10 posts in the category “Share and Compare”

Someone Like Me

Posted May 25th, 2012 by

We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties.  Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.

I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.

MS Patient and Guest Author Jasmine (Jazz1982)

At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.

I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor:  we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?

The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.

The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!

I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.

We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?'” Simple, tried and tested on many a person, and I would highly recommend you try it as well.

So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!

These words are dedicated to Lena, thank you!

A big thanks to Jasmine for sharing her poignant revelation with all of us.  Stay tuned for more guest posts by our amazing patients!


Canine Caretakers: How Service Dogs Can Help Many Types of Patients

Posted May 17th, 2011 by

Service Dog Mali

Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog.

What are the benefits – both expected and unexpected – of a four-legged assistant?  We asked some of our members to talk about their service dogs’ best qualities.

The Uncanny Seizure Predictor

  • “[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” Mandysmother (Epilepsy patient)

The Sensitive Tear Licker

  • “He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.”  Some1Special (Mental Health and Behavior patient)

The Good-Humored Mind Reader

  • “[My service dog Mali] was the best decision I ever made. With her I now have some of my independence again, and for a woman who used to climb mountains and water ski, going to the store again after years never going anywhere alone, this means the world to me. The fact that Mali has a sense of humor and seems to read my mind is only another blessing to go along with my newfound freedom.” Anahit (Fibromyalgia patient)

The Anti-Tripping Companion

  • “My neurologist thinks the service dog is preventing my gait from freezing! (When he heels, he constantly moves his head near my knee to check for a command.) I haven’t ended up on the ground or floor since I got him. He is great company! He is always willing to join me on my ‘5 miles/day,’ and since I got him, no one has mistaken my Parkinson’s for being intoxicated!”
    FriendlyTraveler (Parkinson’s disease patient)

Do you have an outstanding service dog too?  Share your experiences in the comments section and don’t forget to add “service dog” to your list of lifestyle modifications.

PatientsLikeMe member jdevita