[QUAD-L] Interview request for New Mobility magazine

[Robert Vogel]

Hi All,

Bob Vogel here, senior correspondent for New Mobility magazine.  We are working 
on an article
Medical Marijuana it's use to treat pain, and/or spasticity or other problems 
associated with spinal cord injury.  We are looking for people with spinal cord 
injury (SCI) that have a Medical Marijuana card
and use it to treat one or more of these conditions, and will be OK being 
interviewed for the
article.  We can use your real name or if you prefer to stay anonymous, we can 
do that and 
guarantee a anonymity and a pseudonym. 

This is an important subject, and other wheelchair users offer important and 
vital insight!

If you are interested, please contact New Mobility editor Tim Gilmer at 
tgil...@newmobility.com 

Sincerely,
Bob Vogel

Re: [QUAD-L] just another day in quadadise

[Lori Michaelson]

You hit the nail on the head Dave! Things out there are just getting worse
and worse. I can't even find a doctor after moving to Arizona and because
the one doctor got tired of trying to find a home health agency to take me
on and the home health agencies [Medicare certified ones which I am forced
to go to because that is my only insurance] he sent me a letter saying that
he thought I needed a doctor that would provide more care for me and
telling me that I had to find a new doctor within 30 days! I have never
ever in my entire life had a doctor drop me. However, he was the most
egotistical, arrogant physician (PCP or otherwise) I have ever had.

The only reason I have had to go to my primary care physicians have been to
get my medications and to write out orders for home health agencies to
provide skilled nursing care to change my catheter once a month and to
bring the of the supplies.

The next problem I have come across is, since moving back to Tucson
Arizona, is not only finding a physician who is accepting new patients but
a primary care physician who will accept the patient who is on a pain med
of any sort... which I am.

I very much wanted to go back to the same doctor I had before I left Tucson
and that same doctor would take me back IF I WAS NOT on a pain med. This
was not the case 3 years ago. Now almost all Tucson's physicians are not
taking on patients who were on pain medications... and they are including
Valium/diazepam as well. Jesus... I have been on diazepam since 1979/1984
spasms. After acquiring syringomyelia I began to develop pain and have been
on a pain med [low dose] since 1998. But trying to find another doctor has
been a nightmare!

So... get this...I finally found one and when I went in there I was first
seen by her Medical Assistant to put all my information down in their
computer which is common. The problem was... he was from another country
and could not understand me or my caregiver. So it took him an entire hour
to write down 5 medications and what my surgeries were and just a couple
other things.

My appointment was at 2:45 PM but I had to arrive at 2:15 PM to fill out
the initial paperwork... which is always done with a new doctor.

When the doctor came in she got straight to the point and faced the
computer 99% of the time statistically speaking. Then comes the completely
unexpected bombshells:

My husband or my sister or my caregiver have always been the ones to pick
up my pain med script every month at the doctor's office because it is a
controlled substance and that was fine over all these years. Simply because
it is easier for them to hop in their car and drive over to get it rather
than me going out, getting in the van, and getting into the doctor's office
just to get a piece of paper every month. THIS doctor requires that THE
PATIENT come in every single month to get that piece of paper. IN ADDITION
TO THAT... THIS doctor requires random drug tests via urine specimen.
Again, never ever have I had to have this done in my life or since been on
pain meds since 1980.

I feel it is a form of discrimination. The reason behind all this is
because, most likely anyway, is because the illegal aliens are jumping the
wall and Mexico so frequently with illegal substances and either abusing
them or selling them. But the doctors should look at the patient's
situation and it be obvious that I am not one of those people.

I did not go through this in the Northeast and I did not go through this
when I lived here in Tucson 3 years ago. So, again, all these doctors have
changed their policies as far as accepting patients or going to this
extreme if you are on a payment of any sort.

It did not occur to me at the time I was in the office since I was in there
for so long and after leaving here at 1:45 PM to get there at 2:15 PM
[because she is 45 minutes away] to ask her what if I were bedridden [like
I was between 2009 and 2012 and bedridden 24/7 for almost the entire summer
of 2010 when my Stage III wound was so bad that it would be detrimental for
me to get out of bed.

Now I have to make a trip every 28 days that will take 2 hours of my day
just to pick up a piece of paper. I tried so very hard to find a closer
doctor and it did but that was the one who dropped me.

This e-mail does not even include what Dave brought up as far as people not
getting back to you no matter how minor or how important the issue is. For
example, I had some bladder pain a couple weeks ago and asked my urologist
to have my home health agency nurse to collect a urine specimen to send out
for culture and sensitivity. This was a week and a half ago and I have
still not gotten the results! I have found this to be more and more common
with getting the results of culture and sensitivity results from any
doctor. And it is ridiculous because if I was in pain this entire time or
had a fever am still waiting for the results... I could be dead by now.

Thankfully the pain went away but my urologist [whom I have had sin

Re: [QUAD-L] just another day in quadadise

[wheelchair]

Your local Center for Independent Living (CIL) Should be made aware of  
this, or have a list of companies offering discount services.  Also the  major 
5 SCI Rehab Hospitals have discharge planners with lists of  service  
providers to help or assist.
 
Best Wishes
 
 
In a message dated 4/22/2016 3:15:42 P.M. Central Daylight Time,  
davekrehb...@earthlink.net writes:

 
My  experience over the past eight years has been that many companies who 
provide  services to quadriplegics provide a low level of service (and 
typically at a  higher price). I think that is because they are small 
specialized 
companies  who don't have a lot of competition. 
Severely  disabled folks like us have an increased need for services, and a 
decreased  ability to pay for them.  
There  are some companies out there (such as a local landscaping company, 
in my case)  who provide services at a discount or free to the long-term 
seriously  disabled. I used to rake my own leaves, and paint my own house, and 
change my  own oil, and so forth. Now our family has to pay people to do all 
these  things. I keep wondering if there might be a way to create a 
directory of  local companies that will offer service discounts to people with 
long-term  disabilities. Or if there might be a way to identify and advertise 
local  community minded businesses, and subsidize services. 
For  example, I'd like to find restaurants who would give a discount to 
people in  wheelchairs. After all, I can't visit most people in their own 
homes, and I  cannot be as hospitable as I would like to be here at my house, 
and 
so local  restaurants would be a great place to get together. And I would 
like to be  able to buy discounted restaurant certificates as a way to say 
thank you to  volunteers who come and help with household tasks. 
If  anybody has interest in this sort of thing, or has contacts at a 
nonprofit  which has programs along a similar line, please let me  know. 
Thanks,  and take care, 
Dave  Krehbiel 

RE: [QUAD-L] just another day in quadadise

[Dave Krehbiel]

My experience over the past eight years has been that many companies who 
provide services to quadriplegics provide a low level of service (and typically 
at a higher price). I think that is because they are small specialized 
companies who don't have a lot of competition.

 

Severely disabled folks like us have an increased need for services, and a 
decreased ability to pay for them. 

 

There are some companies out there (such as a local landscaping company, in my 
case) who provide services at a discount or free to the long-term seriously 
disabled. I used to rake my own leaves, and paint my own house, and change my 
own oil, and so forth. Now our family has to pay people to do all these things. 
I keep wondering if there might be a way to create a directory of local 
companies that will offer service discounts to people with long-term 
disabilities. Or if there might be a way to identify and advertise local 
community minded businesses, and subsidize services.

 

For example, I'd like to find restaurants who would give a discount to people 
in wheelchairs. After all, I can't visit most people in their own homes, and I 
cannot be as hospitable as I would like to be here at my house, and so local 
restaurants would be a great place to get together. And I would like to be able 
to buy discounted restaurant certificates as a way to say thank you to 
volunteers who come and help with household tasks.

 

If anybody has interest in this sort of thing, or has contacts at a nonprofit 
which has programs along a similar line, please let me know.

 

Thanks, and take care,

Dave Krehbiel

 

 

From: Danny Hearn [mailto:ddh...@sbcglobal.net] 
Sent: Friday, April 22, 2016 12:37 PM
To: RONALD L PRACHT; Quad-list Post
Subject: Re: [QUAD-L] just another day in quadadise

 

Glad you got it Ron, you are right about trying to not get mad or hold 
resentments towards people because all that does it harms the one holding that 
stuff inside...On other hand though if a person tells you they will come in one 
of the next 3 days it is a shame they can't at least call and let you know 
about it, could be he just forgot or had other things of life come up on him. 
hope  you get it going soon, let us know. Dan H**

 

On Thursday, April 21, 2016 10:49 PM, RONALD L PRACHT  
wrote:

 

Well peeps,

I get my rio dragonfly( attachable powered handcycle) from ebay last week 
and I was happy about potential fun I would have with it this spring/summer. 
This guy I know told me he would come and help me get it fitted either tues, 
wed or thurs of this week. in preparation I read the manual , put some of it 
together, charge battery and get it set up to make it easy as possible for when 
he comes. I wait all week and the guy never shows up or even calls me. I told 
myself that I wasn't going to get mad so I rigged the legs of the cycle on jack 
stands in my room and was able to adjust them to the right length by myself. 
Its all together now and adjusted as well as charged. If my mom will just hold 
the front of the bike, Im going to try to attach it tomorrow for the first 
time. I would have tried that myself but the front end has a spring that brings 
the wheel back to center when you turn and that needs adjustment I think. 
Somehow..someway Im going to get this thing going by hook or by crook. 
I guess anything you want bad enough you can figure out, but it sure is a big 
deal to do the simplest things as a quad.

 

Ron

 

Re: [QUAD-L] just another day in quadadise

[Danny Hearn]

I hear  you Lori.I feel for you Quads that don't have a partner or close 
family...It takes a lot of courage,guts and Will to carry on in such tough 
conditions. I do have children but they are not real close and have busy lives 
with their own families and jobs, i rely on my wife for about everything...I'm 
like a few on the list that hope we pass before our partners do, We had been 
married for many years before we were in our car accident that left me 
Paralyzed. I was 40 and my wife (Leeann )  was 36 at that time.I'm now 59 
and she is 56.  Right now i'm dealing with kidney or bladder trouble not sure  
if I have and infection or stones or something going on, I have been blessed 
because after I had a huge bladder stone removed at age 50, I have not had any 
more stones and only a few  bladder infections in the last 9 years or so. May 
God bless you all, Dan H*** 

On Thursday, April 21, 2016 11:21 PM, Lori Michaelson 
 wrote:
 

 ​Well, on one side of the situation you are very lucky to be able to use such 
a machine because my level of injury does not allow that. Secondly, you are 
fortunate to have your mother available (I lost my mother when I was 16 years 
old and my father when I was 13 years old. While my injury happened in the 
middle of both of their deaths... when I was 15 years old).On the flip side, it 
seems like people from all types of services and situations (even Dr. offices 
or any place that might even be selling something and you would think they 
would want to call you back for your interest in their product or whatnot, etc. 
etc. etc.). Just don't call you back anymore.I am come across this so many 
times it is pathetic. And sad.~Lori
On Thu, Apr 21, 2016 at 11:49 PM, RONALD L PRACHT  
wrote:

 Well peeps,    I get my rio dragonfly( attachable powered handcycle) from ebay 
last week and I was happy about potential fun I would have with it this 
spring/summer. This guy I know told me he would come and help me get it fitted 
either tues, wed or thurs of this week. in preparation I read the manual , put 
some of it together, charge battery and get it set up to make it easy as 
possible for when he comes. I wait all week and the guy never shows up or even 
calls me. I told myself that I wasn't going to get mad so I rigged the legs of 
the cycle on jack stands in my room and was able to adjust them to the right 
length by myself. Its all together now and adjusted as well as charged. If my 
mom will just hold the front of the bike, Im going to try to attach it tomorrow 
for the first time. I would have tried that myself but the front end has a 
spring that brings the wheel back to center when you turn and that needs 
adjustment I think. Somehow..someway Im going to get this thing going 
by hook or by crook. I guess anything you want bad enough you can figure out, 
but it sure is a big deal to do the simplest things as a quad.
Ron



-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and heart 
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz


  

Re: [QUAD-L] just another day in quadadise

[Danny Hearn]

Glad you got it Ron, you are right about trying to not get mad or hold 
resentments towards people because all that does it harms the one holding that 
stuff inside...On other hand though if a person tells you they will come in one 
of the next 3 days it is a shame they can't at least call and let you know 
about it, could be he just forgot or had other things of life come up on him. 
hope  you get it going soon, let us know. Dan H** 

On Thursday, April 21, 2016 10:49 PM, RONALD L PRACHT 
 wrote:
 

  Well peeps,    I get my rio dragonfly( attachable powered handcycle) from 
ebay last week and I was happy about potential fun I would have with it this 
spring/summer. This guy I know told me he would come and help me get it fitted 
either tues, wed or thurs of this week. in preparation I read the manual , put 
some of it together, charge battery and get it set up to make it easy as 
possible for when he comes. I wait all week and the guy never shows up or even 
calls me. I told myself that I wasn't going to get mad so I rigged the legs of 
the cycle on jack stands in my room and was able to adjust them to the right 
length by myself. Its all together now and adjusted as well as charged. If my 
mom will just hold the front of the bike, Im going to try to attach it tomorrow 
for the first time. I would have tried that myself but the front end has a 
spring that brings the wheel back to center when you turn and that needs 
adjustment I think. Somehow..someway Im going to get this thing going 
by hook or by crook. I guess anything you want bad enough you can figure out, 
but it sure is a big deal to do the simplest things as a quad.
Ron