Snickers the Shoplifter

I really hope I don’t find Snickers on America’s most wanted. Snickers accompanies Judi, his partner, everywhere. She told me that the other day, when she and Snickers were loading the car in the Walmart parking lot, after Snickers dutifully jumped into the car, she proceeded to fold her walker and load it.

Out of the shopping basket fell a hat, some shampoo, and some conditioner. Snickers, it seemed, went on a buying spree of his own. The only problem was that Snickers had neither money nor a credit card. 

Judi was mortified and didn’t know what to do. Fortunately, there was a Walmart employee walking by, so she tried to explain Snickers’ transgressions and asked if she could return the items for her. 

The long arm of the law didn’t even get involved.

Service Dogs & the Military

Here’s a really useful and informative article on Service Dogs. 

Check out their descriptions and interpretations of the ADA Laws.

This is especially helpful to former and current members of the military, but we all can learn from it.

Scroll to the bottom of the page for some really useful links.

To Smoke or Not to Smoke, What a Stupid Question

I found this link on my Facebook feed this morning and decided to mount my favorite, albeit very worn soapbox. Believe it or not, I have never, no, not ever, held a lit cigarette in my hand. No, I’m not some sort of angel, I just hated my mother for making me wash her stinky filthy ashtrays.

Watching old movies, the ones I love, the ones from the forties and fifties, I now understand, sort of, why my beautiful, savvy mother smoked. It was sexy and made her look smart and modern.    

They even smoked in my very favorite Breakfast at Tiffany’s, the movie I watched three times a few months ago in preparation for a bridal shower that I was supposed to attend looking like Holly. The frustration factor of trying to turn my curly blond senior self into Audrey Hepburn would have been awful even thirty years ago, but…

Our super clean house (my crazy mother made me dust the furniture in the morning before we left for each vacation) really smelled bad but, fortunately, the smelly smoke doesn’t come through when I watch old movies. In addition to my mother’s cigarettes, Marlboro, I think, my father smoked cigars. Yuck.

When my daughter Elisabeth was very small, I remember her saying to my mother as she smoked, “Nanny, you’re going to die tomorrow.” I guess I got through to her. Fortunately, none of my children smoked, so I may have gotten through to all of them. If you ask my son why he never took up drugs, his interesting answer “I was afraid of liking them.”

My mother did eventually quit smoking cigarettes and my father quit smoking cigars. One day my brother in law, who was a pediatrician and lived two doors from my parents, arrived at my parents’ house and ceremoniously placed on my mother’s kitchen table a jar containing a lung from a patient who had died of lung cancer.  That was all it took.

The cigars took a bribe. My father quit smoking cigars after my mother gave up drinking scotch.

It sounds like I grew up in a dysfunctional family. No, they weren’t drunks or addicts. My mother only drank at social events and wasn’t even a chain smoker. My father’s cigars only came out during his weekly card games. The cigar smell drove my mother so crazy that one night she collected every alarm clock she could and set each one a minute apart, starting at 11 PM, hiding them in drawers, under pillows, under furniture, just enough to drive my father and his friends crazy. How long it took her to amass the ten or so alarm clocks, I have no idea, but the story made the rounds of our town for years.

Finally, Some Attention from Big Pharma

We have been contacted by Merck to provide information about service dogs and how they relate to Multiple Sclerosis.  This is what we have been waiting for.  We need to get the drug companies to acknowledge that there are treatments beyond their medications and get behind our efforts.

Treating MS isn’t simple.  “It takes a village,” as Hillary Clinton once said about educating children.  Treatment options certainly revolve around mainstream medications but there are ways to cope with MS that are beyond the medications. 

Partnering with a service dog changes the life of the MS patient.  MS is part of the life of the patient for a very long time and enhancing quality of life is of paramount importance.

Service Dogs Rock!

Service Dog Humor--Not So Much

This video was posted a few years ago, but I just found it.

It’s so difficult for the partner of a service dog to eliminate distractions and convince the public that the beautiful creature in the vest isn’t just a pet and, while working, shouldn’t be approached without permission.  

One person with MS, who relies on her service dog, described her solution.  She has three sons and, if they are available, she takes them with her when she and her dog go out in public.  One walks ahead of the dog and the other two walk at her sides. This may sound extreme, but it illustrates a common problem.

Another of my MS friends has a problem of interaction between her dog and her family.  Everyone wants to love the dog and treat him as a pet.  The solution is fairly simple: when the dog is dressed for work, leave him alone.  Otherwise, love him and play with him.  When she complained to me, all I could say was “think about how much worse it would be if your husband didn’t like the dog.”

Working with service dogs isn’t always straightforward and easy, but is so worth it.  Each human partner must figure out what works.  Sometimes a smile and a warning are enough.  Explain to the offender that the dog is working and can’t be distracted.  The more people we encounter and educate, the better it will be for the service dog community.

Service Dog Partners, Make Some Noise

Just thinking:  I have been reading several discussions about service dogs and their human partners being harassed and denied access to public places.  Their heartache and disappointment have made me want to cry.

I know, according to the ADA, you are not required to show any documentation or prove anything to anyone, but, according to the sad stories I've been reading, clearly, life would be easier if the legal status of the dog could be demonstrated.

Recently I had a discussion with the proprietor of my favorite U Pick It site about the work I’m doing with service dogs.  She (and she’s not stupid) said she had recently turned someone with a service dog away because “The fruits and vegetables are meant to be eaten.”  When I corrected her, she was visibly upset—she had been totally unaware of the regulations. I know she’ll never again turn a service dog away.

Isn’t it possible for the service dog community to come up with a simple form, card, or document to present to the uncooperative person. There is no reason to share a medical diagnosis, just the statement that you are entitled by law to be accompanied by a service dog and the simple phrase “the service dog has been determined to be medically necessary.”

Also, arm yourself with the name and phone number of the local police precinct so your opposition will see that you are serious.

The good news is that service dogs, at least here in Florida, have been receiving some positive press. 

Following is a link to a letter to the editor of the Miami Herald that I wrote and the paper printed. (Mine is the second letter.)

http://www.miamiherald.com/2011/ http://www.miamiherald.com/2011/04/16/2169608/camera-shy.html

 04/16/2169608/camera-shy.html

Additionally, an article appeared in the Sun Sentinel.

I linked the article and my commentary in another post on this blog.

http://msbeyondmeds.blogspot.com/2011/07/article-and-my-comment-on-service-dogs.html

It’s time to be proactive and, as they say at Miami Heat games, “Stand up and make some noise.”  Write letters to your local newspaper. Contact your local radio and TV stations.  The topic has come of age and the papers and media are paying attention.  We must keep the hammer on them.

Self-Trained Service Dogs

This will be a very short post from me because I’m looking for input from the service dog world.

Although our research with service dogs for MS will include only professionally trained dogs because we have to keep our focus narrow, I know many people have successfully trained their own dogs.  Every day I get questions about self-training, but have no frame of reference.

There are many reasons to train your own dog: You could live too far away from a provider, you might have been on a waiting list forever, you may be really good with dogs and feel confident that you can do it, you are having trouble raising the funds…

Please, if you have experiences, either positive or negative, add your voice to this.  Thanks to all.  I’m looking forward to hearing from you.

These plants are dangerous to dogs

Following is a list of plants that are dangerous to dogs that we all should be familiar with.  (Thank you Assistance Dogs @ Yahoo Groups)

Autumn crocus (Colchicum): Its active ingredient, colchicines, triggers an anti-metabolic effect that can cause rapidly dividing cells, shedding of the gastrointestinal tract, bloody diarrhea, and vomiting.

Azalea (Rhododendron): This popular plant can harm a dog's cardiovascular system and trigger vomiting or gastrointestinal upset.
 

Daffodil (Narcissus): Toxic ingredients in the bulbs cause convulsions, tremors, lethargy, weakness, and upset stomachs.

Hyacinth (Hyacinth): This popular plant can cause severe vomiting, bloody diarrhea, depression, and tremors.

Japanese yew (Taxis): Extremely toxic to dogs, this group of ornamental plants can cause seizures or cardiac failure. The plant and red berries are toxic.

Lily of the valley (Convalaria): This plant can cause heart failure, coordination problems, and vomiting.
 

Oleander (Nerium): Extremely toxic, this popular outdoor plant contains cardiac glycosides that harm the heart, decrease body temperature, cause abnormal pulse rate, and can cause death. Beware: Even people have died from eating hot dogs roasted on an oleander twig.

Rhubarb (Rheum): Although the stalks are used to make pies, the leaves pack the potential to cause kidney damage.

Sago palm (Cycads): Resembling an upside down pineapple, this plant thrives in sandy soils, especially in warmer states such as California, Texas, and Florida. A few seeds can kill a dog.

Tomato (Lycopersicion): Surprisingly, the greenery of this common plant, not the tomato itself, contains solanine, a toxic ingredient that can prompt gastric upset, depression, weakness, and a decrease in heart rate.

Regarding Cough Medicine for MS

My Comment on the Article

I found the article on your Cough Medicine/MS study interesting and exciting.  One ingredient in the cough medicine, dextromethorphan, is the component that the research was based on.  However, I fear that people with MS will start drinking cough medicine. ("Drinking" is the operative word because some cough medicines contain alcohol.)  I've been working on a project with MS patients focusing on service dogs and their effects on the quality of life of MS patients, and have met and communicated with many people with MS. One of the common threads that I have found is a willingness to try any treatment regardless of warnings, dangers and side effects.  This article should have contained information on whether MS patients could safely try dextromethorphan and how to do it.  I fear that there are other ingredients in some cough medicines that may interfere with the effectiveness of other medications.

Article on Service Dogs from the Sun Sentinel With my Comment

By Karen Ravn, Special to the Los Angeles Times

July 18, 2011

One moment 15-year-old Glen Gregos was a happy-go-lucky kid riding a motorcycle. The next he was the lucky-to-be-alive victim of a terrible accident, paralyzed from the chest down.

Now 54 and a resident of Woodland Hills, Gregos has built a rewarding life — college.
Still, for decades after the accident, Gregos faced challenges every day from simple things most of us take for granted — going to the grocery store, going out the front door. And then six years ago, his life took another dramatic turn. He met Beulah — a.k.a. Miss Bo — a black Labrador retriever who has been at his side, 24/7, ever since — to open doors, carry bags, pull his wheelchair, pick up anything he drops on the floor and cheer up any black mood he falls into.

"It's hard to put into words everything these dogs do for you," he says. "It's physical. It's emotional. It's all-encompassing. You probably have to live it to understand it."

Miss Bo is not considered a pet. She's a service dog, a concept first introduced with guide (or seeing-eye) dogs for the blind, perhaps as far back as the 16th century, though it wasn't until 1929 that the first guide dog training school in the U.S. opened up. By the 1970s, people had started training dogs to help with other disabilities, and that trend has continued.

Service dogs now include dogs that can open cupboards and drawers, alert someone to a ringing telephone, assist someone during a disorienting seizure, help someone keep their balance or get back up after a fall, not to mention dogs that can sniff allergens in the air or low blood sugar on someone's breath.

"Here in the U.S. we have a highly individualistic culture — creative, experimental," says Lynette Hart, director of the Center for Animals in Society at UC Davis. "It's like a caldron for coming up with new things that dogs can do for us. And dogs love to work. It's a very natural marriage for them to help people."

This has been a boon for many who, like Gregos, have had their lives changed by some extraordinary dogs. But potential pitfalls abound. "There's almost no regulation," Hart says. "And everyone wants to do what they want to do."

Sometimes people want to call their dogs service dogs even though they're really not. And sometimes people want to believe dogs can do things even though there's no real proof they can.

Many dogs have a natural knack for providing comfort, companionship and emotional support to their people, who often consider that a pretty big service. But it doesn't make those dogs service dogs. Neither does a capacity for warding off crime by looking or sounding formidable. According to the 1990 Americans With Disabilities Act and new regulations put in place in March, a service dog must be trained to perform a service for a person with a disability that is directly related to the person's disability — turning lights on and off for someone who's paralyzed, for example, or alerting someone who's deaf that a smoke alarm is blaring.

Many organizations train one or more kinds of service dogs, and in general their programs follow a pattern set by the early guide dog training organizations: careful breeding followed by puppy-raising by volunteers who begin the basics of obedience and socialization, and finally intensive training by professionals. (Potential human recipients also are carefully screened, trained and matched to dogs.)

Guide Dogs for the Blind, the first guide dog training school on the West Coast, relies solely on Labrador retrievers, golden retrievers and crosses of the two. Training organizations for other types of service dogs often do too. "They have wonderful temperaments," says Katie Malatino, public relations coordinator for one such organization, Canine Companions for Independence, headquartered in Santa Rosa. "They're a good size for the tasks they have to do, and they have an instinct to retrieve, which comes in handy for picking things up off the floor."

Canine Companions for Independence provided Miss Bo to Gregos in November 2005. These days she is always on call if Gregos needs her, which is not to say that she never has any fun. "She has toys," he says. "We play ball. But once she gets vested up" — wearing the vest that identifies her as a service dog — "she knows, 'OK, I'm ready to work.' " (And people who see the vest should should know and respect that too.)

Like any good service dog, when she's working, Miss Bo is unperturbed by loud or unexpected noises ("bomb proof," Malatino calls it) and undistracted by other animals or people — unless Gregos gives her special dispensation. Which he often does.

"I put her in a 'sit' and let people pet her," he says. "I want to create more awareness about these special dogs. I wasn't aware of them myself for a long time. I'd think, 'What can a dog do for a guy in a wheelchair?' "

The Americans With Disabilities Act says service dogs get to go wherever their people go: grocery stores, restaurants, libraries, amusement parks, boats, buses, trains, planes and no-pets-allowed hotels. New regulations issued this spring establish two exceptions (which would surely never apply to Miss Bo): Service dogs can be banished if they get out of control or if they transact certain business indoors that should have been seen to outside.

Not everyone knows the rules. Gregos once spent several hours convincing officials at a hotel with a no-pets policy that they were obligated to let Miss Bo in. "One side of me thought, 'I don't want to stay here anyway,'" he says. "But the other part thought, 'They've got to be educated.' "

Even beyond the issue of ignorance, service dog use is not without controversy. One problem is cheaters.

"A lot of people try to skirt the system," Gregos says. "I see it all the time." Some will claim that their pet dogs are service dogs that help them with disabilities they don't really have — and they can get away with that, because the law doesn't require people to present proof of their own disability or their dog's capacity to deal with it. (It doesn't help that service dog vests are readily available online.) Proprietors may deny entrance to dogs that arouse their skepticism, and that's fine if they're right. If they're wrong, it can lead to a fine of a very different kind.

Copyright © 2011, Los Angeles Times

Comments--jgruskin at 8:44 PM July 18, 2011 

Finally, the world is awakening and offering service dogs some respect.  Thank you for your article.

We are working on a research project to demonstrate the effects of service dogs on the quality of life of MS patients.  We intend to prove with both qualitative and quantitative research methods that service dogs not only improve lives but contribute to a reduction in medical costs.

We began this project in January of this year, put up a website, established ourselves on Facebook, and have been extremely gratified with the quantity and quality of the responses. Our next step is to obtain funding for our research.

Through our work, which we intend to expand to include additional neurological diseases, we will finally convince both patients and providers that service dogs are the answer to a multitude of problems. You would be amazed at what these dogs can accomplish.

If you are interested in learning more about service dogs, check out our website www.msbeyondmeds.com and visit us on Facebook at MS Beyond Meds. We really look forward to changing the way the world views and reacts to these unbelievable animals.

Brass and Ivory: Life with MS & RA: Must Have Coffee

Brass and Ivory: Life with MS & RA: Must Have Coffee

My coffee rant is the 6th comment.

Service Paws--our radio show with Amy Gurowitz

Listen to our radio show with Amy Gurowitz of MS Softserve.

.

One person's description of life with her service dog

From Brenda:

"Liberty is my angel. She is my support when I am having a tough day, and my strength, to continue going. She is the light that makes my household laugh, when the darkness clouds over, she is the security to me for I never walk alone, and to my sons, for the worry is less for them for they know she is by my side. She is my drive to stay independent, and my motivation when I don’t feel like moving."

 Please join our discussion and tell us about life with your service dog.

About.com about MS and Us

Check out what they wrote about us on About.com: 

“In fact, an organization called msbeyondmeds was started by a mother and daughter team who want to "open a dialogue" among people with MS, our docs and those close to us about the benefits of service dogs. They also want to improve access to these dogs by convincing government agencies and insurance companies that service dogs really do improve the quality of life of people with MS. Check out their website for all sorts of service dog info.”

And my reply:

I can't thank you enough for recognizing our work and mentioning us. First and foremost, we love dogs. Neither Liz nor I has been without a dog for more than a few months at a time. When Liz and her sister and brother were growing up, we always had 3 Dobermans at a time--3 kids in 4 years, 3 dogs, what a crazy house we lived in.

We know that having a dog contributes immeasurably to your quality of life, whether you have MS or not. We're focusing on specially trained service dogs because they can do so much more for the person with MS. Check out or website msbeyondmeds.com or find us on Facebook at MS Beyond Meds. You'll gain a new understanding of how much service dogs really can do.

Specifically, we are planning a research project to prove that service dogs enhance the quality of life for MS patients. (Liz is a medical researcher, having done both qualitative and quantitative research for 20 years.) We want the results of our research to influence the medical community and providers of medical insurance. With real numbers, we know we can achieve our goals.

Dogs rock!

Joanne Gruskin

Conversations with Marc, the Wheelchair Kamikaze

March 12, 2011~~To Marc

Hi Marc,

I was so fortunate to have found Amy Gurowitz and she suggested that you I tell you about our project.  You can get some idea by checking out our website: www.msbeyondmeds.com. The whole thing is a work in progress since I have never put together a website and blog and am new to Facebook, but it will all come together. Here is the wordy explanation:

My daughter Elisabeth is a medical researcher, having been awarded grants to do quantitative and qualitative analysis of issues regarding public health.  She recently met a woman who trains service dogs for several applications including multiple sclerosis, PTSD, autism and the mental and physical disabilities. Elisabeth had interacted with several people with MS, most of whom were not aware of the positive contributions service dogs can make toward improving their quality of life.  Since I have worked with her in the past, helping write her grant applications, PhD thesis, and a book, she asked me to work with her. We had been studying the symptoms and effects of MS and met a woman from the Orlando area who trains and places service dogs. When she was ready to pair two MS patients with service dogs, she invited us to join her “boot camp” to observe the contributions of the dogs to their partners. We spent the last two weeks in February observing the interactions and are totally convinced that we must raise awareness among the general public that service dogs are more than just seeing-eye dogs.  The effects of the pairing of the dogs with their partners were astounding.  The dogs guide wheelchairs, help prevent falls, open doors, press elevator buttons, retrieve dropped objects, turn on lights, and, perhaps most encouraging, contribute to improving the mood and eliminating the isolation experienced by the physically challenged.  With the service dogs, MS patients can get around by themselves and experience the independence that their illness destroyed. I spoke to one of the participants a day after she arrived home and she said that for the first time in years, she awakened happy and eager to get on with her day.  She hadn’t even realized that she had been suffering from depression as a result of her MS. 

Elisabeth and I ultimately intend apply for a grant to conduct a research project to prove that there is a significant improvement to the quality of life for MS patients as a result of their partnering with service dogs.  Since the grant process takes so long, we have decided first to write a book to chronicle the lives of some of the people and their dogs.  That way we will be able to raise awareness and get the word out more efficiently. We have enlisted the aid of the Multiple Sclerosis Center of Excellence at the University of Miami to contribute to our research project.  Liz has established a contact at Stanford and is going to see them next week.  In addition, she hopes to get to UCSF.  Our ultimate aim is to prove that service dogs, by helping their partners, preventing falls, and improving their mood can reduce medical expenses. Medical insurance companies will save money and must cover some of the costs.  At this point, I am eager to make as many contacts as possible to spread the word.  Amy thought you might be helpful. I have a link to Stu’s MS Views and News on my website and would like to link yours also.  I couldn’t find any reference to service dogs on your blog and know your readers would benefit from our experiences.  Let me know whether you think we could do some work together.

Best regards,

Joanne

March 14, 2011 ~~From Marc

Hi Joanne,

I received your follow-up e-mail earlier today, and I hope you'll understand that I get an overwhelming amount of e-mail, so much so that it's impossible for me to answer most of them on the day they arrive. I often wind up with a backlog of sometimes a week or so, and as my blog astonishingly continues to gain in popularity, at some point I'm going to have to figure out a way to politely curtail the e-mail load, because answering them all is starting to take several hours each day.

Anyway, those are my problems, not yours.

I absolutely support what you're doing in regard to service dogs for MS patients. I'm surprised that you're finding so many are unaware of the potential of service dogs, as many of the Internet forums I frequent have members who have and love service dogs. I myself am a dog lover, and one of the best friends I've ever had was a yellow Labrador named Stella, who passed away in 2006. She wasn't a service dog, but saw me through my first few years of having MS, and was so empathetic that she developed autoimmune diseases of her own. There were several periods during which we were taking the same medications. It was almost spooky. Here's a blog post I wrote about her:

http://www.wheelchairkamikaze.com/2010/01/remembering-stella.html

I will certainly feature your website in an upcoming Wheelchair Kamikaze blog post, and extol the virtues of service dogs for MS patients. After Stella passed away, we looked into getting me a service dog, but found that most agencies won't give dogs to patients with Primary Progressive Multiple Sclerosis, because most don't remain mobile long enough to cover the lifespan of the dog, and they won't give dogs to patients who will have to give them up before it's time for the dog to retire. Not happy news, for sure, but it is the unfortunate reality of PPMS.

That said, I'm really not in any shape to take care of a dog, and since my wife works full time and has her hands full with me, it wouldn't be fair to expect her to take on the added responsibility of having a helper pooch, even though she would love another dog as much as I would. We also live in a pet free building, and although I know ADA laws require them to allow service dogs, management could make things uncomfortable for us.

Not this is all about me, just thought I'd explain my situation since I'm an avowed dog lover, and if ever a treatment is found for my disease I fully plan on moving to a dog friendly environment and enjoying the company of a pack of very large canine companions.

Regarding posting a link to your site on my site, I really don't link to any outside sites from my blog, except when they are highlighted in a blog post. It's more of a design choice than anything else, as the site is already too cluttered for my taste. I also wouldn't want to set the precedent of linking to outside sites, as many have requested before and if I linked to one I'd be hard-pressed to say no to others. There are certainly many websites worthy of inclusion were I ever able to find space to fit them. As I mentioned, I will definitely highlight your organization in an upcoming post, but really can't commit to putting anything permanent on my site.

Please do keep up the good work, though, and if I can assist in any other way, just ask. I'll try to do a write up on your organization within the next couple of weeks.

Best

Marc

March 15, 2011~~To Marc

Marc,

I haven’t found many on internet forums who have service dogs. One of my main problems is convincing people that the service dogs are not pets—they work. Their value is in what they can do for you. One of the people we have been working with has MS, is confined to a wheelchair, cannot walk at all, and has found that the dog enables him to live an independent life. His wife’s biggest fear was that he would lose his balance and fall into the pool when she was at work. She now knows the dog will be there for him.

I have been following your blog and am curious as to whether any of your readers will respond to your post about the dogs. I think there are fewer people than you think who understand the potential of service dogs for the MS community.

I love your spirit and fearless attitude. One thing I have found is that the people who do partner with a service dog are high spirited and think positively. One of the women who participated in our boot camp, though she didn’t have MS, was an inspiration. She had lost both of her legs to gangrene from PAD and needed help in addition to her husband. You have no idea how far she came and how her personality came through during the two weeks we spent with her.

Anything you can do to help us publicize our work will be appreciated. We are looking for people who might be interested in the dogs for themselves or have had experiences with service dogs. My ultimate goal is to prove with our research that service dogs help so much that they can reduce medical costs. I intend to do all I can to get insurance companies to cover the dogs. Fighting medical insurers is my soapbox.

I’ll continue to follow your blog and hope to help.

Joanne

March 18, 2011~~From Marc

Just wanted to tell you that I put the link to your site in the blog post I put up last night. Hope it helps…

March 19, 2011~~To Marc

Thanks, Marc.

This effort is sure to help the MS community.

Also—Florida isn’t so bad. We moved here from NYC 20 years ago and never looked back. The only thing I miss is the theater. We lived in Manhattan, chose the nastiest days to get our half priced tickets and never missed a show. After the first show we saw in Florida, instinct had me reaching under my seat for my foul weather gear. See, it isn’t the same without snow and ice.

Last time we were in NY we acted like tourists—took the tour bus. Try it if you haven’t already. The problem with most native New Yorkers is that they don’t know how to be tourists. It’s fun.

Have a good weekend. It’s 78 degrees and sunny here and we are in our motor home near Zoomiami. We will make our weekly visit to the zoo tomorrow so I can take some more pictures. Some of my recent ones are on my Facebook page.

Best,

Joanne

March 19, 2011~~From Marc

Hi Joanne,

I know I seem especially hard on Florida, but I'm really just not a Florida kind of guy. I did live there for almost 10 years, but felt like a stranger in a strange land for the majority of that time. An odd set of circumstances led me to live in Florida, as I really only expected to be down there for three or four weeks recovering from some surgery at my mom’s house. At the time, I was directionless, and I was able to start my career in Florida, and for that I am grateful. If I'd have left after about five years, my Florida experience would have been a net positive. Unfortunately, the last five years I spent in Florida were my last five truly healthy years, and I'm certain they would have been better spent in an environment more suited to my nature.

I'll have to take a look at your Facebook page to see your animal shots, as I'm a big animal lover.

Give my regards to the Sunshine State…

Best

Marc

March 19, 2011~~To Marc

I love talking to you.

Today I photographed fruits, veggies, and flowers. (A Florida activity).

We spend part of our Saturday picking and eating strawberries, tomatoes, & greens—glad I’m not a picker—hard work—and they complain about the illegals doing the picking.

I’m a love it now person. Loved living in NYC, loved living on Long Island (right on the beach) and now I love Miami. What’s next???

Keep up the positives.

Joanne

June 20, 2011~~To Marc

Marc,

Saturday, June 18: Not much time to write now--morphine has rendered me stupid and dopey. When we were in Montreal for the CMSC conference, I tripped and fell in Chinatown and broke my pelvis. I'd like to think that things happen for a reason, but this pain I wouldn't wish on anyone.

Now I know what it's like to be a non-person, to listen as conversations surround you, to be relegated to the pity party. Things sure look different when you have to assess butt cracks because that's all you can see.

Fortunately, my daughter Liz, my partner in crime in Montreal, stayed on for an extra week--thought we'd get some work done, but it didn't happen.

Monday, June 20: No morphine since yesterday, so I feel like I have regained a semi-brain. My husband leaves very early and comes home by 4:30, so I convinced him to leave me home alone. I can only sit up at the computer for a short time, then have to get off my rear end.

After we rearranged everything in the house so I can get around by wheelchair, I've been able to go from kitchen to bathroom to living room to my office, only getting stuck a few times.

ADA, where were you when you let them build this house? Doorways--too narrow, hallways--too narrow, bathrooms--too small, kitchen--thankfully large enough to manipulate (but I designed it in what used to be a bedroom).

Now I'm learning what it's really like to live in a wheelchair. I'm all excited because my husband promised to take me out to Costco this afternoon. He has to walk me along with the dog, feed the birds, do the laundry, figure out what we're hungry for and how to prepare it, and in general act as the live-in nurse. Don't think he likes the nursing stuff but I think he's beginning to appreciate what I really contribute to the mix.

Fortunately, this should heal eventually and I'll be able to get around again. As long as I can live without morphine, I'm happy--hate to feel drugged.

What I wouldn’t do for a service dog...

Time to find my way back to sit on something soft.

Best regards,

Joanne

June 26, 2011~~From Marc

Hi Joanne,

Sorry for the delayed response, I had some IVIG treatments last week, and as usual they left me with a few days of fevers. Not much fun, but the treatments do seem to be helping a bit.

I'm so sorry to hear about your accident. I'm sure having a broken pelvis must be incredibly painful, and I do hope that your recovery will be quick. I hope your experience doesn't sour you on Montréal, which is one of my favorite cities. Then again, I never tripped and broke my pelvis there…

I know exactly what you mean about being on painkillers, unfortunately I need to be on them almost constantly, because my hips have been destroyed by a condition known as Avascular Necrosis, which was brought on by the steroids used to try to control my MS. Basically, for reasons unknown, the steroids cause the bones in your major joints to die, so I'm basically getting around with the equivalent of two broken hips. If I were healthier, I'd already have had to hip replacements, but because of my MS debilitated body, I wouldn't be able to recover properly from the surgery, so I'm stuck with nearly constant pain. Talk about icing on the cake…

It is quite the experience being in a wheelchair, isn't it? I must say, I hate being stuck in the manual wheelchair, being pushed around and totally at the mercy of the person doing the driving. The experience of being in a power wheelchair is much more pleasant, as I can travel at nearly 3 times the speed of a walking person, so in effect it almost gives me some superpowers. You're absolutely right about the view, though, it's nothing but posteriors. It's not so bad in the summer, though, with all of the pretty women walking around the city in their little sundresses :-)

I do hope you're feeling better, and please keep in touch…

Best

Marc

June 26, 2011~~To Marc

Good morning, Marc,

I'm very patient when awaiting your replies, as I know you will have so much to say and say it in such an interesting way.

From your description of your pain I feel like a wimp, although they say a broken pelvis is the worst. The good news is that every day brings some improvement--I hate being dependent on others--it's not my style.

I stopped taking morphine and have been able to survive on Advil and Aleve. I also sit on a pillow with an ice blanket. Would ice help you? We bought the ice things made by Techni Ice, an Australian company, at a boat show. They absorb water, expand like a quilt, and you freeze them. I'm never far from my ice and have found that it helps.

My biggest problem now is that I am totally miserable in my own bed and have been sleeping on the living room sofa with the TV blaring. We have a tempur-pedic mattress, but it hasn't helped. Every night I start out in bed with my husband, where I belong. By 1 AM I have migrated via my very noisy walker and wheelchair to the living room. I guess I shouldn't complain. At least I've found a place where I can sleep.

Not to worry, I still love Montreal. Maybe they should check out the sidewalks in Chinatown, but NY is probably worse. Have you tried to navigate in Chinatown in NY? It's mind boggling that the world isn't wheelchair friendly. I never appreciated the issues in NY until I watched your videos.

I think, though, that Washington DC may be the worst. DC is the city of steps. Last year we had to deal with a wheelchair on a trip to DC with our son and his family. He suffered an acute gout attack and couldn't move without a chair. He's not a complainer, but, a few years ago, he called us from his hotel room in the airport in Orlando and said he couldn't get to the plane, hard to believe, since he was already at the airport. So we drove up to pick him up.

Yuck, pain is the worst.

The wheelchair has been really helpful, but this weekend, which we spent in our motor home at our favorite place, the Miami-Dade county park that backs on Zoomiami, the tree roots hampered progress. The camp is in a mango and litchi grove and, as I sat in my chair and caught the litchis that my husband tossed down to me from his ladder in the trees, I really didn't appreciate how hard he was working. Fortunately, he's a good sport and helped me get around under the trees, making sure I was in the shade.

Doesn't hearing about mangoes and litchis make you miss Florida? No, I guess not, you can go to Chinatown and get your litchis the easy, albeit more expensive, way--if you can drive your chair in Chinatown.

OK, this has been fun, but I'd better get some work done. So far I've done nothing to review the information we picked up at CMSC and share the most salient points. One study I found interesting was one that determined that MS patients should not drink red wine. I can't drink red wine either because of migraine headaches and wonder if brain disorders, of which migraine is one, have commonality. So much left to explore.

Be well and keep in touch. I love hearing from you.

Best,

Joanne

www.msbeyondmeds.com (I just read that I should include the web address in every email I send, so you're the first.)

Life in a wheelchair.

Dear neglected, overlooked, and ignored blog,

It’s been two weeks and two days since Liz and I made the fateful decision to have Vietnamese noodles for breakfast.  Maybe the idea was so crazy that I deserve the consequences. 

Anyway, we had been in Montreal for six days, attending the CMSC (Consortium of Multiple Sclerosis Centers) conference.  We both love Montreal so we stayed in town for two extra days to have some fun.  On Monday morning we decided we were hungry for Vietnamese pho for breakfast (neither of us really likes breakfast food) so, at 7 AM, after we packed our bags, we set out on foot to Chinatown to find the noodles we had eaten two days before. 

Maybe I’m too old to multitask, but, when I saw the first “noodle” sign, my foot slipped off the pavement and I tumbled into what had been a planter in the middle of the sidewalk. 

Ambulance to hospital, broken pelvis, pain like I’d never experienced (I broke my elbow and washed my kitchen floor before I would go to the ER.), two days in the hospital, trip home to Miami delayed until Thursday, and the last two weeks in a wheelchair.  You wouldn’t believe the effort it takes just to go to the bathroom.

Thank you, family: Liz spent an extra week with me, and my husband, who decided he doesn’t want to be a nurse when he grows up, took a week off.  Can’t decide what’s worse, the pain, inconveniencing everyone I love, or looking at my dirty floors.  Try as I might, I haven’t been able to figure out how to rig a vacuum to my wheelchair. 

In an earlier post, I wrote about my feelings when I realized that the lady in the wheelchair on the cruise ship was interested in the color of my lipstick.  Little did I know that I would be the lady in the wheelchair.

Life in a wheelchair really does turn you into a non person.  Last week we ran into someone we had seen and spoken to regularly.  He was walking his little dachshund and didn’t even talk to me.  He didn’t ask what had happened, and, when I turned to pet his dog, he told the dog to come around to the front of the chair so I could see him.  I wanted to say something, but I didn’t want to embarrass him, so I played the non person role.

When we went into the office at the park where we were staying (Life in our motor home was easier because I didn’t have that far to go and could support myself on my walker which I dubbed “the sidewinder” because it didn’t fit in the aisle.), the conversation turned to our Miami Heat.  Why did the guys in the office act so shocked when I joined their conversation?  I wanted to shout “I can’t walk but I can hear, and I can talk, and I still do like the Heat.”

And so, life has gone on.  I just chipped my nail polish and have to figure out how to get to the bathroom to fetch the polish remover, carry all the stuff with me, and polish my nails.  Yes, I really do care about the color of the lipstick and am still the same person who is obsessed with chipped nail polish.  I’d better not chip the polish on my toes because I can’t bend down to reach my feet.

What I wouldn’t do for a service dog.

Masquerading Service Dogs (and I don't mean Halloween)

When I asked my favorite service dog person, Chris Tejcek of My Angel with Paws, about my disgust for people who dress their pets up as service dogs to gain entry into places they wouldn't normally be allowed, here is her response.  She says it better than I ever could:

"It would be extremely difficult for any “certification” to be put in place as there are tons of people that will train their own dog without the aid of a service dog organization. Many service dog organizations charge a lot of money for a dog which would allow only people with the financial means to afford a service dog. Many folks requiring a service dogs are on fixed incomes. I have seen some awesome dogs that were trained by their owners.

The problem is not the people that need the service dogs but the people that want the loophole to take their pets with them. This is an integrity issue. I feel the people that are taking their pet dogs out in vest without cause are very disrespectful to anyone with a disability that needs a dog. It’s like the gun laws to me. Take the guns away from law abiding citizens and the bad guys will still get the guns like they always did. Good people with integrity don’t do bad things.

It is a tough issue that is debated continually."

OK, time for some fun.

This may be the most pleasant video I’ve ever seen.

What breeds make good servce dogs?

Recently, a blog entry discussing the selection of breed of dogs for use as service dogs arrived in my email.  The focus was on children with autism and the severe problems some breeds of dogs have caused.  I was upset, not because certain breeds were singled out as problematic, but because young children were being paired with dogs they could not handle and the parents and caretakers were not closely supervising the interaction between the dog and child.

My response follows:

Having gotten our first Doberman when our first child was 3 days old (in 1966) and sharing our home--3 kids in 4 years--with as many as 3 Dobes at a time, I am appalled at the people who really think the breed dictates the temperament.  It's not the breed, it's the breeding. 

The person who bred our Dobes, Peggy Adamson (Google her, she was really interesting.), was credited for domesticating the breed in the US.  She brought her first Dobe in from Germany, recognized the unusual temperament and then spent 40 years line breeding with attention solely to the temperament of the dogs.

Our Dobes were trustworthy.  But, they were big dogs, and dogs are still dogs.  Would I have given one of my very young children sole responsibility for any of our dogs without close supervision? No. Because children are still children and they can be as unreliable as dogs.

I've been working on a research project to demonstrate the effect of service dogs on the quality of life of MS patients.  For a service dog to be effective in helping the person afflicted with MS, the dog has to be large, strong and sturdy.  Balance and wheelchair issues have to be addressed.

But, when partnering a PSD with a small child with autism or Asperger's, a child who by nature could be unreliable, why would we use large breeds?  Unless the interaction between the child and dog is monitored 24 hours a day, you are looking for problems.  Children who are affected by autism or psychological disorders really need communication and interaction.  What is wrong with small dogs for small children?

When my granddaughter was very small and we frequented Universal Studios, I had trouble understanding the reason she was frightened by the costumed characters wandering around.  She loved Dora the Explorer, but the adult in the Dora outfit was way bigger than the Dora she had met on TV.  How would you feel if you were confronted by a character the size of a gorilla?

Little children relate to little things, little animals, little playhouses, little stuffed animals. The children affected by any psychological issue, and there are many more than just autism, could relate just as well to a small PSD.

If we saw the world through a child's eyes, we might do better in partnering them with a service dogs.  Unless the child needs physical support similar to the MS patient, why can’t we use a small breed?  You can get into far less trouble when a small dog gets out of hand, and the child would be strong enough to be physically responsible for the dog.

As an aside, why would anyone allow any living being, child or adult, to mishandle a dog?  Sorry, supervision is the order of the day.  My children never tortured any of their pets.  We just didn't leave them alone long enough to give them the opportunity. Think of the feelings of the dog.  Although the dog might not react badly and become aggressive as a result of mishandling, it doesn't mean the dog isn't suffering.

OK, I think I've stepped on enough toes and it isn't even 6 AM yet.

Joanne Gruskin

www.msbeyondmeds.com