Have Parkinsons or Are You a Caregiver? Looking for an Online Support Group that Really Works? Check Out MyParkinsonsTeam.com
As you know I've had Parkinson's Disease for 8 years and counting. I have subscribed to and browsed nearly 100 Parkinson's related websites, support groups, and blogs to read up on the latest treatments, funding, research and to listen carefully to how other people, just like me, cope with Parkinson's every day.
Boy, did I find a treasure. You must check it out. I'm not sure how I came across MyParkinsonsTeam.com, but I am so pleased I did. This is not your ordinary Support Group. Its the design that really makes this one work.
Typically a Support Site / Group will allow one member to post a question or comment and everyone responds. Its a bit interactive, but you don't know other member's STORY. When you sign up with MyParkinsonsTeam.com, you start your own profile page that is the most individually comprehensive profile I have reviewed. In your profile page you get to tell everyone your "story" in your own words. You share with others your medications and treatments (what works and what doesn't). You list YOUR personal PD medical team; you can also recommend them or comment on their services. Your profile also includes relationship status and you can participate in a Q&A section with guided questions to answer. I felt right at home immediately.
MyParkinsonsTeam.com was designed for individuals to meet other individuals that are either in their local area (perfect for meeting other PD journey men and woman you didn't know lived close by for support) or have your similar symptom pattern or treatment regimen. Once you find someone who fits the profile of someone you would like to have on your personal "Support Team", you simply add them at the touch of a button and write them an introductory note.
I've only been a member for about a week and I already have a "team" built of 13 like-minded PDers. Although I love my PD circle to be eclectic, I do lean towards the more active, well rounded, fiercely independent survivor who is doing everything they need to do to live with PD successfully and encourage others to do the same. I can hardly believe the wonderful people living with PD I've met so far from around the US. We chat one-on-one, we can meet locally for a cup of coffee, you can write out questions for your "team" to answer, we swap information on what works best, and I have come to look forward to connecting with members of my team on a daily basis. It is not a chore; it is similar to your own PD family you build yourself.
I very highly recommend this PD Support Site. I can easily say its in my Top 3 of all time. Check it out and sign yourself up at www.MyParkinsonsTeam.com. You will thank me later.
Here is my Personal Profile I set up on MyParkinsonsTeam.com. Feel free to add me to your team and let me know what you think of this site.
If you shop at AMAZON OR EBAY would you do this for me? It's easy. You won't notice any difference. The change just takes you through their invisible portal and a portion of each of your purchases goes to the Michael J Fox Foundation. THANK YOU!!!!
Click the pictures below to get easy instructions on how to set your accounts up to have a small amount of each purchase you make donated to the Michael J Fox Foundation for Parkinson's Research!! I won't cost you anything extra. And you will help millions just like me.
Hi everyone! Exciting news to share...... I have been invited to be a guest on The Parkinson's Radio Hour here in South Florida on Thursday, February 25th from 6-7pm on AM station 1470. Its a 50,000 megawatt station that broadcasts to a population of more than 6,000,000 people. (Not scary at all!)
The interview topic is "Issues and Solutions for Early On-Set Parkinson Disease" and I will be interviewed by host, Jeff Dowd, along with University of Miami Movement Disorder Neurologist, Dr. Henry Moore. My doctors are part of the same U of M system, coincidentally.
I was recommended to the show's producer. The person who recommended me told them that I live with PD with a positive attitude and that I inspire others with and without PD. I have no idea who the person is but thank you for your kind words and I am so happy that you are inspired by me or my story. That is my mission, for sure. To make sure that all who don't have PD appreciate the stillness they don't even know they possess and to make sure that all who do have PD seek out the forms of treatment they need and that work for them. There are so many resources today there is no reason at all to suffer. If you are suffering with it or know someone who is, their mind is playing tricks with them and they don't realize there is a way out. It is up to you as their friend or caregiver to get them the help they need. Remember that when I slip back "into" Parkinson's that I don't realize that it has happened. I need my husband to say "its time" to see my doctor for a tune-up of my medications or to check my progress. He can see when I'm becoming lost; I can't - and neither can your friend or loved one. I'm hoping that my story helps just one person to be better, feel better, live better. Then this journey I've been on has been worth it.
If you can't listen in, the show is available afterwards on podcast. I will get you that address. This show was aired on a different station and those past programs are available at http://wbzt.iheart.com/media/podcast-parkinsons-radio-hour-parkinsonsradiohour/. Wish me luck and listen in if you can.
I learned through the advocate given to me by Partners In Parkinsons, Maggie Barnett, how important exercise is in delaying the progression of Parkinson's Disease in the brain. She strongly recommended that I research the LSVT Therapy (Lee Silverman Voice Treatment) BIG Program and find a PT clinician in my area now while I'm still in the "early to mid" stage of the disease. She advised me that the program - developed in 1987 - has a proven track record of helping to retard PD and as a bonus I can put the techniques I learn in my "toolbox" to use for the rest of my life.
I did my homework online and with my insurance company. Online there are incredible videos on You Tube of before and after program results. I was stunned. Older patients barely walking nto the clinic practically jog out 4 weeks later (the length of the program). How could that be? I called my insurance company and found out they cover 100%. I'm in!!!
Through the LSVT Global website I found a few program certified PTs in my area and settled on HealthSouth Rehab. There I met Erica Leiva, my amazing PT friend. For 4 weeks she tested me, put me through my exercises, challenged me to balancing acts NORMAL people can't do(!), and made me smile every morning for 4 weeks. She improved my balance by a good 50% and counting. I made her stretch and learn to count to 10 while gabbing the whole time. (Was that 10 or 15? Who cares 😄). We had fun and I stopped being dizzy when I sat up in the morning; I can close my eyes in the shower without falling over; and I annoyingly test all my friends and family to make sure they improve their balance into old age. Erica has made me a crazed advocate for the LSVT Program. And I highly recommend it to any and all PD patients. Trust me, you need this program just to affirm you're not crazy. It really is your brain playing tricks. But you can fight back and reverse the effects. It really works. Thanks Erica.
Well I made good use of my time while I waited for the sun to come up and created a "One Face Of Parkinson's Disease" Group site on Facebook.
Facebook is a closed group for my privacy but if you'd like to follow me an you're not an invited member email me through the comment form.
Thank you Aunt Diane for introducing me to Partners in Parkinson's. If you have PD or know someone who does this is a "must have" in your toolbox.
I never knew there were advocates out there dedicated to supporting me and you. Sign up to have an advocate call you. They are trained to help identify all the resources you need to help you live well and cope with changes as they happen.
They also sponsor educational events in a handful of major cities. If you are lucky to live near one I encourage you to take advantage. Learn what's on the horizon. And get that all important group support.
Here's to your health and mental well being!!
The one thing I've never been is one who likes to exercise. I've always been slim so have never had to diet or lose weight. I also come from a sedentary family. Exercise was never encouraged or suggested for that matter in the 60s and 70s. Everywhere you read about PD the doctors say "Exercise, exercise, exercise". I say "UGH!"
I feel relatively well on my medications. There isn't any barrier to exercising, except for increased tremor in my left arm and hand when my blood pumps. That would tend to make me (and I'm sure other tremor sufferers) avoid exercising in public as I hate that to be an attention grabber. I thought I might begin with a piece of newfangled equipment they have out for use at the office. I'm in my own private space. And I can keep working. Good combination. But will I like it and stick with it???
As one who doesn't exercise, just researching exercising makes you feel like you've accomplished something without having to break a sweat. I kinda like that. I made sure to spend a lot of time on research!!! Even drank Gatorade to rehydrate.
Not too long after I came across the DeskCycle Exercise Pedaller. Hmmm. I really enjoy a casual bike ride but don't take time out of my day to do any. This could be interesting. It received fabulous reviews. It's only 10" tall so fits neatly under any desk height. Pleasant to look at; it appears in pictures to be very sturdy and uses magnetic resistance for silent operation so I won't bother other people. Love the price: $160 with free shipping from Amazon. I was contemplating a gym membership, but at almost 50 years old know myself very well; I won't use it so will waste $35 or more a month AND feel guilty every day. I ordered it.
My DeskCycle arrived on Tuesday this week and my McGuyver husband put it together. (Actually it's simple to do. A few screws and it comes with it's own tool.) He installed it under my very small, very short metal and glass desk. I secured the Velcro strap included to my rolling chair and put my feet in the peddle straps. That's all it took to get started.
I hate to giveaway the ending but I love this machine!!! I wasn't sure if my knees would clear the desk (they do), if I would be able to work and peddle at the same time mentally (I can!), or if it would make me break out in a sweat so badly I would need a shower at the office (I must not be completely out of shape because no sign of this). The DeskCycle lives up to the write ups. It is sturdy, silent, and provides a smooth pedal. It feels similar to a recumbent bike. I am pleasantly surprised and actually look forward to pedaling every day!!! Yes, I just wrote that.
I pedalled as much as I could fit in for the past 3 1/2 days as I'm getting used to making it a part of my day. It suprisingly added up to 20 miles. It certainly don't remember pedaling that far or for that long. One great thing is you're distracted from exercise by your work!! You could clock dozens of miles and not even realize it. PERFECT! Just like researching you get that high of imagining your exercising, except now you're actually doing it.
After the first day I noticed my thighs were sore (I'm starting off with a tension level of 5 out of 8). By the fourth day my legs do not feel as shaky when I walk. Markedly noticeable while strolling with my dog. Hmmm.
I betcha if I keep this up it really will improve my balance, my muscle tone, my posture (it makes you sit up straight in your chair - awesome bonus), my strength and maybe even trim my legs, thighs and butt. Forget all of that - the DeskCycle is plain fun and easy. Definitely worth the price and I highly recommend it.
Check back with me for updates. I'm hoping this inspires me to add free weights to tone my upper body and then feel confident about that yoga class. Wait, let's not get too ahead of myself. Anyone have a cookie? 😀
Do you need support?
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"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
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"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."