Stories

Krystin Head Shot 1

Bittersweet Serendipity

Diagnosed at 35

It was March of 2000 and everything in my life was headed in the right direction. I was happily married with two daughters aged 5 and 2. I was working in Human Resources for a company that was lucrative enough to give me the professional opportunities I'd been looking for. At this time we were also in escrow with the purchase of our first home. Minus the stress, life was pretty good.

I was 27 years old when I saw my left pinky twitch around for the first time. I was sitting at my desk looking at it as if it was its own being. I quickly attributed it to the stress I was under with buying the house. In conjunction with this, I was commuting a long ways to work and raising two young children so it wasn't out of the question for someone in my position to be showing a bit of stress.

Fast-forward two years Even though I had been laid off from my last job due to the slow economy, I was able to secure another position fairly quickly and get back on track. I still had my marriage, my kids, my house, and my job yet over the course of two years the pinky twitch had gradually progressed into a full-on tremor in my left arm. I was also beginning to experience severe bouts of depression and anxiety to the level of panic attacks. People noticed my tremor and often asked if I was cold or nervous. Neither was true and I had no idea why I was feeling the way I was, both mentally and physically. I began seeing doctors ranging from psychiatrists to neurologists. This was the beginning of my long journey to the truth.

Over the next few years, I was diagnosed with a pinched nerve, anxiety, and essential tremors to account for my shaking arm. I was put on a host of different medications to alleviate the problem, none of which worked. All the while, my tremors moved into the right side of my body and my anxiety and depression took center stage. I couldn't figure out why I was so unhappy. It all became too much for our marriage to bear and my husband and I divorced in 2006.

In 2007, after getting accustomed to being a single parent, I decided to pursue a multiple subject teaching credential. By this time, my symptoms had multiplied to include problems with balance that prevented me from getting dressed while standing up, trouble with odd activities such as beating eggs or cutting meat, and having difficulty writing and walking. Also, the tremors had progressed to my legs and neck and all of my muscles were in a constant state of contraction. My body was succumbing to an invisible terrorist and I was beginning to feel hopeless. I was uncomfortable and miserable. People asked questions. The doctors wouldn't listen to me. I was getting worse and saw nothing but hopelessness in the future. Contemplating "what would it be like if I weren't here" became commonplace thinking for me.

Luckily, I was surrounded by friends and family who kept me going. I obtained my teaching credential and began working as a 6th grade teacher. I continued seeing neurologists but also conducted research on my own. I was determined to put a name on whatever was slowly stealing my life from me. I couldn't fight it if I didn't know what I was up against. At one point I suggested to my neurologist that I could have MS or PD. He quickly dispelled my theories, stating that I had "no symptoms" of either of those diseases. After all, he was the Chief of Neurology, and he knew everything and I knew nothing. I had had enough of being disregarded. I was living in this body and as far as I was concerned, I was the expert and SOMEONE was going to listen to me.

I asked for a referral to a movement disorder specialist. He performed all of the motor tests that I had anticipated because I had been diligently doing my homework and knew what to expect when testing for PD. After walking up and down the hallway, writing a sentence and drawing a swirl on a piece of paper, and being poked and prodded a bit, I was handed the diagnosis of Young Onset Parkinson's Disease. At 35 years old and after eight long years of misdiagnoses and useless drug treatments, I finally knew what I was contending with. Although the news was supposed to be shocking, it was surprisingly liberating. I felt that my intuition about what was happening to my body and mind were being validated after so many years of being rejected. I put up my dukes and prepared for the long fight ahead.

As much as I would love to not have Parkinson's Disease, I cannot deny the wonderful people it has brought into my life and the awesome opportunities I have been afforded. As odd as this may sound, Parkinson's has given me great purpose in life. I am participating in an effort to improve the quality of life for so many who suffer with this disease. In the past year, I have been brought onto the Board of Directors of the Parkinson's Network of Mount Diablo (PNMD) in Walnut Creek, CA. The members of the board took me in and not only supported me, but gave me the tools to educate myself and others. I serve as the Young Onset support group leader where I have met both Parkinsonians and their caregivers who continue to inspire me with their experiences and insight, as well as their enduring strength to make the best of their lives and not let PD take over. Their strength is born of the absolute refusal to be weak and I am getting stronger and stronger every single day because of their bravery.

I have since remarried and inherited 3 stepsons. Every day is a blessing and I thank God for all I've been given, the good as well as the bad. After all, if we don't see our way through the tough times, we won't know how to truly appreciate the happy times.

I share my story because like others with PD, it is a valuable asset. Sometimes my inner strength begins to diminish and I just need to hear from others who may be having a tough day like me. It makes me feel better and replenishes the strength within me to keep moving when I am reminded that I am not alone in this. I hope my story does the same for anyone who reads it.

My outlook on life is this; every one of us is faced with personal struggles. The power to overcome these battles comes in many forms such as family, friends, education, faith, and hope. How we choose to utilize the resources available to us will be commensurate with our victory.

This is dedicated to my children who are my constant source of strength and reminders of who I'm really fighting this battle for. I also would like to thank my friends and family (old and new alike) who have been by my side since the beginning of this journey, are now, and who will be until the end.

~Krystin

(For more information on the Parkinson's Network of Mount Diablo, please visit www.pnmd.org)

98 Comments

Great writing K. You know I hate to hear stories about this happening to anyone, but they need to be told. Even more important is the fact that once someone experiences it they don't sit back and take it. They need to stand up and fight to cure it. You're doing just that. You were born to end this.

Enzo, Dec 11, 2010

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Hi there I was just diagonised last week, and it was a shock to my system. I am a health 43 woman with everything going for her. My systoms started about 9 months ago on my right side of my body and then moved to my left side. I just ignored it,my doc thought it was my thyroid imbalance but it got to the point even on a sunny day outside my friends thought I was cold. I fortunately got a great neurologist who recommended me to do a DAT scan very expensive but worth it . Now I am going to deal with it full speed ahead and see where it takes me.

N, Jun 14, 2012

ditto what Enzo said, and I'd like to add...I'm glad we on the same team and that i can call you friend...yahoo --give em you know what!!!

In10city, Dec 11, 2010

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Well written and inspiring!

Denise, Dec 11, 2010

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My wife said tonight:After how I was feelingYou know you are less of a jerk since being diagnosed with p.dMy reply I'll take the jerk back EJB

Earl Boisjolie, Jan 10, 2011

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SEVERE restless leg syndrome, 4+ hyperreflexes, balance issues, falls, twitching so bad I cannot sit, lay or stand still. 6 years, MRIs periventriculat deep white matter lesions), EMGs, NO DIAGNOSIS. Doctors dismiss my complaints as "Aging". It is so darn frustrating. One doctor said I had Parkinsonism, which means he did not want to make a diagnosis. I am still waiting for an answer.

Sandy, Feb 1, 2011

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My mother (carol) has parkinson's (advanced) she is 68 years old and was diagnosed at age 60. Sometimes I just don't know what to do for her, and wonder if there is anything else out there that may help her. I feel so lost at times. Please help !

Carol Hays, Feb 1, 2011

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I also have young onset PD. Have had tremors for the last 28 yrs. Not diagnosed until 7 yrs ago. Trying to find a Dr. that is knowlegable was hard. First question from first neurologist was "How's your sex life"
Some days are so bad I get so depressed, wonder if it is all worth it. I started a support group when I was diagnosed with fibromyalgia which helped a lot of people. I don't have the energy to start one for PD. I am so afraid of the future with PD. I've always been so independent and now even putting on my shoes and socks is a major ordeal. I can't work any more. I spend my time making quilts and giving them away...but even that is getting to be a big chore. But the alternative is not to my liking. So I plod along, hoping that tomorrow the sun will shine more kindly on me and others who have this to live with. God Bless.

Jean D'Ailly, Feb 1, 2011

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Very inspiring. I will share your story with my PD groups.

Nancy, Feb 1, 2011

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I can't believe (but of course, I do believe you) that any neurologist in this day and age could have let this escape him/her, It's positively disgraceful. I'm 61 years old and have had PD for 8 years. I just had DBS surgery in December and am going through the periodic adjustments. It is helping, but I'm not yet sure how much. It was a big decision, but I'm glad I decided to do it. You gave a very moving description of your last several years, and I wish you all the best.

Rose Maude, Feb 1, 2011

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Hi Krystin,
I'm glad you're finally being correctly treated for Parkinson's. I have friend with it and I told him about Protandim. Have you heard of it from Life Vantage? check out:
http://www.mylifevantage.com/LisaN
It has been Dr. McCord's life work to study Free Radicals and the link between Oxidative Stress and several diseases that we become more prone to as we age. Last week I was at a Life Vantage conference in San Diego and was overjoyed to hear a lady tell me that her husband's Parkinson's symptoms had completely gone away after about 4 months of being on Protandim. It is a supplement of 5 All Natural Ingredients. I'd be happy to tell you more about it if you would like to e-mail me. Dr. Perlmutter, a neurologist highly recommends it because it has been shown to increase your levels glutathione by 300%--very important for Parkinson's patients! Good Luck to you, Krystin!

Lisa Nunes, Feb 1, 2011

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Wow, so many similarities! The common theme seems to be the inability to be diagnosed when having early onset Parkinson's. It was the year 2000 and I was 50 years old with a husband and a son,7 years old. I had an initial symptom of a tremor in my right thigh. I had heads of Neurology in teaching hospitals tell me it was not PD or MS and was probably stress. I knew they were wrong. Divorced my husband in 2005. He had no empathy. I have been blessed with a mild form of this disease. I did take 1200 mg of CoQ10 for one year. Maybe it helped? Thank you for sharing your story...

Elizabeth , Jun 5, 2012

I was diagnosed a little over a year ago, at 38. Protadim is deffinately a part of my daily regimen:)

staycee, Sep 11, 2012

i just ordered this,thanks for the info.

Vicky Boackle, Sep 14, 2012

My husband was put into a special program for Parkinson at Kirkland Clinic in Birmingham, AL and did great. He was like a new person. He continued his work which is and was stressful as it is in sales. However, 10 years later and approachin 71, he is working away happily. He tires easily, but does sound for our church, travels out of town on business and never misses a day at his job. He is a wonderful mate and I enjoy his wit and intelligence.

Jo Arnold, Feb 1, 2011

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how did you get in this program?

Vicky Boackle, Sep 14, 2012

I just finished a massage and my masseuse told me that I am not nurturing my left side of my body. As I think about PD, I realize that I have been letting negative feelings about the disease become dominant. I need to be more positive and nurturing of myself as well as those around me. God bless you Kyrstin. By the way I think your name is special, is it Swedish?

larry, Feb 1, 2011

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I am in the same boat, not sure what I have. I started with my hand, move to my legs and got very painful. Doctors told me I have PD, a year later I got better and most Dr say I do not have PD anymore. I work with computers and cannot use my wright hand most of the time. I live in San Diego, and most specialist still don't know what I have, at 48 years old, I do identify with your story.... THANKS

Milt, Feb 1, 2011

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Hi Sandy,
Have you researched into MS? I'm not a doctor and I know it's the last thing you want to hear but from what you're saying about the lesions, it sounds indicative of MS. Before I was diagnosed, I researched MS as well as PD as possible culprits. I also have 2 friends who have MS that I can put you into contact with if you'd like. My email is krystinradke@yahoo.com. Please email me so I can give you more information and we can chat. Best of luck to you.

Krystin Radke, Feb 1, 2011

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Hi Earl,
I hear ya! Keep up the humor! It helps a lot. :)

Krystin Radke, Feb 1, 2011

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Hi Carol,
I would recommend a support group for her and also for your benefit. Being a caregiver is a very difficult job and I commend you on what you are doing for your mom. Go to the home page of the APDA and click on the "Info and Referral Centers" tab at the top of the page. Select your state and you will find a list of chapters in your area who can direct you to support groups, respite care, etc. My email is krystinradke@yahoo.com. Please feel free to email me for anything, anytime!

Krystin Radke, Feb 1, 2011

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Hi Jean,
I can strongly relate to your comment. Unfortunately, with PD comes depression. It is part of the disease as well as a reaction to it. I actually experienced a lot of depression and anxiety before I presented with any physical symptoms of PD. Come to find out, this is typical of the disease. I was prescribed various antidepressants before my diagnosis but none of them seemed to really work. It wasn't until I was prescribed Sinemet and Wellbutrin (this one just happened to work for me but there are others) that I felt a lot better. I'm not sure what you are taking for your PD but it sounds like an adjustment to your meds may be a benefit to you. There are so many medications/treatments out there; you just have to keep trying them until you find the specific medication of combination of medications that work for you.

Krystin Radke, Feb 1, 2011

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Hi Jean (cont.),
I can tell you that PD is considered a "designer disease", meaning everyone has their own variations of the symptoms, speed of progression, and response to medications and treatment Please, please, please don't ever think that it's not worth it. Take it from someone who has had those exact thoughts. Rather than start a support group, maybe you can join one that is already established. You have obviously done so much for others in your fibromyalgia group; you deserve to have a group to help carry you through the tough times. I'm not going to lie I meet each day with a bit of cynicism in the back of my mind but that's normal. The important thing is to drown that cynicism with something stronger- faith. It's going be a rough road but the journey means so much more when you fight the good fight and enjoy the success of your labors. My email is krystinradke@yahoo.com. Please keep in contact with me. It will be good for the both of us.  Take care.

Krystin Radke, Feb 1, 2011

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Hi Nancy,
Thank you! I would appreciate that.

Krystin Radke, Feb 1, 2011

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Hi Rose,
I agree. The problem I had was that some doctors were too proud to admit that I might be right. I came to the table with the classic symptoms and because I was so young, they didn't even entertain the idea. As a matter of fact, I haven't met anyone as informed as the group of people I went to a PD conference with in GA. It was amazing the specificity of the questions they asked the speakers. I was so proud to be part of their crowd! At that particular conference, I met several people with DBS and heard how it had dramatically changed their lives. I keep current with DBS updates because I suspect that I may choose that option for myself in the future. Good luck and please keep me posted on how you are doing. krystinradke@yahoo.com.

Krystin Radke, Feb 1, 2011

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Hi Jo,
It is so refreshing to hear such a positive story such as yours! I'm so glad to hear that your husband is doing well. You have done so much for those of us who are weary of the future by instilling hope that we can live healthy and happy lives. Thank you!!! (P.S. I will go online and check out that Kirkland Clinic you mentioned).

Krystin Radke, Feb 1, 2011

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Hi Larry,
Your comment brought on an "A-ha!" moment for me. I am right hand, right foot dominant and I never thought that my left leg/foot acted up so much because of the possibility of neglect. I agree with you in terms of staying positive and nurturing oneself. The mind is so powerful and we tend to forget that positive thinking can overcome a lot more than we give it credit for. As for my name, as far as I know I don't have any Swedish in my lineage and I think my parents were just being creative.  Thank you for the compliment!

Krystin Radke, Feb 1, 2011

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Hi Milt,
My advice to you is to find a Movement Disorder Specialist. I went to many neurologists before I finally went to a MDS who diagnosed me. They are much more informed about specific neurological/movement disorders than regular neurologists. The statement you made about a doctor telling you that you "no longer having PD" probably should be reported to the medical board! Once you have PD, you always have PD. There is no cure and it doesn't simply just go away (unfortunately). Maybe the doctor meant that you were misdiagnosed? In any case, keep researching and it might be a good idea to keep some sort of journal for a period of time so you can present that to whoever is treating you. It will prove to be very helpful because they can see your symptoms over that course of time and likely make a more accurate assessment. Keep me posted! krystinradke@yahoo.com.

Krystin Radke, Feb 1, 2011

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God bless you Krystin & your children. My the way, hope you applied for child support from your ex husband.

Elaine, Feb 2, 2011

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Thank you for sharing your story and persevering .I too went through a trying
time trying to find out what was wrong with me. I finally was diagnosed with cerebellar degeneration, am being treated at the Cleveland Clinic in Weston, FL. Not a lot is known about my diagnosis or what caused it. I am getting by although I am now divorced after a 32 year marriage. I will pray for you.

Deborah Frichette, Feb 2, 2011

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Im glad you got your story out there sis. Keep on keepin' on. You know I am always here for you. Love you!

Kari Lee, Feb 2, 2011

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Im glad you got your story out there sis. Keep on keepin' on. You know I am always here for you. Love you!

Kari Lee, Feb 2, 2011

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Thanks Kari! Love you, too. Thank you for everything. xoxo

Krystin Radke, Feb 2, 2011

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Krystin,

Your background, drive, and ability to overcome is inspirational. As a Parkinson's Support Group Leader and also a person who has Parkinson's, I understand all that you have been and are going through. In our group we have people with Parkinson's from all walks of life, being near Fort Bragg, NC in Fayetteville, many military. I have learned so much about courage, faith, and determination from our members-young and old. If I had to pick a section of our society in the USA who are fighters, it would be those with Parkinson's and their caregivers as well. Thanks for supporting a great organization. A cure is what we are looking for. Mostly not for ourselves, but for others.

Blessings,

Kent Rosborough

Kent Rosborough, Feb 2, 2011

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What is Protandim? I am a caregiver. My husband has put his head in the sand with his Parkinsons. I read everything I can about the disease. He has had the disease for nine years and is slowly getting worse. His walking and
his back are terrible. We have tried
everything for his back. Does anyone
else have this problem? It is not a disc problem.

Barbara Favreau, Feb 2, 2011

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Hello. My name is Aimee. I have been dx'd since 04. hard to believe when I think about where I was then to where I am now. I have a diagnoses of Manganism due to years of being a welder. I was actually an Ironworker but since I had welded since I was 13, my specialty was welding. I loved it. In time I started alot like Kristen. A pinky that would twitch an tremor. My joints became like a ratchet, especially my spine. Everytime I would bend down, My spine would ratchet up, an then back down. Eventually my joints all followed. I would have spine jerks an night sweats that would soak the bed which would turn into fevers that would last a whole weekend or more eventually. I couldn't get out of bed an required so much rest. My joints would hurt so bad with spasms in my neck an throughout my body. No one was familiar. They called it alot of things an would not even try to understand what I was trying to explain. I would tell them I was an Ironworker an a welder they would act amused. Then say, oh yea, well what did u do? Not believing I was capable of much being 5'3 125lbs. They had no idea. I would be stuck in that bed for two years unable to do anything but flip an jerk my muscles as well as sit in a wheelchair to get wheeled around. It took my bobber down. How could I go from having the world by the a$$, to a wheelchair? I studied. An I learned. Eventually I had a pop up come onto my computer while I was on it say "welders beware". It was mee. Right down the line. The ratchet joints the muscle contraction, the pain in my back, the tremors that eventually took over, the depression all of the anxiety. Finally, a fit. Well, im not sure If any of you share my opinion of many doctors of the brain but most are not crazy on the idea of a self diagnoses. They commenced to tell me that I had finally lost the rest of my marbles. I was livid. They didn't help me. Well as most of you know, we ain't known for being quitters. I didn't quit, however I did get mad. Me mad is like a shaking rabid dog. Haha. The more angry I get, the more I shake. It ain't pretty. Anyhoo...i found a doctor who dealt with my exact illness. I learned I lived I tried more damn medicine than a pharmacy has. Some worked, some could stop the jerks an the twitching but turned me into a zombie. I am the proud single mother of three children...kind of hard to mother children if you face is plastered to the bed an drool is coming out the side of your cheek. Anyhoo, this story is long. I am now upright an still uptight. I don't need a wheelchair. I sweated an I chelated. I worked and I researched. I am Woman...hear me roar. I too take Protandim. It has changed my life. I have let go two more medicines an no longer take Parkinson meds. They didn't work the best on me anyway. My Parkinson is also progressive. For the time being, im sending it the opposite direction. It helps so much with positivity an keeping our stress level low which is a challenge as u know. Im trying, im learning an I would be more than happy to share my story with You. My email is down because I cant remember my password. I tried so many they locked me out. Lol! My memory is awful an I struggle, but dang it it feels good to live again. Im more than happy to help U. Ill give U what I have. Which is knowledge. Ill speak to u an Ill show U Protandim. Im kicking butt again enough that im gonna tell disability to go soak its head. I feel loved. I can finally see the light. I sure hope I Didn't bore u too badly with this long story. I left out years of experience with my journey to keep it short. Ill help. Im trying to fix my email. But I am not a wiz at that. Im on Facebook friends. Aimee Leed-Lucas. Lets rap.
Sincerely, mee

aimee Leed-lucas, Nov 24, 2012

It is amazing to see how similar many of our experiences are. After 17 months and 17 doctors, I had a DAT scan to confirm PD. As a youngish (51)woman, all doctors wanted to see was someone whose symptoms are "all in her head, psycho-genic, stress related etc.)When can these doctors start to LISTEN to us? Things that have worked for me: 1. STRETCHING every day and/or yoga. 2.Thinking and being thankful for what I CAN do, rather than thinking of what I can no longer do. 3. When scary thoughts about the future enter my head, I think about something else! You will ruin today worrying about the future. If today is good, then don't ruin it. 4. KEEP GOING TO DOCTORS UNTIL YOU FIND ONE WHO WILL LISTEN TO YOU AND GIVE YOU RELIEF. There are lots of PD meds. You should not be suffering! Go back to your doc frequently if need be to get new/more meds.SEE A MOVEMENT DISORDER SPECIALIST, not a regular neurologist. 5. Seek support with others who have PD, on internet or support groups.You need to talk it out. People without PD cannot relate! Complaining to them will not bring you any relief. 6.Be kind and appreciative to those in your life who are sticking by you. Compliment them. Show the love. Reward them with words.
I have to work on being positive every day because PD can really bring me down. My full time job is trying to be positive and it is helping me a lot to force myself to stay positive. When people ask how I am, I say, "Great." Billy Crystal has a funny saying, "It's not how you feel that is important, it's how you look!" I think about that whenever people ask how I am. I laugh to myself inside and I have a private joke with me, myself and I!
Worst for me is Restless Leg Syndrom and severe gait issues when meds wear off. I have a very very fast progression, which is why they could not diagnose me. My mantra is BE HERE NOW.

Marci from New Jersey, Feb 10, 2014

To Carol, who inquired about her mother (and to anyone else who is in need of new ideas or support), have you connected with your local APDA Information & Referral Center? If not, be sure you call and get your name added to their mailing list. They facilitate all kinds of educational and support programs, including respite programs. To find the center nearest you, see Information & Referral in the How We Can Help section of this site.

APDA Young Onset Center, Feb 2, 2011

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thanks for writing this We all need support for this condition,thanks again ,Gary

gary r, Feb 2, 2011

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Barbara Faveau, I have the same back problem.Doctors can't figure it out .one says its my hip and not my back,and one says its my lower spine .

gary r, Feb 2, 2011

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My wife, who has PD, and I have just read your story on the American PD site and found so interesting. It took the medical people here in Wells, England 5 years to diagnose her PD at the age of 67. Like you she was so relieved. Then last we could begin to understand how to live with this. We laugh when we say there are now three of this in our marriage We belong to a PD group in Bath and find our monthly meetings helpful and sadly always meet people worse off than she is.
Thank you for sharing your story with us.
Bill & Hazel Twentyman.
P.S. We have 3 American grand children who live in NJ as our son married an american girl.

william twentyman, Feb 2, 2011

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My story is similar except I did not have young on set. I have been very excited about the value of exercise. I participate in the Silver Sneakers exercise program. It is awesome. PD is a designer disease, for sure.

Dorothy Dykstra, Feb 2, 2011

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You are a brave and beautiful woman; your story is inspiring in whatever our challenges are and I'm fortunate to call you my friend.

Roxann Eddington, Feb 2, 2011

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Hi Kent,

I agree that the PD community has the strongest fighters! A cure is definitely what we are looking for... Amen! I think it would be good for us to keep in touch and maybe swap ideas for our support groups. krystinradke@yahoo.com

Krystin Radke, Feb 2, 2011

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Your welcome Gary! It is always my pleasure!

Krystin Radke, Feb 2, 2011

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Hi Barbara,
I don't know much about Protandim but I plan on reading up on it. For the back pain, have you guys looked into physical therapy, thai chi, or homeopathic remedies?

Krystin Radke, Feb 2, 2011

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Hi Elaine,
My ex-husband and I share in supporting the children, in fact he's always done so. What I meant by single parent was the stark transition into being on my own, only having my children half time, and when I did have them, it was difficult because I was struggling in caring for myself. I just didn't want his part in this to be misconstrued. The anxiety, depression, anger over not knowing, etc. ultimately led to our divorce. He loves our daughters dearly and I'm lucky to have a semi-simple divorce. Is there such a thing? :)

Krystin Radke, Feb 2, 2011

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Krystin OMG if I can paraphrase my 11 year old girl.... your story is my story....I can't believe our similarities only I live at the other side of the world Sydney Australia! It took doctors over 8 painful yrs to diagnosis me in my early 30's, I have two gorgeous girls and my marriage couldn't take the strain divorced now for 5 yrs, I too am an advocate for Parkinson's in Australia!!!!!!! However, I haven't been able to get my self out there to find love again, and your story gives me hope that there is a chance for me! Thank you!

Paula , Feb 2, 2011

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Hi William,
Yes, PD find a way to slither into a marriage, doesn't it? I'm from New England and would love to visit soon. Interestingly enough, I've traced my father's lineage (Chadwick) back to 1260 in Rochdale, England. If I make it out there, maybe you and your wife could show me around!

Krystin Radke, Feb 2, 2011

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Hi Dorothy,
Silver Sneakers program sounds interesting. I need something like that to motivate me to exercise on a regular basis!

Krystin Radke, Feb 2, 2011

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I love you Roxanne, my friend! Friends like you are hard to come by and are the ones who have helped me through! Thank you!!

Krystin Radke, Feb 2, 2011

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Hi Paula! Do you know how happy it makes me to hear you say that??? SO awesome. You're right, it sounds like we have a ton in common. We should think about hosting each other in our respective countries... I'd LOVE to see Australia!!! Plus, I know we'd have tons of things to share. krystinradke@yahoo.com. I'd love to chat!

Krystin Radke, Feb 2, 2011

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My story is similar to Krystin's, but with a different twist. I was diagnosed with PD shortly after noticing my symptoms; cramped handwriting and loss of balance. But the more I learned about PD, the more I believed the diagnosis was incorrect. After research I believed I actually had MSA (a Parkinson plus syndrome) but when I mentioned this possibility to my neurologist he told me I was wrong. So I went to the MAYO clinic where I was diagnosed with MSA. Krystin is absolutley correct that no one knows youR body better than you, so trust your instincts.

Deborah Wagner, Feb 2, 2011

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Dear Krystin and Others,

My story is also like yours. I started with nauseas and depression and an awkward way of walking-- and saw doctors for four years without any proper diagnosis. Digestive specialists, internists, psychiatrists etc. Then, while visiting in the States, I went to dinner with an elementary school friend (a doctor) who watched me walk across the room and diagnosed my walk as the Parkinson's gait ! Shortly after returning to Spain, seeing the neurologist and starting the medication, all of my symptoms began to recede or disappear completely and I am now leading a busy, happy life as the grandmother of eight.

Like Krystin, I experienced relief on finally knowing that it was PDand being able to fight a known enemy.

Anyone else with nausea? I have been very careful to go back and inform all the doctors who saw me what it finally was. Especially because of the depression.

Barbara Carballal - Madrid, Spain, Feb 3, 2011

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A few quick suggestions -for Carol or anyone else who doesnt know how to help someone with PD:
Don't baby the person. Encourage him/her to get out, do things, help others. Even a phone call can help someone else.Or a casserole . Or a plate of brownies!

See/read good things. Helps take emphasis off self.

Go to a mild gym class. Coordination and all that good stuff. There is a wonderful book with exercises esp for PD by David Zid:DELAY THE DISEASE. www.delaythedisease.com

Warmest greetings from Spain, good luck and God bless you all! Barbara

Barbara Carballal Madrid, Spain, Feb 3, 2011

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Hi Barbara,
I'm glad to hear that you are doing well! You sound so positive and strong! I don't personally recall being nauseous in the beginning but I've experienced it since. Constipation comes along with PD and could very well have been the cause of your nausea. For me now, I'm not sure if it's that or the Sinemet causing me to feel sick here and there. The depression, though, was the worst part of the disease. I'm glad I have it under control now. Sounds like you do, too! I love your suggestions and I wholeheartedly agree. I'm going to check out the website you suggested. Thank you! God bless! (P.S. It's so exciting hearing from people all over the world!)

Krystin Radke, Feb 3, 2011

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Thank you, Krystin. My left arm tremors and my neighbor down the road has a tremor in his right arm.
I was diagnosed with PD 3 years ago. I'm 76 and so far have no other symptoms. I am curious about
Barbara's question about nausea. I have had bouts of nausea and projectile vomiting. I take Sentimet
but can't tell if it does much good. I lowered the dosage the neurologist prescribed because my appetite diminished and I lost quite a bit of weight.
That has improved. Physical therapy did wonders for my spirit and my shoulder, which was becoming atrophied from the constant tremoring. Yesterday a friend told me about a new medication (natural, I think) that was positively affecting PD. I would love to email you as soon as I hear from her exactly what the name of the medication is and exactly what it does. If you email me, I will see that you get that information. I lived in the Walnut Creek area for many years. My ex- is still there. Thanks for what you are doing for all of us!

Mouna Wilson, Feb 3, 2011

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Wonderful story, Krystin. Thanks for sharing. For Rose Maude who also left a comment. Please contact me through Krystin who can give you my email address. I have info on DBS, which I also had, and would like to share with you. Art Fowler

Art Fowler, Feb 3, 2011

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I was told even ones with severe PD symptoms can go to several different doctors and get several different opinions. I have mild symptoms and have been diagnosed with Parkinsonism. Still do not know what to think, but the meds, vitamins, cpap, and other treatments seem to work somewhat so will stick with my doc. I started with tremmoring in L hand and still do some with my head. Also deal with Pain and extreme fatigue. It is good to have a diagnosis then we can have a point to work from. Enjoyed your letter. It was helpful.

Terri, Feb 4, 2011

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Krystin, the medication my friend told me about is
Naltextrone low dosage. I would be grateful for any
information you might have. I'll also research and
share the information.

Mouna Wilson, Feb 4, 2011

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Thank you for sharing your story. It was like reading my own story on the symptoms, to the diagnose, to the treatments. I am 47 and now seem to have terrible back problems. I have gone through physical therapy, chiropractic care, cortizone shots, and massage treatments for sciatica. I too, Barbara Favreau have same.

Gina Walsh, Feb 5, 2011

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Hi Mouna,
Yes! Please email me at krystinradke@yahoo.com. I'd love to hear about it and share it with my group. Best wishes!

Krystin Radke, Feb 5, 2011

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Hi Gina,
I will bring up back problems at my next group meeting on Feb. 19th. I will let you know what I find out. Take care!

Krystin Radke, Feb 5, 2011

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Hi Deborah,
I'm glad you went the distance and pushed until you got a diagnosis that made sense to you. :)

Krystin Radke, Feb 5, 2011

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Hi Terri,
There are so many treatment options out there that it's overwhelming! It's trial by error process but eventually we find something that works for each of us individually. Keep fighting! We are fighting right there with you!

Krystin Radke, Feb 5, 2011

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Hi Everyone,I do not have PD, but I wanted to say how much I admire all of you. You are brave and strong, with wonderful spirits. I wish you all the best in everything you do. God Bless you all

Dianna, Feb 5, 2011

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Krystin, after observing you, and seeing NO visible signs of P.D. I now understand your frustration with your lack of diagnosis. It took a movement disorder specialist to find it. My neurologist would have just frustrated you further. To Barbara Favreau
The bad back comes from walking with his spine not in alignment. A chiropractor and a physical therapist should work wonders. Good luck! P.S. I have NEVER heard of P.D. causing nausea. Nor has my Neurologist, but some of the medications sure can!

Brad Mustoe, Feb 6, 2011

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Krystin, Great recounting of your bout with this frustrating disease. I was diagnosed 7 years ago at age 50 after experiencing symptoms (which started with a twitch in my right index finger)for over 2 years. I am on a couple of meds for the pd, but the symptoms are gradually worsening i.e... balance issues, freezing in small areas, etc. the prblem that is most frustrating is that I am having a lot of problems with y right foot (the pd is on my rght side and I tend to drag my rght foot snd leg a good bit). I have had to have my right big toe fused an tat relieved that pain, but I can't find any doctor who will address the prevention of further foot problemds due to the pd. Are foot problems common with pd patients? I am still active and love to play golf and flyfish, so the foot problem is a big issue . Thanks

Mike McConkey, Feb 6, 2011

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Thank you Dianna!

Krystin Radke, Feb 7, 2011

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Hi Brad,
You may not see many physical symptoms on me at our monthly mtgs but that is b/c I time my meds correctly. I can assure you that if I don't take my Sinemet every 3 hrs my symptoms are quite evident. A yr and a half before I was diagnosed I had severe tremoring of both arms and legs, and my head/neck. I could barely write a sentence and I couldn't walk far before I had to stop due to "freezing". I didn't swing my arms when I walked and my feet shuffled. I couldn't get dressed standing up because my balance was compromised. I had problems rolling over in bed. I dealt with all of these classic symptoms of PD for over a yr before I was properly diagnosed. Don't let the short amount of time that you see me at the support group fool you. I take my meds accordingly and I usually hit my peak while I am there, which can make me move faster than normal for some reason (dyskinesia?). I was a clearcut case but I wasn't diagnosed earlier because of my age, not lack of symptoms.

Krystin Radke, Feb 7, 2011

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Your story is very familiar with my own story. Your persistence for a diagnosis is one of desperation that is true with many people. I am happy to see that you can share your experience for others who follow in your shoes.

Michael J Church, Feb 8, 2011

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To Carol, whose 68 year old mother has PD: Try to find a support group for your mom. Maybe you could join one as well.If there isn't one, form one. I find that talking about PD to others usually leads me to some sort of answer in either a direct or indirect way. I saw someone with a purple ribbon on her lapel and asked if it was for PD. It wasn't but she shared that her father has it and we discussed the very different treatments they have and she gave me some very good ideas. My mom's had PD for almost 12 years. God Bless you and your mother.

Theresa, Feb 8, 2011

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Hi Mike,
As far as I know, dystonia is quite common with PD. I just so happen to experience severe dystonia in my left foot which can be quite disabling, but I also feel it throughout my whole body to some degree. I, too, am finding that I am having more "breakthrough" symptoms while consistently taking my meds and that is just the progression showing itself, I suppose. Keep in contact with your doctor and talk about maybe adjusting your meds a bit. We need to be constantly ready to follow this thing around and bring it down as it changes!

Krystin Radke, Feb 8, 2011

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Great advice Theresa!

Krystin Radke, Feb 8, 2011

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Kystin, I have known you for about one year and have noticed your tremors, cramping, and you taking your Sinemet durning our meetings. I have people tell me that they don't see any symptoms with me. I explain to them (You learn to hide them.) You have good days and bad days. Every day is a fight. Timing my Medication, diet, exercise, acupuncture, even praying. We do everything we know to get us thru the day and look for new answers to get us thru tomorrow. This is why we network. To share knowledge.
Thank you for your tireless commitment to PD.

Ken Kuhn, Feb 9, 2011

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Krystin, thank you so much for sharing your story. I can only reiterate what others have said here; your strength, attitude and generostity of spirit are inspiring. Your story is a lot like mine, except I was 46 when diagnosed and I only went through about 2 or 3 years on the diagnosis-go-round. I, too, have a wonderful family to support me, and wonderful friends I probably never would have met otherwise. PD has taken a lot from me, but it's also given me a lot of unexpected gifts. Still, Old Man Parkinson is not my friend and I will see his back before I'm done!

Thanks again,
Marian

Marian , Feb 10, 2011

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We found out about 1 year ago that my husband has Parkinson's. He is very depressed and does nothing around the house. He basically goes to play bingo and that is it. I truly wish that I was inside his body so that I could understand how he feels. He asked me the other day if I was going to put him in a nursing home if her needed 24 hr care. I told him that was not an option. My husband is 64 and retired, the Dr says that he has had this disease for the last 13 years. This is almost as long as we have been married.

kathy dill, Feb 10, 2011

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Thanks for your understanding. It's very helpful to know someone like you who "gets it". I know you understand what I mean without having to explain very much, if at all. Hats off to you for all of the great things you've brought to our group. You're a great leader and I look up to you.

Krystin Radke, Feb 12, 2011

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Hi Ken,
It's nice to have a friend like you who just "gets it". I don't even have to explain much, if at all. It's so difficult to get people who don't have PD to truly understand the day-to-day experience. Thank you so much for everything that you bring to our group. I look up to you!

Krystin Radke, Feb 12, 2011

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Hi Ken! It takes one to know one, huh? LOL. It's nice to be able to talk to someone who absolutely "gets it". Thanks for being there and for all the great things you've brought to our group. You are someone I admire and look up to.

Krystin Radke, Feb 13, 2011

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I cannot believe doctors are not recognizing the very basic symptoms of PD! You do learn to cope with the symptoms and timing of medication, diet, exercise and prayer is so important, so education yourself! I recommend a book titled "Parkinson Disease Treatment Book" written by J. Eric Ahlskog, MD, Mayo Clinic Parkinson Specialist, Oxford University Press.

Gloria Simmons, Feb 14, 2011

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According the Medical Director of the APDA National Young Onset Center, Dr. Michael Rezak, there is some evidence that low dosage Naltextrone might be helpful for impulse control disorders resulting from dopaminergic drugs.

APDA National Young Onset Center, Feb 14, 2011

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Thanks for sharing your story. Your struggle to obtain a diagnosis is familiar, and every YOPD patient I've talked to has had that same problem. I wish you all the best in the future!

www.shakymommy.com

Brandi Elam, Feb 15, 2011

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My neurologist recommends that I take at least 1200mg of co q10 daily. Can anyone out there say that the stuff truly helps?
Thanks.

Mike McConkey, Feb 15, 2011

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I tried taking co q10 daily, about a year ago, but with no improvement, or affect, in my P.D., that I noticed. It only hurt my wallet, with its cost.

James Carboni, Feb 24, 2011

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@ Gloria- Thanks for the suggestion! I love finding new sources of information.

@ Brandi- I will check out your website! Thanks!

@ Mike and James- From what I understand, Co Q10 is supposed to be neuroprotective. I haven't heard of any proof either but the was PD affects each of us differently, the treatments affect us differently, too. It couldn't hurt to try but as James said, it is very expensive...

Krystin Radke, Mar 1, 2011

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Thank you Kyrstin for sharing your story and for inspiring others. I was also diagnosed at 35 and is still hasn't sink in yet. I've been on Ropinirole for a year now, but I don't think it's working anymore. I am leaving my email for any suggestions on trying new meds. Your opinions would be much appreciated. Also if there's anybody within the Hispanic community out there, please email me, I feel that I am the only Latina in the whole world with this illness. My email is queta70@yahoo.com Thank you.

Veronica Martinez, Mar 24, 2011

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This comment is for Rose Maude:
My father is 57 years old and was diagnosed with young onset Parkinson's 14 years ago. He had DBS surgery in January of 2009 and it has drastically improved his quality of life. I am in my junior year in college and therefore am not home very often, but even I can see a difference in my Daddy. I encourage anyone and everyone to at least look into Deep Brain Stimulation, it truly does help. I truly do not remember a lot of my life before my Dad was diagnosed because he was so young (as was I), but I can say that after watching his deteriorate before my eyes, I have seen him improve immensely over the past two years thanks to DBS. Have faith and stay strong, the surgery will do wonders for you.

Anne Cole, Apr 8, 2011

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Krystin, wow, so much of your story sounds so familiar... almost like de ja vu. My wife was just diagnosed with PD a few days ago--on her 41st birthday--after having endured the symptoms and test after test for close to seven years now.

My wife thought she was having panic attacks or going crazy. Six neurologists, a bunch of MRIs (every new doctor wanted one), a lumbar puncture, a psychiatrist, and lord knows how many other tests. Maybe it's MS...nope, not that. Well, what about PD? Doesn't look right. Chronic Lyme Disease? Or maybe you're ARE crazy...not a lot of answers, and no two doctors really agreeing.

Her final neurologist--a movement disorder specialist--has been watching her for four years and was just waiting for the FDA to approve the new "DaTScan" so he could give it to her and bin her in the "psychogenic tremor" category and send her to a psychiatrist. The carbidopa was just having a "placebo effect," the movement disorder specialist (a professor of neurology, mind you) said. Trouble was, my wife already went to a psychiatrist on her own initiative and the psychiatrist strongly disagreed...we really felt like we were between a rock and a hard place...and all the while the symptoms have been progressing.

And as the spouse--especially, as a man, because we're there to fix things (that's what we all think, anyway)--it's extremely frustrating.

So, she went through the DaTScan two weeks ago and the results changed her movement disorder specialist's tune... Parkinson's Disease, unquestionably, he said. At this point, you don't know whether to be upset to have such a diagnosis, or happy to have a diagnosis at all, with a way forward and a chance at some more cutting-edge therapies... and most importantly, she finally feels like she's being taken more seriously by the doctor.

Thanks for sharing your story...it's nice to know that there are others out there who've gone through the same frustration. You've really provided me some encouragement today.

Bart, Aug 15, 2011

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Hi Bart,

I just saw your post. Your wife's story and mine are one in the same. Wow. I hope you both are doing better now. I would think that things are much better considering you know what your dealing with and can educate yourselves. Best of luck to you both. Keep in touch! krystinradke@yahoo.com

Krystin Radke, Dec 10, 2011

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How very inspiring to read all of this ! I have been diagnosed since March 2009. I take carbi-dopa levi-dopa every 3 hours. I often have nausea. I had an unsuccessful back surgey 12/06 and a sucessful 9 hour back surgery 3/08 and have not felt "normal" since. I started with tremors 12/07. The surgeons all felt I was suffering from nerve damage due to pinched nerves.
I have just completed a blind trial for a new PD med. We have no results yet but I am back to the uncomfortable nausea.
I am so glad I opened this web site. I will check out the suggestions that have been made and take the results to my support group in Easton, MD.
BTW I do strongly support exercising. Besides being a realtor I have been teaching aerobic dancing for 35 years. I was thinking of quitting after my diagnosis but was strongly encouraged by my students to "hang in there". I'm glad I did as I feel strongly that it helps co-ordination and mental strength also. I have a "dancer" who works up front with me. I cue and move as much as I am able and I'm glad I do it !
I am 68 yrs old and thanks to my loving family and friends I will never give up - I'll persist as long as am able. Thanks for creating this website!

Linda Jablin, Sep 22, 2012

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I enjoyed reading about others with the same struggles as my own. I envy those who have some one to go through this experience with. My boyfriend of five years left me as I guess I can not do the things that once came naturally.Sad as at sixty am still the loving person inside I always was, just with balance issues. If anyone wants to talk my email address is Yachty2@aol.com. Have a great day...enjoyed reading everyones posts.

Lindy, Oct 10, 2012

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I love reading all these success stories. I would really like to connect w/ some one who has PD. I am a single mom of two kids and all i really want out of life is to be superwoman. (lol). It is hard to connect w/ people in upstate ny especially when my life of work and kids consumes me (oh and lets not forget tne millions of MD appts.

the person to person suggestions from this website did not really last. my email is dsballstonspa@yahoo.com

DEB, Jan 17, 2013

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Great stories. I wish I would have been able to find other parents who have PD raising young children over the last several years. I am a single parent with a 14 year old boy. I have been a single dad since he was 10. My physician wife chose to leave me two years after my diagnosis. I had been symptomatic and wrongly diagnosed from the time of our only child's birth, really even earlier if you count prominent tremor, major anxiety and depression which had been with me from my twenties. By the time of diagnosis I was very disabled though coping with a degree of stalwart stoicism that in retrospect makes me almost proud of that younger self receding so fast in my rear view mirror. Look at him struggling in the dark not realizing the struggle was with Parkinson's, not merely his timidity and incompetence!
My wife had her own serious mental health issues complicated by medicines that created more problems than healing. It has been terribly hard for all three of us.
I have yet to meet a parent raising kids much less a single parent with PD seven years after my diagnosis. I know only one other person with young or early onset DP. It is increasingly difficult to manage the pressures of raising my now adolescent boy. My son is great, very patient and understanding. I was a stay at home dad from his birth and we are very bonded. But my heart breaks for him and there are many days I don't know how to get help. It is hard to go shopping or drive him through rush hour traffic for two hours to and from regional football league practice and help him with his major learning disability related issues and psychiatric challenges day and night worrying and increasingly exhausted and unable to be the strong presence he needs. I won't give up but I feel increasing despair and isolation. I have found some relief with rTMS therapy for depression but it remains uncovered by insurance and therefore unaffordable as an ongoing treatment choice. I hope the light dawns on us soon. Thanks for your hopeful tone here my shaky brave brothers and sisters.
Peace.
Peter

Peter Johnstone, Apr 4, 2013

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I was diagnosed with Parkinson's disease in June at the age of 55. My neurologist just told me to come back in September and avoid stress - easier said than done! I haven't gone back yet. Over the past few months, I have developed a jerky gait and tremors in my right hand, which has become practically useless. I've been avoiding going back to see the neurologist - I suppose I've been in denial - but reading your stories has convinced me that I have to deal with the situation. Ironically, one of my clients (I'm a business communication trainer) is head of the neurology division of a major company! I'm debating whether to tell her because she might be able to get me on the trial. I have told very few people but reactions have been surprising. One friend - a therapist, would you believe - told me to take Ecstasy and then went on to complain about being overweight!!! Then again, others have been wonderful. The biggest problem for me is going out there and pretending everything is OK. My parents don't know and I don't want to worry them - on the other hand it would be such a relief to be able to "come out". I'm feeling very sorry for myself today but I'm hoping this will pass. Thank you for your stories. I feel less alone.

Trish

Trish, Oct 18, 2013

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mindygw1, Oct 30, 2013

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I am 47 y/o and am coping with some movement disorder; of what sort I'm not certain, but I am certain of what it is NOT; it's NOT in my head. I just saw my third neurologists who thinks it's all in my head. Never matter that there is a very strong family link to PD: my great aunt, grandmother and uncle all had it, and now possibly me. From what I'm reading here, most neurologists don't know how to diagnose PD.

I seem to have the worst symptoms: slurred speech, prosody, shuffling gate at times or freezing, falls due to poor balance, tremendous pain, difficulty holding my head up at times, back pain, a frowning mask and rigidity in my neck, swallowing issues, insomnia, cramping; it felt like my kegs, feet and at times neck and shoulders are experiencing one long "Charlie horse cramp": worse, as if someone heavy was standing on my neck and shoulders and wouldn't get off: I have constipation at times. These are progressions as I yet undiagnosed.

Back in 2006, my MD noticed something weird going on with my eye; the lid was closing slower than the other one when he asked me to close my eyes. At that time, I had a bad sinus infection, so we both thought perhaps this is the cause. The nerve of the lid would periodically jump. I believe, I was manifesting symptoms for a while that I'd just attribute to hypertension or being tired.

I also had episodes where my back just gave out, in 2006, without any stress or injury; as well I would get a stiff neck too. I was placed on powerful pain meds, but I didn't stay on them long because of their addictive nature. Also I had an experience of freezing while I was cooking, and that was my right hand.

2012 was when things really started to decline for me. I'd have a headache frequently in one area of my head. My legs felt restless, and I felt jittery but had no source for the why I felt jittery. I thought I was diabetic, but because I had no health coverage while all this was going on, I did not seek medical attention for some time, until I could no longer forebear. Turns out, I was diabetic, and I have gotten it under control, but those symptoms I listed did not leave.

Often the nerves in my left side would twitch, and my hand would freeze, and I thought I would have a stroke. Nope, I did not; I had an MRI to rule that out. On Mother's Day of 2012, I had the worst experience: I felt like I would faint; temporarily, I lost speech. I knew what I wanted to say and what others were saying to me. I struggled to speak. My left arm started doing weird things that I did not will it to do becoming rigid and rising up; later this is the hand where I began to have intermittent tremors.

I hadn't eaten by ten that day, so I thought that's why I was having a problem. I had been packing up to move, and was busy and tired. It was a move I was looking forward to with great joy. After 2-3 hours the symptoms waned; I could speak normally for a while, but the following day, I was back to what had started.

I don't always have tremors; mostly when I'm tired or stressed, and because of this two of the neurologists said I didn't have PD: however, in 20-25% of PD patients, there are no tremors, plus tremors range from mild to severe, and mine does.

From that day on, it's been a battle. I keep a regular sleep cycle as much as possible. I still workout/jog/stretch at least 4-5 times a week, because it helps mitigate my symptoms. The symptoms never go away. Some days are better than others. I cry when I need to. Not often; I've never been a maudlin type of person. My life's motto comes from the movie and play by the same name, "Auntie Mame", who often said, "Life is a feast, and most poor suckers are starving to death, so Live, Live, Live!" I don't let negativity camp on my grounds. I acknowledge what I'm feeling; process why, try to overcome and just be about this affair with life that's not all bad and not all good all the time. It's been good enough. I've have great support at home.

I don't allow myself to stay in bed or in my pjs. I'll struggle til I can do what I need to, and only accept help as much as I need. Independence is vital for me. Everything takes me three times as long, but hey it's my life. I sing for speed therapy, not as well as I used to, but I'm not going to allow anything to steal my joy and peace. I also pray and meditate on all things that are good, honest, just and true. I keep a video log of my symptoms and journal my MD visits. However, my doctors have not seem to appreciate this, but as a Social Worker I've been trained to document, document, document! I'm dealing with two major illnesses, and this helps me stay on top of things.

I know my head is on right. I don't need psychiatric intervention. I know myself well. I just need the right medical support. These neurologists, with one exception, that I've been to DO NOT listen to their patients. The exception was willing to give me a DatScan to prove himself right, but again I'm not covered medically so... Hopefully, this will change soon.

Glad I came to this post; grateful. There are so many people here who have had similar difficulties being diagnosed. This gives me the confidence that I've been right in standing up for my self; being my own best advocate. Thanks guys.

Lena, May 7, 2014

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