Hello, I am new to the community here. I have had YOPD for 10 years and was diagnosed in June of 2017 at age 26. I am currently in the moderate stages of the disease.
The Bad:
After my diagnosis I encouraged my wife to come to doctors appointments and read about Parkinson's. After three weeks she decided she couldn't be happy being married to me. The personality changes I had already started to have was just too much for her to handle. I understand completely. During the previous few years before my diagnosis I had started to withdraw from family, friends, and my wife. I was so focused on keeping my job and just trying to survive that things around the house began to fall behind. After work I would come home and just sit on the couch exhausted and fatigued. My diagnosis changed everything.
The Good:
I have been diagnosed with many different things that really didn't make sense. After talking with my neurologist everything started to make sense. Depression, Anxiety, the tightness and stiffness, the speech problems, and the movements all made sense. In some ways the Parkinson's Diagnosis felt like closure. Currently I take 100mg of Amantadine/x3 a day, .5 mg of Azilect x1/day, 2mg of Trihexyphenidyl/x1 night. I am dealing with symptoms with the goal of holding off Levodopa as long as possible. With these medications I have been able to continue with my job as a engineering manager for a SF tech company. Dealing with medications and how they affect my personality has been a huge management learning experience but one I seem to be adjusting well to.
Parkinson's changed my life. It has taught me to live everyday to the fullest. I look at the future not in a negative light but something that pushes me to accomplish as much as I can, while I still can.
The three things my dad taught me as a child push me forward.
1. Never Give Up
2. Find what you love and be the best at it
3. Every day is a new day, forget yesterday's negativity and make the best of what you have today.
I refuse to give up, I refuse to let Parkinson's beat me. I refuse to limit myself. I will never give up.
Parkinson's has already taken so much from me. Now that I know what the enemy is I fight back.
I am very open at work about my diagnosis because it is obvious I have PD. If anyone has any advice for Dating with Parkinson's and how to manage symptoms at work I would love to hear it.
Written by
Hitch2020
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I love your positive attitude and what your Dad taught you! Great words to live by! Sorry about what happened with your wife it does seem that it's difficult for many spouses to handle including my own at times. Keep fighting! 😊
Hi Hitch2020: What a positive, powerful post! Your path to diagnosis is so similar (withdrawal, fatigue, and then the feeling of understanding and closure). Couple questions: You were diagnosed this year at age 26 but you say you've had YOPD for 10 years. Does that mean your symptoms started at age 16? Have you suffered from apathy and/or anxiety and, if so, what meds have worked for you? Have you found a good primary care doctor in the Bay Area? We've got a good movements disorders person but I'm on the lookout for a proactive primary care physician that's on the ball. (I wish I had suggestions for you on Dating with Parkinson's—you seem awesome! Have you tried Rock Steady Boxing in San Francisco?) Go, fight, win!
I actually found that the Azilect helped a little with my depression and anxiety. Keeping my mind busy working, or hobbies keeps the rest of the depression and anxiety away. I have suffered from apathy a lot in the past. Recently with medications I have been doing better. My doctor said that I would have been a rare case of juvenile PD if I was diagnosed when I was 16 when the first symptoms started to show up. I actually live in AZ but visit the bay area monthly for work.
I hope that maybe some of the yopd people in this group in your area will contact you. Myself I would look into starting levodopa before you get the DBS surgery. I don't really have any advice for you I hope you can maybe do some research on your own. All the best Mary
I am glad you are doing well but don't put of starting Levodopa it can change your life it gave me back mine. There are no lasting side effects of Levodopa.
The plan for now is to go straight to DBS and hopefully go med free for a while. Adding in Levodopa when I need to start taking meds again. Since I am young and the effectiveness of Levodopa can diminish with time the doctor has encouraged me to hold off as long as I can.
I agree with Bailey, my understanding is effectiveness of Levadopa remains the same , but meanwhile symptoms progress in background until reach a level where medication can't mask them. Better to use meds while they can relieve symptoms rather than struggle on with debilitating symptoms while meds could be helping. Your viewpoint does seem to be a commonly held belief though my gp doctor said same thing but not backed up by parkinson's nurse and neurologist.
I agree. That is what I have read also. My Neurologist confirmed the same. He also said the side effects, when taken at early onset, are not good. I can wait
Hi, interesting post !! Still I want you to let you know to look all the links about teeth (( some words : Amalgamfillings // NICO)) and TMJ and Parkinson (Dr. Brendan Stack, Dr. Demerjian). It's not scientific proven, but it is also not totally esoteric. I was by dentist Michael White (in London or in Lindfield, West Sussex). Very interesting, unfortunately I'm living in Switzerland and I've been there for a second time.....
Go for the Levadopa first because by the time you need DBS the stem cell treatments may be up and running. And if you’re an engineer read my posts on infrared light hat and build one. Too early for me to be sure but I seem to be experiencing some benefits after only one week.
Just click on jeeves19 in blue. that should take you to my home page and you ought to be able to scroll through my posts titles. If you can't, then Google Max Burr Parkinsons and you'll read the original articles that got me going. He's an Australian retired politician. Similarly, the internet reference you need to take you to Catherine Hamiltons blog is redlightsonthebrain (one word). It was Catherine who supported Max in building the first light therapy hat and she provides all the instructions and lists what you need. You could of course buy the Vielight Gamma 810 from Lew Lim in Toronto but this will set you back $1800 which is beyond many of us. Good luck and keep in touch.
Hello jeeves19, I highly recommend this LED light therapy n am delighted you have embraced it. Although early days to report, I have experienced my alzheimer's husband's results after 17th day's application on the Vielight Neuro Gamma, since 17th May. I am sure, the home made construction will be effective. It was striving for timely results that I immediately bought it. The science is sound, safe and promising. We are getting good nights - minimal jerks, sleep talks and hand movements including his naps at day. His appetite has improved, finishing n enjoying his food. Little waste now. It is remarkable science. I will encourage this therapy - safe and effective. The latter in recovering some functions, will ease the difficult journey with this 'ray of hope'! I am using it once a week to maintain my well being too, and use it as a supplement. When my husband's recovered 'fully' we will still use it at alternate days as a maintenance supplement. I hope my experience and that of others, especially by rhyspeace12 in this blog, help.God bless ALL
Hitch2020, I really admire your perseverance and attitude. I was diagnosed with PD when I was 70, but I had been living with symptoms for nearly 10 years. I had Cerebellar Ataxia, somewhat mild, for many years, but still held down a very demanding supervisor/management job, that left me exhausted many times. Fortunately, my wife has been very understanding. She has some serious health issues of her own. We lived in a small town, with no neurological specialists. I went to a family doctor, and symptoms that I had he attributed mainly to Ataxia and various injuries that I had, to some degree. As some symptoms were becoming more pronounced during my 60’s, he may have suspected Parkinson’s but he didn’t say anything to me, and, actually, at that time, I didn’t know anything about Parkinson’s disease, so I really didn’t have a clue, as to what was going wrong with me. I did know a little bit about Ataxia. Taste and smell were the first things that I recall bothered me, and I attributed that to colds etc. I then started having problems with feeling depressed, and, seemingly, for no reason at all. I had a good paying job, a wonderful family, lots of friends, pets, etc. Also, I was starting to get anxious and more uptight than I had before. After a few years, these symptoms had gotten gradually worse, and I seemed to be slowing down with my walking, in spite of myself. I had always been an energetic, fast walker. It finally got to the point, in my late 60’s where I couldn’t run or walk fast if my life depended on it. I became somewhat clumsy, and more blurry eyed, where I had to change prescription glasses more often. My voice was becoming a bit weaker and sometimes I couldn’t think of the right words to say, and that was so unlike me. So, I developed an essential tremor about 5 years into that 10 year period, that gradually got worse. I was eligible for early retirement at that point, so I took retirement, and worked a part time job for supplementation, for about 3 years. It became harder and harder for me to stand, snd my walking became slower. Then, I had sbout 6 falls over a period of two years. One was so bad, that I had s bad concussion, blunt force trauma and s severe bleeding hematoma. The hospital gave me brain tests- mri, eeg, heart tests etc. and still the Doc. couldn’t come up with an answer. I was having freezing episodes when I fell. I didn’t know what they were called at the time, I just know that I’d be walking and then stop for a second, and then not be able to start up again right away. The bad fall that I had was when I froze, and then my dog pulled me forward, and I just fell forward flat in my face. I had two black eyes, along with all the other injuries. I know that this is s long ‘rant’ , that I am sharing with you, but there is a reason behind it. Then apathy set in with me. My daughter stepped in at that point. She had us moved to where she and her family lived, in a large city, that had a large regional centre complex hospital! There were a number of specialists in medicine there. So we got moved and within a few weeks, my daughter set me up with a general practioner, who evaluated me, and referred me to a movement disorders specialist, a neurologist. In fact, when I went in to see the General Practice M.D. he noted that I was having problems with rigidity, resting tremor in one hand, essential tremor in my other hand, that I could hardly button my shirt, was very slow in all my motor actions when tested. My gait was Ataxic and my balance was way off. So, after a long time examining me, he told me, that, in his opinion, I had Parkinson’s disease. The GP Doc then told me that I needed to stay in the exam room, and he was going to call the Neurologist himself, and set up an appointment for me to see him very soon. So, he left the room, and I, of course, was stunned, at first, because the only thing I did know about Parkinson’s is that it is a neuro-degenerative disease, meaning that this could be bad news for me. The Doctor wasn’t gone for long. He came back in and said that I had an appt. set up for the movement disorders neurologist, the next afternoon. So, the next day, I went there, and the neurologist gave me a full neurological exam. Right away, he said he was going to put me on a trial run of two weeks for cardo/levodopa (Sinemet), three times a day.25/100 mg. Meanwhile, he was going to check all my medical records, MRI’s, EEG’s, BRAIN scans etc. for the last 10 years. He said he would have to rule everything else out, but in his opinion, it looked like I have Parkinson’s disease. So, right away, the Cardo/Levodopa made all the difference for me. The shaking was all but gone, most of the time, after the two weeks, stiffness was much better. I could button up shirts and was more nimble with my fingers. I was able to walk much better, and the freezing episodes subsided. I am on an antidepressant, which helps, too. I do Dalcroze Eurythmics exercising and stretching and pool exercising, which all helps. So my point to you, is that going on the Sinemet, for me, has helped me to be back to becoming more of a normal functioning person, compared to pre-diagnosis of PD. So, if you are getting to the stage where the symptoms are very bothersome to your daily functioning of your work duties and accomplishing routine tasks, then, perhaps, it would be wise to reconsider going on Cardo/Levodopa ( Sinemet ). I understand , with early age onset, of PD, why the specialists would want to hold off starting Levodopa treatment. Research has proven benefits of waiting. Because neuronal -degeneration affects patients in such individual ways, with PD, not all cases can be lumped into a single protocol of treatment, if there even is a single protocol. Hope this long explanation is helpful to you. It looks like you are on the right track. 👍
I have had some issues with implusive behavior with some PD drugs. So my movement specialist has recommended keeping medications with those side effects to a minimum for as long as possible. So pushing for DBS seems like it might be right for me but I haven't made any decisions there yet.
Thank you for sharing! Please look into nutrition, supplements and exercise. They alone have allowed my fatigue, social withdrawal and anxiety to diminish greatly. I have gotten my my personality and life back. Keep the warrior spirit...I am also never giving up. My partner told me he could not stay with me once I found out. It has only been one year but we are still together and better than ever now that my mental health has returned. I did tell him to not feel any obligation to stay with me...we are just taking one day at a time. I think people get overwhelmed by the feeling of burden....I let him know I didn't have any expectations of him to take on my burden. He does see me doing everything to slow this disease and I think that helps him feel supported and hopeful. You will find love again....there are plenty of beautiful souls on this earth.
Exercise is so important for me. I always feel better when I walk or do stationary cycling in the mornings before work. I find it affects my mental state in a positive way and sets a good tone for the rest of the day.
Very positive post! My mother has PD and her partner left her so I've been the one to step in and help her now that she is alone. PD is hard on the spouse but not nearly as hard for the one going through it. Your next wife (your young there's still time) will hopefully understand for better or worse. I'm 35 and I've experienced illnesses, depression,anxiety, weight gain/loss and my husband held my hand through it all. "Worse" can get more worse and has no expiration dates so I pray the next lady understands that .Keep pushing and fighting and continuing to find what works for you physically and mentally. I pray your life not only helps others who are going through what you are going through but that what your going through actually leads you to your new happily ever after. BEST WISHES!
My heart goes out to you. I am caring for my husband whose Alzheimer’s deterioration became worse since his diagnosis 3 yrs ago. He is on prescribed medication n many supplements. Some improvements but slow. Understandably. The acceptance of light therapy for neurological dysfunctions, like Alzheimer’s n PD are too slow due to vested interests?! Follow jeeves19's article!
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