February 18, 2020 at 6:27 am #17913
Hi, My name is Argya Bayuaji, i was diagnosed at 21. The symptoms like tremors, shaking hands, rigidity, slowness movement, dystonia, and gait disorder. The first i knew that, i’m massive shock. i’ve depression and sleep disorder. Neurologist give Levodopa ( Stalevo )and tremors down, and maybe on-off. Maybe i wanna hear story about the first time you know diagnosed. Maybe your story give me some motivation. i still possitive and struggling for battle with Parkinson’s Disease. i’m from Indonesia and i struggling for battle with stigma in my place about Parkinson’s Disease. Thank you very much for your sharing
*i’m sorry if my english is not good
February 18, 2020 at 2:48 pm #17923Lou HevlyParticipant
Welcome to the list!
Wow, twenty-one is really young for the onset of Parkinson’s. But everybody’s different and you may be lucky and have minor symptoms for a long time. One thing for sure is that there are no two cases completely alike.
Michael J Fox had relatively early onset, I think in his late twenties, and he still has a very active and productive life.
Things you can do that are almost for sure safe and may help are:
Eat healthy. Fresh fruits, nuts and vegies, blue fish (mackeral, tuna, salmon), organic grains and cereals; avoid processed foods.
Get a lot of exercise, do yoga.
Get a blood test and be sure your level of basic vitamins, especially B-1, B-6 and B-12, C and D are at healthy levels.
I’ve had PD for the last 5-6 years (I’m now 70).
All the best to you and may your symptoms be light,
February 18, 2020 at 3:34 pm #17927Carolyn HuggettParticipant
Twenty one is too young for onset of Parkinson’s but the good thing may be your age will work for you in keeping at bay the worsening of symptoms. I agree with Lou that a good diet of fruit, nuts, veggies and small amounts of meat and fish and organic grains and cereals is the best thing. Some people like to continue meat and I find it is OK in small amounts. Exercise is extremely important and because Parkinson’s affects older people often in their sixties or older, if exercise has not been routine throughout your life then it is harder to start an exercise program in older age. You are young and you should continue as much as you are able with the forms of exercise that young people enjoy. I love Tai Chi and have practiced it for more than 20 years and the doctors are wondering why my limbs are not stiffer. They might hurt more than they used to but I want to keep moving them as long as I can. Tai Chi is not just for old people and there are many Martial Arts focussed schools (I know young people love the Martial Arts side of Tai Chi and Wushu). It builds leg strength, inner strength, helps balance and the inner tremors you get with PD. You can still keep up individual work at the gym on the equipment and try something new ever so often as your body permits.
I try and think of my PD as another challenge that I am going to do my best to get through. I won’t get rid of it but I want to enjoy the rest of my life. Good sleep is one of the problems but you can get help for this. I started my symptoms five years ago and am sixty nine. My husband and I still dance Argentine Tango together three times a week and I hike and walk the dog daily. I am sure you can do much better than this. Find something to do that you love and that works for you.
All the best Argya. Let us all know how you are doing!
February 18, 2020 at 3:46 pm #17929ShannanParticipant
You have to remain positive and put all your trust in God. He will guide you through every step, may not be easy, but trust Him and He will be with you. Hope is your best defense and don’t settle for anything less than the best treatment. Keep fighting the fight!
Diagnosed at 33 years old and now 39 years old and have a 3 1/2 year old daughter. It’s not easy but not giving up my dreams! Trusting God every day…even the hard days.
February 18, 2020 at 4:09 pm #17954
Hi Argya, welcome to the forum. I’m so sorry to hear you’ve been diagnosed with PD at such a young age. The advice the others have shared is great and I hope you will continue to access this forum for information and support. It’s a great community. 🙂
Do you have a good support system of family and friends around you? Are you working or in school right now? I’m sure you have a lot on your plate. Please don’t hesitate to reach out with questions. There are lots of good folks in this forum who can help! 🙂
February 18, 2020 at 9:08 pm #17956
Thank you very much to all my friends who have provided support and advice for me. I have been suffering from Parkinson’s disease for 3 years, but for symptoms I have appeared since 2016. I try to be open with people and my friends, but there are other responses. Stigma on Parkinson’s Disease. When I arrived, some of them said that they were mentally ill and unable to do anything. Because in my area, Parkinson’s disease is still very rare even at my age. Some even suggested that I come to the shaman. But I refused.
Changes in attitude from the social environment began to change. Some of them even one by one away. But my family and close friends always support me. It’s not easy living life as a person with Parkinson’s Disease, prayer and enthusiasm both from within oneself and the support of others is very important.
I always try to do anything as well as I can. I always provide information about Parkinson’s Disease on social media. Always be positive and share knowledge about Parkinson’s Disease and other movement disorders. Share information about feelings of depression and anxiety to friends.
I did feel a change in my social environment. Bullying and bullying have happened both physically and verbally. But I try to keep spreading positive and useful information about Parkinson’s Disease. I also try to prove to people that Parkinson’s Disease is still capable of activity and achievement. Thank God I can give sharing sessions to students in public lecture or seminar sessions.
Thank you very much forum friends, please provide guidance for mutual discussion in this forum. Hopefully this sharing can be useful for friends both patients or caregivers
- This reply was modified 2 years, 5 months ago by Argya Bayuaji.
February 19, 2020 at 5:15 pm #17963
I’m so sorry that you’ve had to experience the stigmatized side of Parkinsons. Bullying is never okay. And my heart goes out to you. My Dad was diagnosed in 2013. And his social environment has drastically changed too. He’s more reserved and less likely to go into new environments. The people that loved him before PD still love him now, but I think that humans fear what they do not understand. And PD is a part of that. Keep spreading your beauty and education! People like you make a difference.
February 19, 2020 at 7:35 pm #17967
Thank you so much for my friends in this forum.
Indeed we cannot control our social environment. Adapt to a new environment that makes us learn a lot of new things. I have gotten bullying and cyberbullying. In my area, Parkinson’s Disease is still considered a mental disorder even though it is wrong. However, I will continue to spread content or positive messages, because who knows the positive messages that I send in my region or country can be useful information.
The struggle against the symptoms of depression that arise as well as anxiety. It is not easy indeed because sometimes people cause trigger depression. At the beginning of being diagnosed with Parkinson’s, I have had 7 suicide attempts. But prayer, family support and some of my friends still provide positive support that makes me survive, including friends in this forum. Thank you very much
February 20, 2020 at 2:37 pm #17975
Hi Argya, thank you for responding — it’s unfortunate that you have so much stigma to fight back against on top of the very difficult physical challenges you’re facing personally. You sound like a brave and determined young person and a bright light for the Parkinson’s community in Indonesia. I commend you for all that you’re doing to raise awareness and fight the stigma. You’re awesome and you have the full support of this online community behind you. <3
February 20, 2020 at 2:38 pm #17976
P.S. I am so sorry to hear you have contemplated suicide so many times. Are you accessing any mental health supports, either online or in-person? Prayer is important to me, too, and I am praying for your safety and mental well-being.
February 21, 2020 at 1:41 am #17983
At the beginning I was diagnosed with Parkinson’s Disease, I was really down. For three weeks I always tried to end my life. However, the people closest to me and my friends always support me. At that time I was really sorry.
I look weird when in a group because I can’t control my tremors and slowness. But some of my close friends always give encouragement and prayer and positive conditions.
After I went through phases of depression, I started living again from the beginning as a person with Parkinson’s Disease at a young age. Physical and psychological conditions that are less stable, I still go through until now. In my area, the stigma is very strong indeed. However, I still try to be better and struggle with Parkinson’s disease to give positive things to the community, of course with prayer and encouragement.
Access to mental health is good enough. But unfortunately my case is so rare that they say they can’t. Sad and angry, but I still respect life.
Pride for me and maybe Indonesia because I can join in an online community like this. Thank you so much Ally and My Friends. Your story makes me excited. Do not hesitate if you want to exchange stories.
February 24, 2020 at 9:55 am #18001
I’m very sorry to hear about all the pain you’ve had to go through on top of the diagnosis. Parkinson’s is such a horrible disease, by itself. And we need support from anywhere we can get it. It sounds like your friends and loved ones have emerged as a beautiful resource. And your attitude seems very positive. I have no doubt that you’re inspiring people with your story.
My Dad has Parkinsons, and he feels the same way about being in public places. It’s uncomfortable to look different. But one thing that has helped him is finding a community that shares some of the same struggles as him. He has many friends who also have Parkinsons, and there seems to be a quiet understanding about the disease among them.
Those emotions all seem like normal responses, to me. I’m no specialist, but I can imagine that having an illness like PD really shakes your whole world. But keep fighting! It’s comforting to hear about people who are as strong and determined as you. I hope I’m so fortunate as to continue to read about your experience.
February 26, 2020 at 2:02 am #18032
To: Mary Beth and All beloved my friends in forum
I feel lucky and very happy to be able to discuss in this forum. Thank you very much for the friends in the forum for giving advice so that I get insight. Sorry if possible I made a lot of themes or asked about Parkinson’s Disease and movement disorders. I hope you don’t get bored answering my questions and sharing information about PP or other movement disorders. Thank you very much everyone 🙂
Keep Spirit and Positively 🙂
February 26, 2020 at 8:53 pm #18049
Argya, I’m loving your feedback and ideas. Keep them coming! I think talking about PD makes it easier to manage.
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