Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-27-2010, 09:41 AM #11
daylilyfan daylilyfan is offline
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Check out the youtube link in my first post. It shows how many common tasks are taught.

The Barbara Handelman "clicker train your own service dog" DVD set is about $100 new...you might find it used online... but Barbara is mostly in a wheelchair, and she trains SDs. Being in a chair restricts some things, but not most as far as training. Barbara is on a couple of the forums I PM'd to you - and is more than happy to answer questions.

Last edited by daylilyfan; 07-27-2010 at 10:36 AM. Reason: corrected spelling of Handelman
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Old 07-30-2010, 10:35 AM #12
bobinjeffmo bobinjeffmo is offline
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It's truly a pleasure to meet you, because the timing couldn't have been better.

After years of me getting progressively worse, we knew that and a service dog could make a substantial difference in my daily life, but we didn't know where to start. After talking with my butcher about how labs make great service animals, he told me that he thought my vet of 20 years might be working with some "cell dogs program." I called her up and learned that while our state prison has a program outside St. Louis, MO, we don't have one here in central MO. The vet said she'd get back with me.

Last Monday (one week later) I got a call from the vet asking me to call the director of the animal shelter ASAP because there was a meeting scheduled between the prison and the animal shelter. Evidently our prison has been making dogs adoptable, but here they hadn't gone any further. I learned that a satellite program was now being started and that I'm to be their first test case. Yesterday the prison called me up and asked for all our information so they could do a background check. Today at 1 we're meeting at the prison. They've evidently found a 4 month male black lab puppy. Since I've only had cats all my life, I've never been more excited and scared in my whole life.

Any information you can share about what I need to do or need to learn would be appreciated more than you'd possibly know. The only thing we'd learned up till now was various shows we'd seen on TV about these service cell dogs programs and how they change not only the lives of the disabled, but also the prisoners and prison guards as well. Such a win-win situation.

What organizations or web sites should I visit so I can learn anything and everything about what lies ahead? Because of my disability being rather severe, I'm right now just feeling overwhelmed by it all. It's not just my needs that I care about, but more importantly the way this could help others that has me so excited. Of course I've also got a rather extensive list of questions about how far and what a service dog might be able to help me with, as well as what I'll need to do so I can provide a great life for this dog, but I really don't know where to turn right now. Thanks a million, Bob.

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Originally Posted by daylilyfan View Post
I'd like to share with everyone what it's like to get and to have a service dog to mitigate RSD.

There are a couple ways to obtain a service dog. One way is to apply to a service dog training program. They will match you with a dog that suits your personality, your abilities etc. the dog will be trained for any special tasks that you might need. The wait is very long - usually years, and the cost can be as much as $25,000. Some programs donate dogs if the person needs one bad enough and cannot afford to buy one. The program retains ownership of the dog, and you have to do yearly checks with their trainer to be sure your maintaining the dog's health and training. If not, they can pull the dog from you. I heard of one Lab being pulled because he was a few pounds overweight.

Another way to get a service dog is to train one your self. This is called "owner-training." If you have experience training dogs for obedience competition, agility, or other intensive dog training experience this may be the best way to go. Still, most people will pay an experienced service dog trainer to choose their dog for them. Choosing a dog for service work is quite different than choosing a dog for a pet. A service dog must be willing at all times to go above and beyond its training, think for itself, make decisions, and have unbelievable manners for public access training.

I am 52 and I trained my first dog when I was 11. I have shown extensively in obedience and done well. So I thought I would give training my own dog I try. If it didn't work out, I would then apply to a program for a dog that was already trained. The first dog that I tried to train could then be used around the home or by my 86 year-old mother who lives with me.

I started reading about training a service dog almost 3 years before I got my dog. I've researched what personality traits, breeds, size, even the tasks I might require now and in the future. I bought books, training DVDs, and learned in advance what would be required to do the training before I made the decision I wanted to try it myself. I tried to get a good picture in my mind of what type of dog would be needed then I started my search for a young dog. I decided to get a dog from a prison "cell dog" program. Since I have a hard time bending to the ground I did not think I wanted to try to housebreak a young puppy. So I started looking for a dog between five and seven months of age.

I looked for two years. I went and looked at a few of the dogs I found on rescue sites and through the Ohio Correctional Facilities links. Since I have always had Border Collie's, Australian shepherds, or a combination of the two, I knew I wanted one of those breeds as one of the parents and probably a Labrador Retriever as the other. Since brushing my 13-year-old pet Australian Shepherd's coat is very difficult for me, I needed to look for a dog with a short to medium hair length in addition to the correct personality, size etc. A tall order to fill.

I got to know the head trainers of a couple of the prison programs. One day one of them called me and said they had a litter of puppies he thought I should look at. They had been seized from a hoarder when they were just a few weeks old. The mother was a Border Collie and the father a Lab. Both parents had been through the 6-week training class at the prison and passed it with ease. Very smart, gentle dogs. I went to look at the puppies and one of them was a clear standout. I decided to adopt her. She had lived with a prisoner from the time she was seven weeks old until I adopted her at six months. He did a wonderful job with her.

It took a while for her to get used to my training style. I am what is called a positive reinforcement trainer. I used a method called "Clicker Training" and the prisoner had used traditional training. They are quite different. Clicker Training teaches the dog to think and puzzle out what you want. Traditional training teaches a dog to do what you say, not matter what or where. For a Service Dog, you want a dog that thinks. You never know when you might be injured, or unable to aid the dog by telling it what to do. You want a dog that will step up to the plate, make some decisions on it's own to help you.

When I got this dog she'd never seen a house, a tree, a cat -- all she knew was prison life. It took a couple months but she adapted very well. I worked on retraining her obedience work to my standards and my ways for a few months. When she was about nine months old I started the basics of what would become her specialized training. I continue to train her today, even though she knows many things, because as we all know with RSD things can go downhill rapidly. One bad fall or car accident and I could be wheelchair-bound. So I am training her all sorts of things that I may never need, but if I do she'll be ready. There have been many days when I surely did not feel like training. But the outcome has been more than worth the effort.

Let me share with you some things that she helps me with. First you need to know that I wear AFO braces on both legs, and I really should be using a cane or walker to help steady me. But it's very painful for me to push down. So the first thing I taught her was how to wear a harness with what is called a handle -- it looks sort of like what a guide dog would wear -- and I hold that handle to steady me to walk. She needed to learn to go up and down steps one at a time, slowly, by my command, to use her weight to counterbalance me as I wobble when I walk. She also needed to learn to keep a light but steady pressure on the harness to help me move forward. No pulling, just slight forward pressure. Just this task alone is worth everything to me as far as my mobility.

Next, because I have RSD, fibromyalgia, myofascial pain, and now peripheral neuropathy I am very stiff and have a difficult time picking things up on the ground, getting dressed etc. In addition to helping me walk, Josie will pick up anything I point to on the floor. A dime, a credit card, a dollar bill, a bottle of water, my purse strap, something I might drop in a store -- all sorts of things. The other day I was in a store and they were giving away samples of salami. They were giving it to the people in little paper cups. I dropped mine. Josie not only picked up the little paper cup and put it in my hand, but she picked up the little piece of salami and put it in my hand. She didn't even question if she was supposed to eat it or pick it up. Picking things up and variations of that are one of the most useful things that Josie does.

When I undress, my clothing falls to the floor. Josie will pick it up and either hand them to me, or if I tell her "basket" she will pick the items up and take them to the closet and put them in the laundry basket. She loves toys and bones and has many but leaves them everywhere, and on command she puts her toys in what we call her toybox. She knows how to push with her nose so she can close a cupboard door, or a drawer. She also knows how to pull so she can open cupboard doors and drawers.

She's only about 50 pounds so she's not that big. Not big enough to reach most handicapped buttons to push with her nose, so she has learned to stand up and push them with her foot. When we are in the car, she will stand on my lap and reach to get my seatbelt and pull it down for me, then she gets into the backseat.

She knows how to bring me the phone, and she knows how to tell me that my Mom wants me, and how to tell my Mom that I want her. Our bedrooms are in different areas of the house, and it makes me feel at ease knowing that Josie can go and wake Mom up, with a certain cue tell her that I need her. Also that Mom can have Josie do the same thing for her.

Let's see, what else does she do? She helps me get dressed and undressed. If I am putting on shorts or jeans I drop them to the floor, put my feet in the openings, tell her "up" and she will grab hold and raise them up high enough for me to get a hold of them with my hand. To take a pull-over shirt off, she'll get on the bed, I lean over, she grabs the shirt by the nape of the neck and gently pulls until it's off. Coats and shirts with sleeves she knows the word "sleeve" and will take first one sleeve, pull it off, then the other to help me get them off. She also knows how to take my socks off, untie my shoes, even pull the Velcro straps that hold my braces on.

I use Lidoderm patches. My mother puts them on my back over the spot I can't reach. Now I don't need to have Mom take them off... I've trained Josie to take them in her teeth and gently pull them off. That was a bit tricky, as I didn't want the medication side of the patch touching the inside of her mouth.

Another thing that's very useful she knows how to flip my bedroom light switch on and off. I get so stiff at night, and my hands go numb, I cannot reach or turn my bedside lamp switch to turn it on. No more stumbling in the dark - all I have to do is say "Josie! -- switch!" And the lights will be turned on or off.

I am sure I am forgetting things that she knows how to do. She knows so many things now, it's hard to remember them off the top of my head. I am currently training her to pull my cover's up and down on the bed so she'll know how to do it before winter. Everyone here knows how many times a night the covers go up and down :-)

It's not inexpensive to have a service dog. However there is an organization called the International Association for Assistance Dog Partners. You join IAADP for $30 a year. Then your service dog is eligible for free heartwormer, and flea treatment. Also yearly shots and vet care are greatly discounted. At Josie's annual checkup, she got all her shots, stool check, heartworm test, heartworm and flea treatment for a year - I think it came to $30 total. Once the dog is a legitimate service dog by law, you can deduct all expenses relating to the dog even dog biscuits, mileage to go to training class or vet, and toys. Everything the dog needs for everyday life or to be trained to assist you is deductible in you have enough medical deduction to claim it. Service dogs are considered to be medical equipment for tax purposes.

What is harder for me to explain, is what this dog has done for my life. I've had at least one dog my entire adult life. I've been very close to them because of many hours of training and showing, hiking etc. but somehow a service dog understands that it is helping you and there is a different bond that is formed. It is not owner/dog it is a partnership.

On her own, Josie has started to do what is called medical alert with me. Not that many service dogs learn to do this. Training a dog for diabetes alert is rather easy because the smell of a person changes when their sugar level changes. But it's very difficult if not impossible to train a dog to tell when you are having extra pain, or are **going to have** extra pain, spasms etc. more or less the dog either has it in them and does it on their own or never learns.

If your RSD affects you to the point of having a legal disability that a dog could help with, I would certainly encourage you to try to get a service dog. Having a service dog is not for everyone. No matter how bad you feel the dog needs to go outside, be fed and so on. For some it's not worth it. For me -- I should have trained a dog for me 10 years ago.

If you have a dog already, you can train it to do some tasks around the house to help you, even if it never becomes a true service dog by law. Barbara Handleman has a great DVD series out called "Clicker Train Your Own Service Dog." It is pricy, but it explains so much about having, using, and training a service dog. Also, there is a great series of videos on YouTube by a Service Dog Trainer. Almost any dog can learn to do some tasks to help.
http://www.youtube.com/user/supernaturalbc2008#g/u
In addition to that there are many service dog training lists that you can join to learn more about training your own Service Dog.

Oh, and by the way, many people think Service dogs lead very serious, sad lives. Not true. Josie is ALL business when her working vest is on. But, she works hard and plays hard. She is the happiest dog I have ever had. She gets to go with me all the time, she has a couple dog friends that come for play time. She loves to fetch balls. So, if you do see a service dog team - be happy for the dog, not sad. They lead great lives!
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Old 07-30-2010, 12:14 PM #13
ALASKA MIKE ALASKA MIKE is offline
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Just yesterday my PT told me again to get a service animal. she said a monkey might be better for my needs and to look into it, but at least get a service dog.

my problem is i used to train dogs (shutzhund training)(police dog training,obedience, tracking, protection), and now being bed bound 24 hours a day i have difficulty getting my caregivers dog outside during the day when she is gone so i think i am stuck with purchasing a serviceanimal rather than training.

have any of you seen a service monkey at work or know anyone with a monkey?

i would also like to know your opinions between a monkey and a dog as far as owning them. what i am trying to say is speak freely about reasons to not get amonkey over a dog. as you can see, i have little knowledge of service monkeys..

daylilyfan, thanks so much for starting this thread. the timing of it is perfect

mike
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Old 07-30-2010, 02:15 PM #14
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Quote:
Originally Posted by ALASKA MIKE View Post
Just yesterday my PT told me again to get a service animal. she said a monkey might be better for my needs and to look into it, but at least get a service dog.

my problem is i used to train dogs (shutzhund training)(police dog training,obedience, tracking, protection), and now being bed bound 24 hours a day i have difficulty getting my caregivers dog outside during the day when she is gone so i think i am stuck with purchasing a serviceanimal rather than training.

have any of you seen a service monkey at work or know anyone with a monkey?

i would also like to know your opinions between a monkey and a dog as far as owning them. what i am trying to say is speak freely about reasons to not get amonkey over a dog. as you can see, i have little knowledge of service monkeys..

daylilyfan, thanks so much for starting this thread. the timing of it is perfect

mike
Service monkey? I never heard of one. It sounds kind of funny really. Can you imagine if the monkey jumped on your back? "Dang, I've got to get that monkey off my back."
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Old 07-30-2010, 03:16 PM #15
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Service monkey? I never heard of one. It sounds kind of funny really. Can you imagine if the monkey jumped on your back? "Dang, I've got to get that monkey off my back."
thats funny. the only thing that comes to mind for me is the movie in the 1980's called 'monkey shines'. its a horror movie

i did google service monkeys and there are monkey schools to help the disabled but i havent looked in depth on the websites.
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Old 07-30-2010, 03:25 PM #16
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thats funny. the only thing that comes to mind for me is the movie in the 1980's called 'monkey shines'. its a horror movie

i did google service monkeys and there are monkey schools to help the disabled but i havent looked in depth on the websites.
My few experiences with monkeys in the past is they can be quite independent a.k.a. nasty and a bit mean. I'd be more trusting of a dog but heck maybe monkeys can be good service animals, I just never heard of them and assumed they may be hard to train, but why not?
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Old 07-30-2010, 04:30 PM #17
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I only have a minute - but should have more time tomorrow to answer everyone's questions.

First, about the 4 month lab pup - I would not want to get the first dog trained. Even in progams, the percent of failure is 9 dogs fail per one dog placed. You want a dog that has had people with experience working with it.

In the next day or so, I'll PM you with some forums that you can join. THere will be someone near you to give you guidance on getting a SD. Can't you get one from the prison who has a training program in place? Also, although most SD are Labs, or Goldens, there are some lines of really nutty high strung Labs. The pups temperment is #1 in priority.

About getting a monkey - currently the laws say service animal. But the administration currently in office wants to make some sweeping changes. First on their list is to change the law from service animal to service dog. So, be aware that if they get their way, that dogs will be the only animal allowed.

I wonder if the admins would allow me to post links to service dog forums publicly. I know it's a no-no to post links to other forums, but NeuroTalk really has nothing service dog related so it would not conflict.

I'd love to post more right now. But, I have to get my symptom report done for SS so I can get it mailed tomorrow.

oh - you can train a SD to go on puppy pads. There are people who live alone and have a SD and cannot take them out, and live in apartments or places where they cannot have a doggie door. Also, many people train their dogs to go on puppy pads when traveling, as dog relief areas at airports can be a LONG way for a disabled person to go.

If I don't know answers, I can find out. I am thrilled that there is interest here, because a dog can really help you out. IF your interested, make a list of what you have problems doing. Such as, if you can't get up if seated, or need assistance getting in to a wheelchair, you need a good sized dog. If you don't need help with that, a much smaller dog will do. The smaller the dog, the less expensive to feed, vet care, groom, even collars cost less, and the lifetime of a smaller dog is longer than a big dog.

I promise - I will be back!
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Old 07-30-2010, 08:08 PM #18
Lisa in Ohio Lisa in Ohio is offline
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Hi! While realizing that this subject is very serious and service animals can be of great benefit to those that have them, I just had to giggle.

After one of my many surgeries, my daughter (she lives in S. Ca) told me that she was so glad that grandma (my mother) was with me so that she could be my "helper monkey". Of course it stuck and grand ma has remained the "helper monkey" ever since then.

Just thought you might appreciate the sentiment. Lisa
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Old 07-30-2010, 08:27 PM #19
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Mike, I just got an email telling me of this update - it is now official. Service animals regulations have changed. Dogs and with some rules, mini horses are the only animals that will be allowed as Service animals. This now excludes monkeys, and other animals. I even know of one woman who uses a small pygmy goat as a pack animal - has it house trained and everything.

Now, this means you could still use a monkey, but you could not take it out in public like you could a dog, and you would not be able to take tax deduction, get from meds, have allowance made in houseing etc.

http://www.ada.gov/regs2010/ADAregs2010.htm

"On Friday, July 23, 2010, Attorney General Eric Holder signed final regulations revising the Department’s ADA regulations...."
"Service animal means any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability. Other species of animals, whether wild or domestic, trained or untrained, are not service animals for the purposes of this definition. The work or tasks performed by a service animal must be directly related to the handler's disability. Examples of work or tasks include, but are not limited to, assisting individuals who are blind or have low vision with navigation and other tasks, alerting individuals who are deaf or hard of hearing to the presence of people or sounds, providing non-violent protection or rescue work, pulling a wheelchair, assisting an individual during a seizure, alerting individuals to the presence of allergens, retrieving items such as medicine or the telephone, providing physical support and assistance with balance and stability to individuals with mobility disabilities, and helping persons with psychiatric and neurological disabilities by preventing or interrupting impulsive or destructive behaviors. The crime deterrent effects of an animal's presence and the provision of emotional support, well-being, comfort, or companionship do not constitute work or tasks for the purposes of this definition."

Last edited by daylilyfan; 07-30-2010 at 08:47 PM. Reason: clarification
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Old 07-31-2010, 03:12 PM #20
ALASKA MIKE ALASKA MIKE is offline
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well that makes the decision easy now.

i sure hope that there was a grandfather clause for the others though...

thanks

mike


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Originally Posted by daylilyfan View Post
Mike, I just got an email telling me of this update - it is now official. Service animals regulations have changed. Dogs and with some rules, mini horses are the only animals that will be allowed as Service animals. This now excludes monkeys, and other animals. I even know of one woman who uses a small pygmy goat as a pack animal - has it house trained and everything.

Now, this means you could still use a monkey, but you could not take it out in public like you could a dog, and you would not be able to take tax deduction, get from meds, have allowance made in houseing etc.

http://www.ada.gov/regs2010/ADAregs2010.htm

"On Friday, July 23, 2010, Attorney General Eric Holder signed final regulations revising the Department’s ADA regulations...."
"Service animal means any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability. Other species of animals, whether wild or domestic, trained or untrained, are not service animals for the purposes of this definition. The work or tasks performed by a service animal must be directly related to the handler's disability. Examples of work or tasks include, but are not limited to, assisting individuals who are blind or have low vision with navigation and other tasks, alerting individuals who are deaf or hard of hearing to the presence of people or sounds, providing non-violent protection or rescue work, pulling a wheelchair, assisting an individual during a seizure, alerting individuals to the presence of allergens, retrieving items such as medicine or the telephone, providing physical support and assistance with balance and stability to individuals with mobility disabilities, and helping persons with psychiatric and neurological disabilities by preventing or interrupting impulsive or destructive behaviors. The crime deterrent effects of an animal's presence and the provision of emotional support, well-being, comfort, or companionship do not constitute work or tasks for the purposes of this definition."
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