Tuesday, June 28, 2011

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,

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:
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.

March 15, 2011~~To 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.

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.


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…

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.

June 20, 2011~~To 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,

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…

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

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