothing can be done (which was the issue before but may or may not be the issue now), then they'll do that referral. I'll talk with him and put that bug in his ear. 

I'll google that 45 day rule thing, dunno. He's been declining with this for a while but it has gotten really bad, to the point where he went to the hospital and told them they HAD to see him and do something.

Well thanks. I thought I would have to find a vendor and make something happen. But if it's going to be a referral and a clinic, then that makes it easier for me. He's already set up to use the disability transportation in his city, so he's totally proficient at that. Small miracles.

[PeterPan]

Ok, I'm reading about this, and it's saying the PCP decides whether you qualify for power or manual wheelchair. They already gave him a manual wheelchair. Are there arguments for a power chair? He "can" wheel himself in theory, but isn't that hard on his arms or unpleasant? Are there circumstances under which the PCP says it's fine and I say no get a power chair? Am I biased in assuming a power chair would be better? 

[kbutton]

A relative of mine has a scooter whose seat can raise and lower a person so that they can reach higher items or be a considerably more face to face compared to when they are seated and speaking to a standing person. Not sure how it works in tight spaces, but this relative lives in a really small, tight home. It looks more like a fancy wheelchair than a scooter.

[prairiewindmomma]

Keep in mind that with manual chairs it is super easy to lose strength. If he can get about with a manual chair and uses it, I would keep it. I am serious.

Power chairs are nice, but they are heavy, limit where you can go, and you have to deal with batteries and charging. 
 

All of these questions should be addressed by how he accesses his daily living activities. Can he go the places he needs to go? Is he feeling limited by his current setup?

[PeterPan]

https://www.pridemobility.com/jazzy-power-chairs/jazzy-614-hd/  This comes in blue, has shock absorbers for varied terrain, and goes up to 450 pounds. I can't imagine it's what Medicare would be willing to pay for, lol, but it would still let him get out and have a lot of fun! He could fly, take a trip to Florida, go see the gators, go to St. Augustine, drive out on a pier and fish, whatever. Right?

I think I need to call a vendor for these machines and see how that works. They'll know if he needs to jump through the PCP hoop for this or if it's not worth it or how that will work. 

[PeterPan]

7 minutes ago, kbutton said:

whose seat can raise and lower a person

Ooo, that was one of the features on the Pride Mobility site! 

[PeterPan]

2 minutes ago, prairiewindmomma said:

Keep in mind that with manual chairs it is super easy to lose strength. If he can get about with a manual chair and uses it, I would keep it. I am serious.

Power chairs are nice, but they are heavy, limit where you can go, and you have to deal with batteries and charging. 
 

All of these questions should be addressed by how he accesses his daily living activities. Can he go the places he needs to go? Is he feeling limited by his current setup?

Ok, sigh. If sticking with manual is best, I guess that's how it will be. I don't think he can bust out of his AL for another month or two anyway. We're waiting to hear what the new rules will be as the residents get fully vaccinated. 

He's pretty smart but I guess the charging would be a catch 22. Sometimes he forgets things or forgets how they work. He really forgets how they work. So you're right, the manual chair would always work. 

Access is going to get really ugly really fast. He hasn't seen his siblings in close to a year, and now it won't be easy to do that. With either type of wheels it will be harder, but you're right with the power it's a LOT harder. Hadn't thought through that. Sigh. I guess mainly I just wanted to get him the best. But if manual is best/better, I guess it is. 

[PeterPan]

6 minutes ago, prairiewindmomma said:

Is he feeling limited by his current setup?

I guess we'll have to see. He's saying he's going to have the concierge bring up his mail. Doesn't make sense to me in the sense that he could get in his manual chair and go get the mail. I think he has logistic issues to see how this works out and what is working and what isn't. And it's fluid. I had just seen him before Christmas and he was walking well in and out of the building, taking up the Christmas tree I brought him. And now he's in a chair, sigh.

[prairiewindmomma]

Remind me, said lesion is of a demylenation variety or is a solid mass? Stable in size? No leptomeningeal spread? 
 

Like, I would know info that going into this also...may be a good reason for a motorchair.

My ideal is to have both, fwiw...a travel chair and a motor chair.

[Ottakee]

I agree with a mobility clinic.  They are the experts.  I work in special education and have had over 100 kids in chairs....of all types.

There is even an assisted manual one where there is extra power to help move it....kinda like electric bike idea.

A power chair for most things and a manual for going places might be great.   A power chair would require a handicapped van or bus to transport and flying with one is tough as they have to take it apart.

A good mobility clinic....ours is at the rehabilitation hospital 45 minutes away....is priceless as they know what options are available, how to word things to qualify for insurance, etc.

[Ottakee]

Oh, and yes, look into a lift recliner.  Makes transfers so much easier.

[Drama Llama]

19 minutes ago, PeterPan said:

Ok, sigh. If sticking with manual is best, I guess that's how it will be. I don't think he can bust out of his AL for another month or two anyway. We're waiting to hear what the new rules will be as the residents get fully vaccinated. 

He's pretty smart but I guess the charging would be a catch 22. Sometimes he forgets things or forgets how they work. He really forgets how they work. So you're right, the manual chair would always work. 

Access is going to get really ugly really fast. He hasn't seen his siblings in close to a year, and now it won't be easy to do that. With either type of wheels it will be harder, but you're right with the power it's a LOT harder. Hadn't thought through that. Sigh. I guess mainly I just wanted to get him the best. But if manual is best/better, I guess it is. 

You might want to look at "power assist" wheelchairs, which are kind of halfway between power chairs and manual chairs.  Basically, they are detachable power.  My son had a chair with power assist wheels that worked like a manual chair, but he didn't have to push as hard.  I have a friend whose daughter has a power assist chair that drives like a power chair with a joy stick, but doesn't have other power features like power recline or power tilt.  

One to ask is about whether long term he'll need features like recline and tilt in space.  My son's power chair had tilt in space, and the ability to lower the seat to the floor (a feature that makes more sense for kids), but not recline, and over time, he really needed recline.  

Honestly, I wouldn't start with a vendor.  I'd start with a mobility clinic, like @prairiewindmomma suggests.  

[PeterPan]

33 minutes ago, prairiewindmomma said:

Remind me, said lesion is of a demylenation variety or is a solid mass? Stable in size? No leptomeningeal spread? 
 

Like, I would know info that going into this also...may be a good reason for a motorchair.

My ideal is to have both, fwiw...a travel chair and a motor chair.

So technically I have access to all his medical, including his online account, and I just don't look at this. I know that sounds bad, but it's sort of my head in the sand, pretend like nothing is happening method of dealing with it. I don't know the answer. I know it was considered inoperable last time they did an MRI. I know thanks to the policies that he has been cooped up and that during this time his pain and discomfort have increased. I know the neurosurgeon had scheduled to redo the MRI every 6 months, which probably tells you something about trajectory.

That makes sense to have a split plan. 

Ok, just to go back to this, no I don't think it's pretty. He originally described it to me as a tumor. I'm sure it's bad and it's progressive. But he said they think what's going on now involves a bulge of some kind, meaning there might be hope to fix it. 

25 minutes ago, Ottakee said:

flying with one is tough as they have to take it apart.

I hadn't thought through that, but I'll check, thanks!

25 minutes ago, Ottakee said:

A good mobility clinic....ours is at the rehabilitation hospital

Yup, my guess is the VA has everything right there. It's the biggest hospital in his state, better than what I could get (in one location) in our state. It's why he lives there, not near me, sigh. 

25 minutes ago, Ottakee said:

Oh, and yes, look into a lift recliner.  Makes transfers so much easier.

Ok, that's a solvable problem. My dh had said that's what we should buy two years ago and I was like oh no that's not necessary. Foo, foo, foo.

21 minutes ago, BaseballandHockey said:

he really needed recline.  

Yeah, I could see him wanting that.

21 minutes ago, BaseballandHockey said:

I wouldn't start with a vendor.  I'd start with a mobility clinic,

Thanks for the tips!!! We'll see how it goes Monday and I'll talk stuff through with him. Thanks ladies!!!

Edited February 6, 2021 by PeterPan

[matrips]

My mom could easily charge her power chair once she got the hang of it.  It’s not hard. Also, any assisted living helper that comes in could check on it as well.  The charging port for hers was in the armrest.  If she could do it, your dad could.  
 

Also, to qualify with Medicare for a power chair, he has to have his doctor say that he needs it to get around his apartment.  If he can walk in his apartment, and just needs it to go down the hall, they will not cover that.  So all in the wording.

It gave my mom such freedom. I wish she had one earlier.  But it sounds like your dad had a scooter which is good.

They can adjust the speed.  Hers went too fast for her so they did something to slow it down.

she just had whatever model the mobility guy gave her.  We didn’t even know there were other options.

 

[PeterPan]

2 minutes ago, matrips said:

Also, to qualify with Medicare for a power chair, he has to have his doctor say that he needs it to get around his apartment.  If he can walk in his apartment, and just needs it to go down the hall, they will not cover that.  So all in the wording.

Ok, that's helpful. That makes sense too. I think it will become obvious with time. 

Yeah, the scooter was rented for a trip to Disney a couple years ago. Previously he could walk but he got to where it was too hard/fatiguing to walk that long. It's just change with time, sigh.

4 minutes ago, matrips said:

They can adjust the speed.  Hers went too fast for her so they did something to slow it down.

Oh that's smart!!! I hadn't thought of that, but you're right that would solve everything. Just put it in turtle mode so it can't go over a sane number.

 

[TravelingChris]

1 hour ago, kbutton said:

A relative of mine has a scooter whose seat can raise and lower a person so that they can reach higher items or be a considerably more face to face compared to when they are seated and speaking to a standing person. Not sure how it works in tight spaces, but this relative lives in a really small, tight home. It looks more like a fancy wheelchair than a scooter.

Oh can you find out more about this,?  It would be for me.  2020 was a very bad year for my walking ability declining.  Just today, I almost fell 4 times- likely due to neuropathy that is getting worse. And also, we were measuring our door width because I am buying a new desk that has a very wide area for my chair and do I can have a foot rest, etc,.. The door width is only 29 inches.  Now I know I did use a wheelchair on this house after I had pneumonia, but it couldn't go into all rooms.

[kbutton]

13 minutes ago, TravelingChris said:

Oh can you find out more about this,?  It would be for me.  2020 was a very bad year for my walking ability declining.  Just today, I almost fell 4 times- likely due to neuropathy that is getting worse. And also, we were measuring our door width because I am buying a new desk that has a very wide area for my chair and do I can have a foot rest, etc,.. The door width is only 29 inches.  Now I know I did use a wheelchair on this house after I had pneumonia, but it couldn't go into all rooms.

Do you want to know how it functions in a small house and then maybe model/size? I can ask some questions. If you don’t hear from me in a couple of days, shoot me a message. It’s too late for me to text the right people tonight, and I don’t want to forget.

[BlsdMama]

I had help picking everything out! You really want someone there because by lesson, do I assume he has MS? If so, you want to get something that has his future needs, not just his current needs. A medical professional like your doctors office is the best to recommend a person to understand his future needs. 
 

You don’t want to “waste” insurance benefits on the wrong chair. For example my travel/transfer chair? $200.  My “real” chair that is my power chair? Just over $62,000!!! 😳 Granted, it’s pretty, but I should have gotten XM radio and a snow plow package with it. 
 

But, in all seriousness, medical insurance generally cover a chair every five years. Imagine if we had used our benefits on my first chair rather than my power chair!! Really understand his future needs and try to go from there back. We didn’t pay a penny for my chair - we had already hit our maximum out of pocket. 

[BlsdMama]

9 hours ago, TravelingChris said:

Oh can you find out more about this,?  It would be for me.  2020 was a very bad year for my walking ability declining.  Just today, I almost fell 4 times- likely due to neuropathy that is getting worse. And also, we were measuring our door width because I am buying a new desk that has a very wide area for my chair and do I can have a foot rest, etc,.. The door width is only 29 inches.  Now I know I did use a wheelchair on this house after I had pneumonia, but it couldn't go into all rooms.

Chris, the raise/lower function is called elevate. If a chair has an elevated function, it can do this. Tilt/recliner is the other handy one. They’re really meant to help caregivers with transfers to beds, etc., but they sure are handy functions!  
 

I had to have a diagnosis and the doctor has to write the insurance an explanation of need - why I would need each bell and whistle. 
 

ETA: I see you’re worried about door width. It’s a legit concern. The question becomes where will your disease take you in 5 years? Because if it’s wheelchair bound, widening a doorway isn’t terribly hard if you have a handy family member. We’ve done a few here. Hallways are more complicated. 

Edited February 6, 2021 by BlsdMama

[BlsdMama]

A lot of power chair have speed control. I have an indoor mode and a normal/outdoor mode, and then levels of speed in between. It’s handy to not take out walls in your house... not kidding. 🤷‍♀️ 

[BlsdMama]

11 hours ago, Ottakee said:

Oh, and yes, look into a lift recliner.  Makes transfers so much easier.

Golden Technologies is where to look for a lift recliner. They’re also easy to find used. 
 

My chair is Permobil. 
 

Honestly, manual is not ideal for old people. They lack strength in their arms and transfers are difficult. In a manual chair, you need strength to pull to a stand and they are terribly uncomfortable. I can’t get out of my manual. The manual is great for what it is - it folds up, it travels in a vehicle, I can take it anywhere to any house. It’s NOT okay for something for me to BE in long term. I have an air cushion for my bottom and gel for my bottom and arms. 
 

So, it’sa nightmare for taking places, like people’s homes. I can’t. They don’t have ramps, wide doorways, etc., but tbh, but the time you need a power chair, going to someone’s home is dicey... like, can he get up from the potty without help. (Lift from the legs and feet can be terribly difficult.)

He can still see them - meetings at parks, eventually (Covid safe) public places that are ADA. Wheelchair come with a lot of difficulty, but usually, by the time someone needs one, their ability to go places without ramps, railings, ADA bathrooms, etc., is already risky for them because of fall risk.  

 

[BlsdMama]

16 minutes ago, BlsdMama said:

Chris, the raise/lower function is called elevate. If a chair has an elevated function, it can do this. Tilt/recliner is the other handy one. They’re really meant to help caregivers with transfers to beds, etc., but they sure are handy functions!  
 

i has to have a diagnosis and the doctor has to write the insurance an explanation of need - why I wold need each bell and whistle. 

10 hours ago, matrips said:

 

It gave my mom such freedom. I wish she had one earlier.  

 

This. It gives you your legs back. ♥️ 

 

Charging is no more complicated than charging my phone. I have a charger. It plugs into the wall and into my chair under the hand control. That’s it. 

[DawnM]

following along as I have just been thinking of getting something for my dad when he moves in here.

[Spy Car]

My one thought--given the existing lesion and his large stature--would be to get an excellent seat cushion, like a top-of-the-line Roho inflatable seat cushion in order to prevent bed sores from developing. And ask about back cushions if his lesion touches in back.

I'm no expert, but I know bedsores are the devil with people in chairs. 

Bill

https://www.healthproductsforyou.com/p-roho-high-profile-single-compartment-cushion.html?utm_source=google&utm_medium=surfaces&utm_campaign=shopping feed&utm_content=free google shopping clicks&gclid=Cj0KCQiAmfmABhCHARIsACwPRADfknVpYXP9wElyY_ApXbP5Dv9DEvdIZ8t5jKzvZje8Lm0vKHqCNO0aAhg0EALw_wcB

[Drama Llama]

4 hours ago, BlsdMama said:

Chris, the raise/lower function is called elevate. If a chair has an elevated function, it can do this. Tilt/recliner is the other handy one. They’re really meant to help caregivers with transfers to beds, etc., but they sure are handy functions!  

Tilt and recline can absolutely help caregivers, but they can also make a big difference for the person using the chair, in that the change how pressure is distributed on various parts of the body, etc . . . 

Given that this is a spinal issue, I'd want a seating specialist involved in the decision.  

[kbutton]

14 hours ago, TravelingChris said:

Oh can you find out more about this,?  It would be for me.  2020 was a very bad year for my walking ability declining.  Just today, I almost fell 4 times- likely due to neuropathy that is getting worse. And also, we were measuring our door width because I am buying a new desk that has a very wide area for my chair and do I can have a foot rest, etc,.. The door width is only 29 inches.  Now I know I did use a wheelchair on this house after I had pneumonia, but it couldn't go into all rooms.

I think BlsdMama is probably giving you better information than I can find out, but let me know if you still want me to ask some questions. 

[KungFuPanda]

There are scooters that look like power wheelchairs to the untrained eye, but they don't have that handlebar thing in the front and drive like a power wheelchair.  They are MUCH less expensive than a power wheelchair.  They are cheaper, lighter, and if you look you can probably find one for free or cheap.  I have one I need to donate but because of the pandemic, none of the loan closets are taking them.  Seriously, you can't give them away and people want them out of their homes.  Ask around.  You never know who has one sitting in Aunt Susie's basement from when grandma needed it.  If you lived in Maryland I'd have you come and get it.  You'd only need to buy a new battery and the battery place is two miles from my house. 

DS's wheelchair was covered by insurance and they had a whole clinic appointment set up for choosing features and ordering the chair.  For mechanical reasons I don't remember, we had to choose either a chair that lifted to counter height OR a chair that reclined.  We chose the recline feature.  DS's chair also has "Spider Drive" which means he can climb up or down a small curb when necessary.  It has been necessary more times than is optimal.  The drawback to scooters and power wheelchairs is that you need a vehicle that can transport them.  You can get around it by using  manual chair when you're out.

A third option is power assist wheels.  The wheelchair looks like a manual chair, but has wheels that do some of the work; kind of like a power assist lawnmower.  This would have to be prescribed by the doctor.  

As for the desk, attachments on the chair can be a bit annoying.  We have a desk we don't use and a cup holder in the box.  DS's favorite is just to wheel up to a table.  He has this desk thing that slides over his bed like a bed table/desk, but is on castors so he can always use it as a regular desk in his room during the day.  He moves it himself so it's a pretty smooth glide.  I did replace the castors that came with it with home depot ones because the originals had brakes and kept locking themselves.  

Hope this helps

[PeterPan]

7 hours ago, BlsdMama said:

by lesson, do I assume he has MS?

That is a really good question. When he first told me about two years ago, he described it as a tumor. I really don't know. Like I want to hide in the sand don't want to know. I clearly can't stop it and whatever it is it's making it more painful to be mobile.

7 hours ago, BlsdMama said:

 My “real” chair that is my power chair? Just over $62,000!!! 😳

Oh my. Ok, then I will get serious about this and start asking the hard questions. (see me holding my head) There are not enough days on the beach to solve this. It sucks.

7 hours ago, BlsdMama said:

But, in all seriousness, medical insurance generally cover a chair every five years. Imagine if we had used our benefits on my first chair rather than my power chair!! Really understand his future needs and try to go from there back. We didn’t pay a penny for my chair - we had already hit our maximum out of pocket.

Ok, now I understand. I don't like it, but I understand. Thank you for explaining. And you know I had so assumed it was a tumor, I wasn't thinking in terms of MS. He signed the paperwork so technically these docs can all talk with me. I will pull up my big girl panties and get it done. I may need to like give myself a good dinner or a shopping trip or something to make it better.

Was I reading your posts about pans and buying new pans? I finally got some and like them.  They're Demeyere, so shiny. So I think about the crab in Moana singing the SHINY song. 

 

 

[PeterPan]

7 hours ago, BlsdMama said:

Honestly, manual is not ideal for old people. They lack strength in their arms and transfers are difficult.

Yeah, I think that's what my gut was saying. He's 70.

7 hours ago, BlsdMama said:

Golden Technologies is where to look for a lift recliner.

Good tip! I'll look. 

7 hours ago, BlsdMama said:

Charging is no more complicated than charging my phone. I have a charger. It plugs into the wall and into my chair under the hand control. That’s it. 

It would be a little tricky for him, but he could make it happen. 

2 hours ago, BaseballandHockey said:

seating specialist

Where did you find this person?

1 hour ago, KungFuPanda said:

DS's favorite is just to wheel up to a table. 

That's such a good point! He has (don't laugh) a card table as his desk/work space in his apartment. I can see if that still works as things pan out or could trade it for something different. He really likes to be able to file and go through paperwork. It's kind of a thing for him. 

 

1 hour ago, KungFuPanda said:

desk thing that slides over his bed like a bed table/desk,

What a smart idea!

Well good. I'm going to try to pull up his medical stuff and see what I find out. I think y'all are right that it's time to pull my head out of the Disney mermaid singing whatever sand and know if I'm going to give him good guidance.

Thanks!!

[PeterPan]

So I went through his files, and the newest records are not complete/uploaded yet. I saw mention of the lesions and back pain, but it's not showing up as a diagnosis in the running list of hot button issues they tag files with. So that's a little odd. I'll just have to see what the files show when they update. It says it can be 36 hours, so that could be next week some time, lol.

On the plus side, I'm VERY impressed with how thorough they are!

Edited February 6, 2021 by PeterPan

[Drama Llama]

50 minutes ago, PeterPan said:

 

Where did you find this person?

 

Ours was in a pediatric rehab hospital, but they also have them at regular hospitals and I believe some are also freestanding.  You want to search for a seating and mobility clinic.

 

[Harriet Vane]

Re a recliner:

Definitely get a power lift recliner. He doesn't have to use the lift feature unless he wants to. But you know he is aging and will continue declining, so there's no reason not to get a power lift. While he's strong, he'll just get up on his own steam. When he's tired out or having some pain flares, he'll be grateful for the lift help. 

[melmichigan]

1 hour ago, PeterPan said:

So I went through his files, and the newest records are not complete/uploaded yet. I saw mention of the lesions and back pain, but it's not showing up as a diagnosis in the running list of hot button issues they tag files with. So that's a little odd. I'll just have to see what the files show when they update. It says it can be 36 hours, so that could be next week some time, lol.

On the plus side, I'm VERY impressed with how thorough they are!

It would be listed under impressions/diagnosis on the MRI report.

[PeterPan]

3 hours ago, melmichigan said:

It would be listed under impressions/diagnosis on the MRI report.

Yup. I think the imaging is just not showing up yet, because it's new and hasn't run the cycle of all the doctors and then had the 36 hours. I'm going to keep checking back. I know I talked with his doc about this 2 years ago after an MRI because I was concerned. The english was so broken, I really couldn't make out much other than being told not to worry. But we'll see. I think they're hoping they can find something to do about it.

[melmichigan]

14 hours ago, PeterPan said:

Yup. I think the imaging is just not showing up yet, because it's new and hasn't run the cycle of all the doctors and then had the 36 hours. I'm going to keep checking back. I know I talked with his doc about this 2 years ago after an MRI because I was concerned. The english was so broken, I really couldn't make out much other than being told not to worry. But we'll see. I think they're hoping they can find something to do about it.

I'm sorry, I meant that there should be a report from the doctor that you couldn't understand.  That way you could compare the old information with the new and see where to go from there.  It may help formulate more questions with regard to where they think he will be in a few years.  I hope things become more clear for you in the upcoming days.

 

[PeterPan]

Well we'll see what they say tomorrow. Now he's saying he hardly slept last night because he was so uncomfortable. And he's using assistance to bathroom. At least he HAS the assistance accessible, that's for sure! 

So I told him we'd see what they can fix and what they can't fix we'll try to make better. Like one of those adjustable bendable beds might help, right? We'll see, one step at a time. But he's so funny. He's like oh that would cost (x amount) and I'm like DAD YOU HAVE IT. 

So one step at a time. Maybe they've got a great solution for some of those. It's just crazy how he seemed fine, like he was slowly declining, and then BOOM. That's a whine. 

For @DawnM could I just say right now I'm REALLY GLAD he's in assisted living, not with me? I have NO CLUE how I'd help him go to the bathroom. Seriously. He's almost twice my weight, very tall. There's no way. And that would just be a JOB. Maybe that's why people are moving their loved ones into assisted living even under these highly restrictive terms? That may be it, that a lot of these people require significant private assistance that the families aren't in a position to give. 

Edited February 8, 2021 by PeterPan

[DawnM]

2 hours ago, PeterPan said:

Well we'll see what they say tomorrow. Now he's saying he hardly slept last night because he was so uncomfortable. And he's using assistance to bathroom. At least he HAS the assistance accessible, that's for sure! 

So I told him we'd see what they can fix and what they can't fix we'll try to make better. Like one of those adjustable bendable beds might help, right? We'll see, one step at a time. But he's so funny. He's like oh that would cost (x amount) and I'm like DAD YOU HAVE IT. 

So one step at a time. Maybe they've got a great solution for some of those. It's just crazy how he seemed fine, like he was slowly declining, and then BOOM. That's a whine. 

For @DawnM could I just say right now I'm REALLY GLAD he's in assisted living, not with me? I have NO CLUE how I'd help him go to the bathroom. Seriously. He's almost twice my weight, very tall. There's no way. And that would just be a JOB. Maybe that's why people are moving their loved ones into assisted living even under these highly restrictive terms? That may be it, that a lot of these people require significant private assistance that the families aren't in a position to give. 

 

Yeah, I don't know how quickly he will go downhill.   But I do feel that moving him here is the right thing for now.   

[BlsdMama]

4 hours ago, PeterPan said:

Well we'll see what they say tomorrow. Now he's saying he hardly slept last night because he was so uncomfortable. And he's using assistance to bathroom. At least he HAS the assistance accessible, that's for sure! 

So I told him we'd see what they can fix and what they can't fix we'll try to make better. Like one of those adjustable bendable beds might help, right? We'll see, one step at a time. But he's so funny. He's like oh that would cost (x amount) and I'm like DAD YOU HAVE IT. 

 

Once they give you a diagnosis, they should be able to help you plan for future needs. Here, we have ALS Clinic. They try to make sure we have equipment to meet needs BEFORE we need it... It prevents accidents. 
 

Knowing what’s wrong is a big piece of what comes next and how to plan. For example, you mentioned a bed. Did you know there are fully electric and semi electric? Semi will adjust heads and foot mattress. But fully electric raises and lowers the entire bed. My insurance actually would cover a bed, but we wold have to rent it for so many months first. So that’s another important piece of this. Medical insurance will often cover at least part of durable medical equipment. 

[PeterPan]

47 minutes ago, BlsdMama said:

Did you know there are fully electric and semi electric? Semi will adjust heads and foot mattress. But fully electric raises and lowers the entire bed.

Ooo, that's smart. 

Thanks for the tips.