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adiaz

Share Your Story with NPF

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adiaz    2

Share Your Story with NPF:

 

Are you living with Parkinson's disease?

Are you a caregiver of someone living with Parkinson's disease?

Are you a loved one of someone living with Parkinson's disease?

 

If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009.

 

Go to www.parkinson.org/ShareYour Story

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shakti    14

i read your discussion by BASTIAN BLOEM about the man who could ride a bicycle, but could barely walk. i have pd and i have trouble walking, but i can dance and i can do qigong and tai chi. i have been a dancer most of my life and a dance therapist and bioenergetic therapist . in other words, i have had much experience with movement. strange that i would wind up with a movement disorder. i would like to share that although i have had awful experiences trying to sleep and not being able to and being very agitated, even with medicine, though helpful. the practice of qigong, a fifteen minute practise, mainly bending and touching the ground with my fingers and breathing mindfully, i can sleep , and sleep much more restfully. not a hundred percent, but perhaps 80 or 90%. i would like to share this with dr. bloem. s. kossoy

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tradeaust    0

Share Your Story with NPF:

 

 

Are you living with Parkinson's disease?

 

Are you a caregiver of someone living with Parkinson's disease?

 

Are you a loved one of someone living with Parkinson's disease?

 

 

If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009.

 

 

Go to www.parkinson.org/ShareYour Story

 

 

no i don't have story to tell as it is not concerned with it

_____________________

Import from Australia

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aakash    0

i read your discussion by BASTIAN BLOEM about the man who could ride a bicycle, but could barely walk. i have pd and i have trouble walking, but i can dance and i can do qigong and tai chi. i have been a dancer most of my life and a dance therapist and bioenergetic therapist . in other words, i have had much experience with movement. strange that i would wind up with a movement disorder.

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prd    1

Hi,

 

If there's anyone out there who has nothing better to read right now and needs to kill a few minutes......may I suggest...... this subdomain of my website ?

 

http://parkinsons.pr...parkinsons.html

 

As courtesy, I added a link to the main Parkinsons official website too.

 

I'm hoping for your rections / replies.

 

Regards

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sarahjo    68

Good morning everyone, my name is sarahjo, I have been going back and forth should I write or just read, I have been going to dr.s since 2002, had a cervical fusion then and things seemed to be going well for a few years and then about 2005 I started having these twitches in my right arm, and seem to be tiring pretty easily, burning in back of my head and right shoulder, stiffness, started loosing my balance two years ago,(many other symptoms to long to list.) but chopped it up as if the fusion was giving me fits, as there is no pd in my family any where, (my father, who passed in 2007, was over in veitnam in heavy area usage of agent orange, for a period of time, came home during a recovery time from being wounded, when he was home I was conceived) (I have four siblings, which my sister is now having symptoms I started in 05) finally after many trips to drs. and mri, and ct scans, spinal taps, etc.... many test, we (my husband and I) switched primary dr, and he recommened this neuro. dr. which he (new neuro, dr.) ran again his own test, and said he thought he knew what was going on but this medication would give him a def. answer. Started taking sinemet 25/100 is working for the tremors, and joint pain when I am on but about 5 hours later its worn off. crazy how you go from fine to can't stand or just take a step. (Praise the Lord I can walk with out cringing every step.) I can sit and watch a movie with family without getting up twenty times through out. Sorry for rambling, I just am thankful to have an answer, yet a bit scared as well. starting exercise program tomorrow in hopes it will help with balance, energy, etc. this not sleeping at night is driving me crazy. I will write again, If anyone has some advice to help me, manage my family, I have an amazing husband of 28 years, three children 23,17, and 12. I have always been their center and they mine. Forgive me again for rambling, so thankful I can read your stories to help me figure out what to do with mine. Bless you all have an amazing day.

Edited by sarahjo
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Beau's Mom    1,053

Welcome, sarahjo. If you have been diagnosed with PD, or even if you haven't, I highly recommend that you see an MDS--Movement Disorders Specialist--rather than a regular neurologist. They have several years more training specifically in Parkinson's and Multiple Sclerosis. They are usually attached to large medical centers and offer access to many therapies that can help you stay healthy as long as you can. If you need to know where to find one, call the NPF Helpline number on this website and the specialists there will help you find someone close to you.

 

As you suggested, PD affects the entire family. Some marriages are strengthened while others dissolve. Keep posting, on this or any other thread that appeals to you. There will be many here who will share their experience, strength and hope as we travel the PD road together.

 

So glad you took the time to introduce yourself. Please share more as you feel comfortable.

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sarahjo    68

Thank's Beau's mom, I didn't think of mentioning that this nuero. specializes in MDS and sleep something, I am in California, and we have all kinds of ???? drs. here I think I have found all the quacks lol, this one really knows his stuff, and comes highly recommended, I am so thankful and can't wait for my appt. next thurs. the 30th. How do you get past the frusteration of this now thing that is controlling yours and my life? get so exhausted, before all this started I use to be very active helping many people, and now I feel so bad I have to tell ppl no, don't do even a pinch of what I use to do, will this or some of my energy come back? you said that pd will either make your marriage stronger or it will ruin it, well I can say it has brought mine super close, and I am thankful for that, I am a firm believer that my roll as a mother and wife, is at the top of everything in my life, I have always taken care of everyone and its really hard to accept that I now have to count on others to help with simple things, I couldn't even pin a broche on my shirt on sunday for church, I have gone to mostly wearing stuff I can slip over my head, I am just venting, I have a wonderful supportive family and church family, its just hard to explain when you look so normal on outside, and yet inside you are a mess, I should say I am a mess. I tell myself God is love and He takes care of me and if I am suppose to be a testimony then its fine, and I truly believe that just some days are really rough. you know. thanks for listening. Blessings to all that are out there, my prayers have extended to you all. Good night

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Beau's Mom    1,053

sarahjo, it is my pleasure to respond. I have been where you are and have felt what you feel. I'm glad you have a good MDS.

 

It took quite some time, but I have finally come to the point where I can accept that PD may control my physical body, but I need not let it control my thoughts and feelings and attitude. I was given permission by my neuropsychologist early on to let of of my need to have the energy I've always had, to be as sharp as I've always been, in short, to go easier on myself. On the days when my symptoms are more evident, my only job is to eat, sleep and breathe. Being an overachiever, I added meditation to the list.

 

For me, the process from shock to acceptance has taken many turns, Be gentle with yourself; you are just at the beginning.

 

Let me also suggest that you post on a different thread. Not many people read this thread. There are several appropriate existing threads in both the Open Forum and the Young Onset Forum; or you can simply copy and paste your original post on either forum under a new thread.

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sarahjo    68

Thanks again, Beau's mom, you have been a tremendous help already. I only have a few weeks left of work and then can go back to really taking one day at a time, I find that if I try to plan tomorrow it may or may not happen, trying to stay in today, as my mother use to say, live for today. (plan for tomorrow but live for today.) never really understood til now. funny how life comes back around, and you hear those saying that never made any sense to you as a child now makes perfect sense. Thanks again, and you have an amazing day.

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prd    1

Hi Everyone,

 

I actually (mistakenly) signed up to this site as I got confused with the USA link (as opposed to the UK link) for the PD forum - dohhhhhhhhh !

 

But as I'm here, may I comment upon the bicycle riding as opposed to walking ability post ?

 

Balance is a bit of a problem whilst riding my bicycle. I live in The Netherlands where the bicycle ( "fiets" ) is the most common form of transport. I prefer to cycle rather than walk, as I can cycle better than I can walk dependent upon how tired I am.

 

Anyway, the point I want to make is....if if try to "confuse" my brain by thinking to the opposite, the balance when cycling and the walking improve. This might seem laughable but it works.

 

What I do is, when taking a forward step with one foot, I say to myself I am really moving the other. For example I start walking by taking my first step with my right foot going forward - but really I am thinking I'm doing it with the left. SImilarly, when on my bicycle, if I am pushing down on the right pedal (then obviously the left and then the right and so on) when I say to myself, left , right, left, right, etc,etc my balance is far better.

 

When I re-read what I just typed it appears I am crazy....BUT honestly it works.

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tabby    5

You do not sound crazy to me. I do not have any balance and never had. Walking is better for me.

 

My story about my getting PD is short so far.

Twelve years ago I started having tremors in my right hand. My son would hold my hand down to keep it still.

I thought it was my Epilepsy.

 

Three years ago, I was told that I had Alzheimer's. Then another neurologist said that I did not.

Two weeks ago, I walked into my doctor's office and started having severe tremors. I had at home. I thought nothing about it.

He diagnosed me, I am a classic case, if there is one. I feel that we are all different.

 

The last time I saw my neurologist, it was for an EEG (to test brain waves. The technician kept telling me to stay still. I could not!!

Tuesday I see my neurologist.

 

My voice is hoarse. That is all for now.

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Gulfvet    35

Well, as some of you may or may not know i am still racing for not a cure but just a dx.  My story is as follows if you have time and wish to read please do so.  http://myjourneywiththeva.blogspot.com/

 

I just want to say if you are struggling with PD or the uncertainty if you have PD or not the forums here are filled with people just like you who are always willing to lend an ear and or thought.  It has truly made me understand a lot of what is going on.  And how to best deal with it.  For that i have to give a huge thank you to the other members.

 

 

Sincerely,

Kevin 

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Josh Crane    7

I was diagnosed with Parkinson's disease 16 years ago at the age of 32. It has been a real struggle but Im glad I have the support of my 4 sons and wife. When I was first diagnosed with PD, I was in denial for almost 4.5 years. I didn't take any medication. After 5 years of being diagnosed, my wife needed to help me get dressed and feed me many times. I was a real wreck. I had to start taking medication. The year before, I had lost my investment banking career, my savings, my acquaintances, and almost my family. My turn-around came around a year later. I finally have worked my way back up the corporate ladder & regained confidence and credibility. I was born in Amsterdam, travelled the world and lived in many countries. Currently, I reside in the OC, California. Please feel free to ask me questions, so we can start a dialogue. This should be a place to get connected with like minded PD patients, share ideas, give advise, and hopefully create awareness about the many PD Patients that are hiding from the world and/or are afraid to let any one know about their horrible misfortune.....

Let's talk!

 

 

Thanks,

John-Pascal

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baffo22    0

Hi,

 

Wanted to share my Uncle's story with Parkinson's here with you all. It was recently published in a local newspaper and a video chronicling his journey is on the website.

 

 http://www.northjersey.com/news/bringing-buddy-back-teamwork-technology-restore-a-parkinson-s-patient-video-1.1380917

 

Follow up story here:

 

 http://www.northjersey.com/news/health-news/friends-raise-cash-for-parkinson-patient-1.1389405

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Dr.Ro    5

Hi everybody:
My husband started with right hand tremor in oct 2014, went to his first neuro appointment dec 31 (yeah, great date for bad news)... Had a lot of tests jan-feb and had confirmation on march, at 38 years old. Currently he has right hand and leg tremor, bradikinesia and no sense of smell. We are searching for the right MDS, the doctors we have been to have a "there's nothing you can do so come back (worse) in a year" approach. As I am a doctor too, I resent that attitude, so we will keep looking.
Sometimes it's hard for DH, he gets sad when he reflects on possible futures, we have 2 little girls... So we've been reading, researching and learning all we can to beat this thing, together.
I try to be strong for him, but sometimes it's hard for me too.
Yesterday we celebrated our 10th year Anniversary.
That's our story

Edited by Dr.Ro
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Dr. Ro,

 

Relatively new to this forum, I may be mistaken, but it looks as if no one responded to your post.  I can understand completely your problem with some doctors' attitudes.  When I first suspected PD, I saw two neurologists.  The first one was ignorant of some of the most common symptoms of the disease and told me flatly that I would be in a wheelchair within ten years.  What an unnecessarily and inaccurately devastating diagnosis!  The second one confirmed PD and immediately offered me sinemet, which I declined.  Not until I got to a Parkinson's clinic and later (in another state) a movement disorder clinic did I receive proper treatment.

 

Your husband is lucky to have a spouse ready to fight this long battle with him.  And I probably don't have to tell you, a doctor, that current medications and the slowly progressive nature of the disease make it possible to keep PD at bay for quite a while in most cases.  My first symptoms appeared about 19 years ago, and I am still in the early stage of PD.  I hike, play the piano, and manage my own household since my husband's death over three years ago. ( By the way, our wedding anniversary was September 4.)

 

I do not often check new threads in this forum and am consequently very late in responding.  I just hope that you will look back and find this post.

 

Best wishes to you and your family!

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Cenepk10    1

i read your discussion by BASTIAN BLOEM about the man who could ride a bicycle, but could barely walk. i have pd and i have trouble walking, but i can dance and i can do qigong and tai chi. i have been a dancer most of my life and a dance therapist and bioenergetic therapist . in other words, i have had much experience with movement. strange that i would wind up with a movement disorder. i would like to share that although i have had awful experiences trying to sleep and not being able to and being very agitated, even with medicine, though helpful. the practice of qigong, a fifteen minute practise, mainly bending and touching the ground with my fingers and breathing mindfully, i can sleep , and sleep much more restfully. not a hundred percent, but perhaps 80 or 90%. i would like to share this with dr. bloem. s. kossoy

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Cenepk10    1

Oh my goodness! First time on this site. Exercise is so good & 1/2 as I understand of the therapy. Moma did Big Therapy & I thought she was healed for about a month. She has never ever exercised- except for her ver brisk mall walk shopping- She always had an excuse to opt out. She was diagnosed in 2003 - thinks she had it much much longer.

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neon man    2

I've lived with PD for 25 years now... shouldn't I get a gold chip or a diamond or something?

 

I have gone for the surgical option and have had a thalomotomy, two palllidotomies, the DBS, repositioned the DBS and an aborted brain surgery where they drugged me up with ketamine and the surgeon and the neurologist got in an argument over how close was close enough while I yelled up from the well I imagined I was in "I CAN HEAR YOU"! Ah yes, fun times....

 

I am on no meds, not because I'm a purist or golden child or anything. they just don't work on me... the side-effects do work however.

 

What I live for (aside from my family) is my art, and I just got short-listed for a large public art project. Go me! I do the designing, budget, computer compositing, scheduling and oversee the installation. I hire metal workers, plastics people, glass benders and digital printers. It's a case of do what I can and farm out what I need to.

 

neon man

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Yes, neon man, I'd definitely vote for giving you a nice large diamond!  You still have such a wonderfully positive attitude after 25 years!  I feel energized just reading about all the things you are doing.  Keep up the good work!

J

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