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 07-24-2010, 10:26 PM #1
daylilyfan daylilyfan is offline
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Default Service Dog for RSD - (Long 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 07-24-2010, 11:01 PM #2
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Default Hannah...there is hope!

Dear Daililyfan;

I am unbelievably impressed. You have put a tremendous amount of your energy, skills, thoughts and love into something you have passion for and what a great accomplishment!!! Thank you for sharing this with us. I have been training my husband for 28 years and do not get that type of service. Any suggestions? Maybe I will start with the vest, I love to sew. Honestly, your story has inspired me. God Bless you and Josie!

Jeanie
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Old 07-25-2010, 07:09 AM #3
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I'm quite impressed as well. This is something my husband and I have been discussing for several months. We would dearly love to be able to get a service dog but as you mentioned, it's terribly cost prohibitive.

I've looked into several of the online agencies who provide dogs, but we've not qualified for one reason or the other. Still, it's worthwhile for us to keep looking and we have.

I've fallen out of my wheelchair a couple of times and I think of how beneficial this could be if we could somehow train a dog to help me back into my chair rather than my having to wait for assistance.

I'd love to hear more about your story!
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Old 07-25-2010, 02:32 PM #4
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daylilyfan.....it is funny you posted about this bc i have been starting to research this myself. I have an 8 year-old female golden retriever. Since when I got her at 7weeks, she has always been EXTREMELY gentle & well-mannered w/ very little training. She did take obedience training classes about 2 years ago. I take her w/ me everywhere I can. I'm interested in making her a service dog. It is really scary how smart she is how much she thinks about things. I would love for her to help me w/ the RSD (in R foot, R arm, stomach, & heart). However, I also have bipolar & bad anxiety. When I have her with me, I feel so much less anxious, which in turn helps w/ my pain. I have heard I could make her a service dog for even the anxity alone. Where do I start w/ this process? Any info u have would be greatly appreciated!!! Take care & thanks for posting this!!!!!
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Old 07-25-2010, 02:36 PM #5
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Default A challenge for you

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Originally Posted by peppermintpatty View Post
I'm quite impressed as well. This is something my husband and I have been discussing for several months. We would dearly love to be able to get a service dog but as you mentioned, it's terribly cost prohibitive.

I've looked into several of the online agencies who provide dogs, but we've not qualified for one reason or the other. Still, it's worthwhile for us to keep looking and we have.

I've fallen out of my wheelchair a couple of times and I think of how beneficial this could be if we could somehow train a dog to help me back into my chair rather than my having to wait for assistance.

I'd love to hear more about your story!
Dear Peppermint;

Possibly, you could get a dog on your own and train yourself. When I first had my accident I spent almost two years in a wheelchair. Our dog was killed in the accident. My parents bought us a new puppy, she was so healing to our lives. I had her housebroke in two days on my own. Then a few months later the kids talked me into a rescue dog, lab/counhound, again I trained both of these dogs out of a wheelchair. Maybe this would be something for you to consider and look at the gratification and end result that Daililyfan has shared and accomplished. I fought my way out of a wheelchair many times, as I sustained severe open fractures to both of my feet. But I never accepted living my life in a wheelchair, even though I was told early on, my prognosis was scary. I began to crawl, I crawled all over the house with knee pads, but I got where I wanted to go and was able to do things for myself. Even most recently, sustained another total arthrodesis/fusion and nerve surgery. I came home in a wheelchair, but, again I started to crawl with both of my feet lifted in the air behind me. The pain was horrible, everything hurt, both arms and shoulders flared up, I was a flipping mess. But three months later, I am walking, slow, but I am walking. Don't give up, just challenge yourself in little ways each day. Get some knowledge about training a dog for special needs, go find the perfect dog for you and give it a shot, you have nothing to lose, if all else fails you will have a great companion. My dogs are not trained for special needs, they are older now, but they have this incredible sixth sense about them and somehow always manage to comfort me and have gotten me through some really difficult days. God Bless you Peppermint, don't let your limitations get in the way of your dreams and never accept or give up on walking again!

Jeanie
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Old 07-25-2010, 06:15 PM #6
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I am trying my darndest to get the last part of the Symptom Report finished tonight for SS Disability. I have had it for weeks. Yikes. Anyway, I will check back in here in a couple days and answer everyone.

I am glad that people enjoyed the post. I wanted to open people's eyes to what a dog can do for you, but also that it's not an easy street.

Jules
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Old 07-25-2010, 06:33 PM #7
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Here is a link to some YouTube videos. The woman in these videos is disabled, and uses a power chair. Her dog, Laurel, is owner trained. Linda not only trained Laurel for service dog work, but she also competes in obedience, and dog agility. She started the Service Dog club that I belong to.

http://www.youtube.com/user/lkalberda#g/u

You can absolutely train a dog from a chair.

Linda has RSD, MS, and several other conditions. There are times when several days go by and all that she and Laurel do is stay in bed together. Other times, she feels better and they go eat out, run errands etc. Linda recently got a new puppy to train. Laurel is 5 and since it takes a couple years to train a service dog - especially for chair work for someone not as mobile as I am - she is starting him now. Most Goldens and Labs retire about age 8 or 9... and, Linda needs a dog for medical alert 24 hours a day. With two dogs, each one can have some down time while the other is working.

Last edited by daylilyfan; 07-25-2010 at 06:38 PM. Reason: additional info
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Old 07-26-2010, 10:14 PM #8
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Quote:
Originally Posted by daylilyfan View Post
Here is a link to some YouTube videos. The woman in these videos is disabled, and uses a power chair. Her dog, Laurel, is owner trained. Linda not only trained Laurel for service dog work, but she also competes in obedience, and dog agility. She started the Service Dog club that I belong to.

http://www.youtube.com/user/lkalberda#g/u

You can absolutely train a dog from a chair.

Linda has RSD, MS, and several other conditions. There are times when several days go by and all that she and Laurel do is stay in bed together. Other times, she feels better and they go eat out, run errands etc. Linda recently got a new puppy to train. Laurel is 5 and since it takes a couple years to train a service dog - especially for chair work for someone not as mobile as I am - she is starting him now. Most Goldens and Labs retire about age 8 or 9... and, Linda needs a dog for medical alert 24 hours a day. With two dogs, each one can have some down time while the other is working.
I am very, very intrigued by this. However, I have hit upon a stumbling block. We absolutely cannot even come close to affording the tens of thousands to purchase and train a service dog. I've looked at the nonprofits that will adopt dogs out for a lower cost but they want homes without other pets in them. We have two ten year old dogs that I'm absolutely not willing to part with; it would tear our family apart, for one thing, and would no doubt break our dogs' hearts as well. They are both rescues and have been with our family since 2001.

And finally, while I really love the idea of training a dog myself, we have a limit of two pets per family here in our military base housing. We have already checked with the housing office and a service pet would be excluded from that count, but a dog that we adopted and began training ourselves would not. Everything I've read states that the dogs that we have are too old to be service dogs.

Does anyone have any suggestions for me or ideas that I'm just not thinking of right now? Thank you so much. I really think a service dog would be ideal for me, given our family's love of animals and my mobility issues.
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Old 07-27-2010, 07:09 AM #9
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If you cannot afford to pay for a SD (Service Dog)... and I don't think many people can... training yourself may be the only option. I do know that some people do fund raisers to get the money for a SD. I have attended several of them. One lady is a student at our local university. She has a friend that has organized car washes, bake sales, dog washes at at a local pet store for example. Often, if you belong to a church, that is a way to raise money.

True that the dog can't count in your # of animals - but it has to be a service dog, not in training.

I am not sure what tasks you would need, but even though 10 is old for a SD, old dogs CAN learn. You could teach your dogs you have now to pick up things for you, close drawers etc (depending on their size). It would give you some help, plus some experience training.

Have you actually contacted the service dog organization in person to verify that they won't place dogs into homes with other pets? I ask, because many of the people on the service dog forums have multiple dogs, and they have program trained SD.

I'll PM a couple forums to you - if you join there, you might be able to get some more suggestions. There are many SD trainers on the forums, from all over the country.
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Old 07-27-2010, 07:17 AM #10
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Thank you so much! I'm really excited about this. I have done basic training (the PetSmart type) with both of my dogs, so I'm familiar with it, but not sure how I'd go about it in a wheelchair. I may call our old trainer to see if she can give me some tips.
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