Where is Gooserider?

Well, a few updates...

We have been playing with my drugs a bit (under Dr's supervision) Since I didn't seem to be getting much effect from the Fentanyl patches, I tried going to a longer interval before changing them out - and did NOT get good results :-/ Major abdominal spasms that had me up all night, even after putting on a fresh patch, and taking oxycodone (usually knocks me out, so I don't take it as part of my regular pain routine). So I am going to stick with the Fentanyl on the standard three day pattern from here on out, at least until I see the pain Dr. again and he changes it.

The other thing he did was to increase the dose of my Gabapentin / Neurontin. (I hate the way they keep changing the names for the same drug when going between the generic and brand names... :coolmad: ) I was doing 300mg 3x/day, he pushed it to 600mg and told me to play with going between 600 and 900mg, 3x/day - this seems to help with some of the "phantom pains" that I've been having, doesn't knock them out, but keeps them at a more tolerable level most of the time. Last day or two, 700mg seems to have been about right. Downside is I seem to be sleeping a lot more, but at least when I'm awake I seem to be more functional.

There is an acupuncture Dr. associated with the branch of Spaulding where the pain Dr. is at, but he isn't covered by MA Health, and at $75 / session, I'm going to hold off on that at least until Mary-Anne has a job, or we have other income of a reliable sort, as it just isn't affordable to do out of pocket right now. (At least it seems like her prospects are improving, she has been getting more calls for interview lately, just wish they'd turn into offers...)

Country Gal - you were asking about financial help - I think some stuff has been done via Web in the past, I don't know the details, and feel that it is a bit "off" to be asking, etc., so please talk to him about that if you feel so inclined...

Kabbott - right now I don't know how or if I'll be able to keep burning wood - the immediate challenge is handling it, as neither my wood shed nor my backup stacks are "accessible" . I'm guessing I have about 2 years worth of wood on hand, maybe a little more based on past consumption - one year's worth in the shed, and a second in the backup stacks ready to be moved into the empty parts of the sheds. But I can't even move the wood from the stacks to the sheds at present, and it would be equally difficult to get it from the sheds into the house.... The ground is reasonably flat, but I don't see how I can get over the pallets and other stuff that is supporting the bottom layers of the stacks. The height will also be an issue, I stacked to about as high as I could reach (pre-accident) when making the stacks, which is WAY over my head when sitting in a chair... This is probably part of the reason why I've been less active on the hearth - some how it is less appealing to talk about it when you know that it is unlikely that you would be able to DO the stuff you are talking about...

On the good news side however, I now have a powered chair to play with, in addition to my promised (as in waiting for since I ordered it before getting discharged from Spaulding back in MAY :snake: ) manual chair and cushion, which is what most para's like me use... Nailed Nailer had a neighbor with a nearly unused 2001 "Jazzy 1100" power chair that they were going to give to charity. When he told them about my situation, they gave it to me instead... :coolsmile: It appears to only need a pair of batteries to make it work, and I may need to change or modify the seat to make it fit me better. (The "butt-seat" interface is a critical matter for folks that live in their chairs like I do) However this is not a big deal if it gets me a power chair, as that will increase the distances I can travel, and give me some level of "off-road" capability. (A similar new chair would be around $4-6K or more, so this is a really fantastic donation.....)

Gooserider

Hey Gooserider,I recently met a woman suffering from severe pain from a unhealing foot wound which developed gangrene.She had seen many doctors who misdiagnosed her problem which resulted in her gangrene.All the docs wanted to amputate however she came accross some information
regarding hyperbaric chamber treatments which cure gangrene,thermal burns,problem wounds,etc and the severe pain caused by a host of problems.The treatment cured her gangrene and her wound is just about healed and she's experiencing no more pain.Just look up Hyperbaric Chamber locations in Massachusetts and call one in your area.Tell them your circumstances and see if this treatment can help your healing.Take care.

Mary-Anne said:

Thanks for the suggestion about a hyperbaric chamber.
The wound center of Emerson Hospital, where Gooserider is getting a pressure sore treated,
has a chamber. They said his sore would heal faster with the chamber, but the insurance
would not cover it, and the wound would heal without, but slower.
They did not say anything about the chamber helping his other problems.

I figured that meant no need to spend on the chamber.
The price has 5 digits, in dollars.

Mary-Anne

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Wise man said always check never assume.So I would ask them if the chamber would help his other issues.That could take place without any cost.

Wow.

I am speechless Goose.

You gotta pay for hyperbaric chambers?

Andrew

Swedishchef said:

Wow.

I am speechless Goose.

You gotta pay for hyperbaric chambers?

Andrew

Click to expand...

The way the insurance works, they only pay for "cost effective treatments" which is determined by your diagnosis, and the cost of the treatment - something expensive like a chamber they get really fussy about what diagnoses qualify - a diabetic sore, or third degree burns (among other things) will get covered, as the chamber makes a big difference.... Someone like me, with a fairly small stage 3 pressure sore on one buttock, which is responding to regular treatment (however slowly) doesn't qualify as "needing" the chamber, so they won't pay... Some way kind of stinks, but IMHO it isn't unreasonable.

Also, while I'm not an expert on all the things a chamber is good for, I haven't heard of anything that I have wrong with me that would be helped by chamber time, other than the sore, which as I said, doesn't really need it...

Gooserider

I think you said it all in the first sentence " the way insurance works..".

I live in Canada and up here, in most circumstances, they will try anything if they think it can work. Let's not forget that most "healing aids" were more than likely frowned upon for any disease/illness/physical disability before deemed useful. 50 years ago accupuncture was nearly considered Voodoo. Today it's a common practice that most users consider "positive".

Keep the strength and let me know how you make out!

A

Swedishchef said:

I think you said it all in the first sentence " the way insurance works..".

I live in Canada and up here, in most circumstances, they will try anything if they think it can work. Let's not forget that most "healing aids" were more than likely frowned upon for any disease/illness/physical disability before deemed useful. 50 years ago accupuncture was nearly considered Voodoo. Today it's a common practice that most users consider "positive".

Keep the strength and let me know how you make out!

A

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Well, for whatever it is worth, I'm on "Mass Health" which is this state's version of Medicare, a taxpayer funded insurance system, and supposedly one of the most generous in the country.

While they will sometimes pay for stuff that is of debatable benefit, they do insist that there is at least SOME strong evidence of benefit, which from my understanding is just not there for most applications of chambers at this time...

Gooserider

Now you just need studded snow tires!

Pretty dang cool. Nice candy apple red, too. Git a matching helmet, Goose. Rick

Well first thing I really need to do is fix the seating so that I'm not in quite so much of an "obstetric" position with my legs flopping around like they are in the pictures, and get the seat base to better match the shape of my butt. I've been told that it is possible to get a replacement seat base with just a "hard pan" surface, and put the same type of cushion on it that I use with my manual chair. This is important if I want to avoid getting pressure sores from spending to much time in the chair.

I may also want to get some tires / wheels with more spring to them. The current setup has non-pneumatic tires that have a relatively knobby tread, but while they give me fairly good ability to get around off road (i.e. the lawn crossing you saw in the album) give a really bumpy ride....

Pride Mobility, the company that makes the chair does have a free "owners club" with a discussion forum, I think I need to sign up with them and see what they offer in the way of support for modding one of their chairs - it looks like the chassis would make a really good starting point for doing some serious stuff. I have fantasies about trying to rig some sort of "standing frame" to the front of the chair, which wouldn't allow me to walk around like that REX unit, but might let me at least roll up to something and "stand up" to work on it, like a workbench or a kitchen counter.... Probably wouldn't be enough to let me process wood or even burn, but a BIG improvement over what I can do now...

Gooserider

Gooserider said:

Well first thing I really need to do is fix the seating so that I'm not in quite so much of an "obstetric" position with my legs flopping around like they are in the pictures, and get the seat base to better match the shape of my butt. I've been told that it is possible to get a replacement seat base with just a "hard pan" surface, and put the same type of cushion on it that I use with my manual chair. This is important if I want to avoid getting pressure sores from spending to much time in the chair.

I may also want to get some tires / wheels with more spring to them. The current setup has non-pneumatic tires that have a relatively knobby tread, but while they give me fairly good ability to get around off road (i.e. the lawn crossing you saw in the album) give a really bumpy ride....

Pride Mobility, the company that makes the chair does have a free "owners club" with a discussion forum, I think I need to sign up with them and see what they offer in the way of support for modding one of their chairs - it looks like the chassis would make a really good starting point for doing some serious stuff. I have fantasies about trying to rig some sort of "standing frame" to the front of the chair, which wouldn't allow me to walk around like that REX unit, but might let me at least roll up to something and "stand up" to work on it, like a workbench or a kitchen counter.... Probably wouldn't be enough to let me process wood or even burn, but a BIG improvement over what I can do now...

Gooserider

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great idea mr goose,positive thinking will get you ahead in your quest
rod

Just looked up the thread to see how you were doing, Gooserider. I see I missed a whole lot. Hope you are doing better and that managing everything including the pain becomes a bit easier each day. Thoughts and prayers are with you. Seems like you have a wonderful team of loved ones and friends, I hope they will continue to help you through these tough times.

Goose and Mary Anne,

Glad to see you guys got the chair up and running. Really glad it was only the batteries that were the issue. I hope it helps you out.

With a bit of good luck you can get the seat changes you need to make your operation of it more comfortable.


Just throwing a random thought out there.....Once you can get the seat height issue solved would a Tempur (as in tempur-pedic)

http://www.tempurpedic.com/accessories/home_office/the_seatcushion_by_tempur_pedic/)

material type seat cushion do you any good? I know I have seen "salesman" sample sizes of those Swedish beds on display. Perhaps one could be obtained off e-bay (or other site) and some experiments done on it. Just an Idea. Not sure if the foam would help or hurt.

Be well,
---Nailer---

Yes, the chair seems to be running well, though I find that I can't sit in it for to long, or my seat bones really make me pay a heavy penalty for it. The seat cushion fitting is something very critical for a person with a spinal cord injury, especially one with a "complete" injury who has no sensation below the injury level. I'm an "incomplete" injury, and have some level of feeling, which helps, but still have the same basic problems that come from having to spend way to many hours sitting down...

I've heard very mixed reviews from within the SCI community about the various Tempur foam type products - there are some patients that have said they have tried them and liked them, but also some comments from rehab people advising strongly against them. Looking on the Tempur website, I'm not seeing any mention of medical applications or products, for whatever that is worth. (I have sent their customer info people a question on this, will be interested to see what they have to say...)

Gooserider

Gooserider - a friend of a friend's brother (real close yah?) has spent his career studying just what you are talking about , had a "butt lab" where he worked on such things. He's in GA now but I notice that on his website there is a sign up sheet where you can participate on their research programs, potentially, which are on chair seats and other assisted technology - on the upper right hand corner of the page is a link to the form, if you are interested.
http://www.shepherd.org/research/staff/40

Good luck and it's nice to see you here!

Thanks for the reference and the link Tickbitty! I would be quite interested in participating in almost any sort of research and especially something along this line that might actually help w/ quality of life issues however mildly... (I don't have a lot of expectations for them to find an actual cure any time soon)

I just finished filling out the application to participate in their research that you mentioned.

Gooserider

Good to hear from you Goose! I have slept on the memory foam pillows from Sams Club for quite a few years & they work very well for my sore neck. They might help, Randy

Singed Eyebrows said:

Good to hear from you Goose! I have slept on the memory foam pillows from Sams Club for quite a few years & they work very well for my sore neck. They might help, Randy

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Well I just got a response from the Tempur folks, and they said that they don't make wheelchair cushions any more... Other than giving me a hard sell on a bed, their response wasn't real helpful...

Right now I'm on a hybrid foam / air cushion where I have an open cell foam frame of sorts around the outside and at the front, with an adjustable air cushion that looks like a nest of little fingers sticking up under my actual sitting bones - it isn't real comfortable, but it is a BIG improvement over what I was on.

Gooserider

Goose,

When my hubby was long-term bed ridden they had him on an air bed mattress that cycled through different settings throughout the day to avoid bedsores. Is there something like this available for a seat?

Shari

Shari said:

Goose,

When my hubby was long-term bed ridden they had him on an air bed mattress that cycled through different settings throughout the day to avoid bedsores. Is there something like this available for a seat?

Shari

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Seems to me that would be an obvious approach to the solution - something to cycle through different zones so as to shift the pressure areas. I think that folks that have full feeling do this without realizing it by shifting position. With limited or no feeling I would imagine that one doesn't get the signals from the nerves telling you that circulation has been cut on some particular spot for too long and needs a break. Some sort of seat that would have inflatable zones that would modulate on a schedule to shift pressure zones enough to shift the weight around a bit would seem to be a good solution.

I sure hope someone has created such a seat and given it a try - if not I hope someone does as it seems like a rather obvious approach to solving the problem eh?

Gooserider said:

Swedishchef said:

Wow.

I am speechless Goose.

You gotta pay for hyperbaric chambers?

Andrew

Click to expand...

The way the insurance works, they only pay for "cost effective treatments" which is determined by your diagnosis, and the cost of the treatment - something expensive like a chamber they get really fussy about what diagnoses qualify - a diabetic sore, or third degree burns (among other things) will get covered, as the chamber makes a big difference.... Someone like me, with a fairly small stage 3 pressure sore on one buttock, which is responding to regular treatment (however slowly) doesn't qualify as "needing" the chamber, so they won't pay... Some way kind of stinks, but IMHO it isn't unreasonable.

Also, while I'm not an expert on all the things a chamber is good for, I haven't heard of anything that I have wrong with me that would be helped by chamber time, other than the sore, which as I said, doesn't really need it...

Gooserider

Click to expand...

And that is exactly why Obama (like him or not) set up the healthcare system and rules.
My mom paid her insurance premiums for 60 years without fail. When she became ill and was in and out of the hospital the insurance company (the same one all those years) informed her that they were dropping her. Under the new laws, that will no longer be allowed. Insurance companys are good for one thing...making the rich executives richer...that is all. I have been there and been through it. That's why i took her and my dad in my home to take care of them until she passed away almost two years ago. My dad still lives with us.

Shari said:

Goose,

When my hubby was long-term bed ridden they had him on an air bed mattress that cycled through different settings throughout the day to avoid bedsores. Is there something like this available for a seat?

Shari

Click to expand...

They do make such a cushion, and from what I've been told, they work pretty well, but there is a BIG drawback to that type of cushion - namely a substantial power draw requirement... The power draw is such that I'd have to have a 30-40lb battery strapped into my manual wheelchair, which is not a viable approach when trying to make the chair as light as possible in order to minimize the abuse of the shoulders. There are some power chair users that I'm told have that sort of cushion, but even for them it's somewhat of a concern in that it makes a significant dent in their battery life, so that they have to recharge more often.

What I've actually seen more commonly for the quads is to put them on an air cushion, and have a power recline function on their chair - they are then taught to recline their entire seat for a couple minutes every 20-30 minutes. This tilt of the entire body is supposed to be good for both avoiding pressure sores and also helps keep other body functions (such as the digestive tract) functioning semi-normally... Seems a large part of our body functions are partially driven by weight shifts...

I am currently on one of those air mattress deals for sleeping - because of the limited space in the house, we had to get what is called an "overlay" type unit that straps over our regular mattress - it works, but seriously sucks for sleeping on - it is a row of tightly spaced air tubes that have every other tube alternately inflate and deflate, which makes it like laying on a bed of logs... Fortunately, the pressure sore on my buttock that caused me to be put on the thing has now healed up (I got officially discharged from the wound center yesterday :cheese: ) so I can get the thing sent back to the rental place and go back to the Select Comfort mattress I was on...

Slow1 is quite right in general - able bodied folks automatically do pressure relief movements without really thinking about it most of the time, and usually in ways that aren't as obvious because they are usually more frequent, but much smaller in size, etc...

As to the insurance industry - remember that in reality, it is little different from any other sort of gambling - you bet that you get sick, they bet that you won't - and like any other gambling game, there is always a house cut, and the house never loses.......

Gooserider