Newly diagnosed with young onset PD

Hi! I'm 23 and recently have been diagnosed with Parkinson's. I'm working on finishing up my bachelors in college. I still live at home with my parents and sister, which can be helpful, but difficult as well because they know somethings wrong, but do not know that recently I was diagnosed. I tried telling them when my neuro had mentioned I could have it, but they freaked out which caused me to get nervous and anxious over it as well. I don't know much about PD or how to deal with it, but right now I have been trying not to think about it, which was fine until I tried being a normal 23 year old with my friends, but then fell and hurt my knee causing more pain. My parents don't understand why I have so much pain right now and can't walk normally, I sort of want to tell them, but don't know how. Any ideas? Also has anyone else had to complete school and look for a job? I'm super excited to begin either grad school or look for a teaching job, but don't know how to explain the physical disabilities I have besides telling the diagnosis which I'm not comfortable with at this time. I am incredibly thankful for actually receiving a diagnosis and for the use of sinemet since I was put on crutches for over a year and nobody could explain why I couldn't walk until the sinemet.

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  • Dear Critter23. I am really sorry for you. PD is not a nice disease to have. Most people in this forum will agree. Luckily, not all patients get all the nasty symptoms, so I would not read to much on internet on how the development of the disease might be if I were you.

    I really think you should tell your parents as soon as possible. Not being able to communicate your problems with your family must be extremely difficult. Anyway, what is the down-side of telling? Sooner or later they will find out anyway, and I sincerely believe sooner is better than later for you. The best of luck, finishing your bachelor and possibly moving to a master. And I am sure everybody around here (most of us much much older than you, I am 57) hope you are able to establish a good life in spite of your PD diagnosis.

    Best Kjetil

  • Hi Critter

    What you are feeling is absolutely normal it's such a huge shock to be diagnosed with Parkinson, especially at your age.

    You need to tell your parents and close family so that they can support you and help you in getting the right treatments.

    Everyone is different with PD so remember that any treatments have to be tailored to you.

    Do some research about your diet and different foods , keep healthy and exercise as much as possible.

    I was diagnosed about 8 years ago and still in a full time job and only my managers know about my PD and a few close friends.

    I am sure that you have years and years ahead of you and getting a good Neuro and keeping yourself fit and healthy are the key elements. Let your family know maybe they will surprise you .. it's a shock for everyone. But remember that out of all the neurological conditions that exist I was told PD was the kindest and best to have.

    Stay strong and look afteryourself.

    And also remember that new treatments are on the horizon that hopefully will become available very soon.

    My motto is

    I have PD

    PD does not have me.

    Wishing you all the best

  • Thank you for the great advice. I will probably tell my parents soon. The one good thing about being so young though is that my neuro is willing to experiment with different medications and therapies. I have just started more physical therapy with the Big & loud program which I think will be helpful.

  • big and Loud rocks, and parents tend to be more resilient than you think

  • Good morning critter93 ,

    You have a great advantages over most people with Parkinson's and that is your youth and time. Please tell your family and friends as soon as possible. For me it was like I had died and had to grieve for the loss of the life i had so i could start living the new one with Parkinson's. If you wait till you complete the process you will find yourself supporting them as they go through it. It is not something you don't want to go alone.

    Exercise is the best thing other than meds you can do.

    I am 62 10 years with PD and live a normal life almost free from symptoms.

    Good luck

    Do what is best for you and keep stress as low as possible.

  • Hi critter93. I am 59 and was diagnosed at 46. I would definitely tell your parents about your diagnosis. Having support from family & friends will be helpful and they can only give you the support you need if you tell them what is going on. I would also advise making an appointment with a Movement Disorder Specialist, they are more versed in Parkinson's. It sometimes takes awhile to get an appointment with one, so call as soon as you can. One more thing is to exercise. Research has found that strenuous exercise helps PD. I believe that Acceptance is the first step to dealing with PD and then take Action, do something about it. The sooner you do something about it, the better you will feel and the better you will get along in the long run.

  • Critter93, my heart goes out to you. I agree with the others to share this important info with your family. Likely this information can help you become closer and they can better understand what you are going through. You might even consider scheduling an appointment with your neurologist and sharing information with them and let the neurologist help explain it. I was dxd this year and found it quite laborious to try and answer questions and I suspect (at least at the beginning of dealing with a diagnosis) it takes a lot of energy to navigate this new terrain. Your neurologist can help you with that. I also wholeheartedly agree with Laglag about seeing a neurologist who is a Movement Disorder Specialist. You will want to consider a second and third opinion especially because you are very young in addition to the fact that Parkinsons Disease (or PD) is frequently misdiagnosed and it is very complex because each case can be different. These additional Dr visits can also help you determine the course of medication that is right for you at your stage and your age. Check out the Michael J Fox Foundation website. There is a lot of great info on there. Glad you found this board and keep us posted!

  • I have an appointment with movement specialist scheduled for February, he's booked solid until then. I'm scared to tell my parents because I don't want them to worry about me or treat me differently than my sister. They are both still working so they need to care for themselves and my sister before me. Although I do like the suggestion of having the neuro explain it to them. Thanks for all the responses back, I really appreciate the support.

  • Critter23

    Two thoughts. F irst recommend you get in touch with others like yourself who hae early diagnosis. PBBS Frontliner did a program titled Mmy Father, MY Brother and ME. Story of family with early onset. Produced by the person whom is the me. Dave Ivervin Son. He also produces the 3rd thursday webinars for MJ Fox,

    . Perhaps you could contact him as A WAy O IDENTIFY OTHERs. Among patients whom do better, They are reffered to as Outliers. Again meet them, findout what works for them, may wok for you. Check out tne S Louis APDA. Seems like they khave a support group for early onset? Bill David

  • Sweet Critter, you worry so about your family. As they do about you, I am sure. You are beautiful. Put down your worry for a moment, and let them in. Everyone is on the same team. Let their love and care for you be expressed. Then you, too,, can express yourself in the rawest sense, to them. That as a family. Right now pd is the purple elephant in the room. Just do it. The conversation begins with love, and ends with love. Consider allowing yourself to let go of the control of the outcome & their reactions, and deal with what actually happens in that moment. Often times we get hung up on what we "know" is going to happen, but actually thats just our thoughts taking over and creating turmoil in our soul. Try not to be afraid of their emotions, nor should you be afraid of expressing yours. Be emotional. Thats love. Accept and 'be'. Allow your family to love you fully.

    I am a 49 yr old mom dx'd a year ago. I can tell you are a kind, compassionate, good person. Sweet Critter, I will be thinking of you today, sending lots of loving, positive thoughts your way.

  • My heart goes out to you. Although I was not diagnosed until my mid-40s looking back I had early symptoms in my 20s as well. I can understand your difficulty in dealing with your parents. My parents are 88 and 90 and I still have to pretend that I am doing much better than I am for the sake of their emotional well-being. It can be very difficult, particularly at your age, to deal with these issues yourself and then have to be strong for others. Once you have seen the movement disorder specialist you may have a better handle on what to expect and if he does not present a gloom and doom picture bringing your parents to a subsequent appointment so they can hear from an expert that this is not the end of the world may soften the blow a bit.

    I would suggest using this forum as a means of support. It is populated with terrific people. I would also suggest staying away from support groups, at least initially, because what you would likely see are older people in advanced stages of the disease. In our area even the young onset groups members were 70 and older.

    Best of luck and please feel free to reach out if there is anything I can do.

  • Critter 93

    The advice already posted is uniformly good. Dave Iverson is a radio broadcaster in San Francisco. His documentary is called "My Father, My Brother and Me". He has also produced a DVD called "Capturing Grace", which you can buy on-line. The latter is a story of Dance for PD, a program that came out of the Mark Morris Dance Group in Brooklyn NY. It is inspiring and accurate. I recommend that you contact Karl Robb who was diagnosed at the about your age and who has gone on to write two books and is a down to earth spokesperson for PD and is very helpful, in large part because he has lived your experiences, and done so successfully. His email is asoftvoice@gmail.com. His first book is A Soft Voice in a Noisy world. My other recommendation is to get on a bike. If you pedal at 80-90 rpm at least three hours a week (doesn't matter what kind of bike. The rpm is what counts. You can mitigate your symptoms by an average of 35%. All the best.

  • The only thing I can add is keep your life as stress free as possible and laugh. I have found that laughter is the best medicine. There are lots of comedians out there, if you have a Netflix account there are dozens of them. Red Dwarf, My Name is Earl, Harold and Maud. You are at the age where you can be with friends, game night would be nice.

  • Just a suggestion to consider - it may be worth checking out whether your body is fully able to metabolise the nutrients it needs. For some people, it seems that Parkinsonian symptoms result from metabolic pathways not working properly and it can sometimes be possible to improve this when you find out where the malfunction is. If this interests you, I suggest having a look at Amy Yasko's work on methylation cycle problems which also relates to other illnesses. Best of luck.

  • Hi Critter. I was 29, when I first presented with a Pd symptom. Over the next 29 years, more and more symptoms made themselves evident. I was only diagnosed at the age of 58, in 1992. Since then I have been able to overcome the effects of most of the movement symptoms, but now, at the age of 82 I still have Pd but I am able to live an active and useful life.

    What I have earned on the way may help you a lot. I have learned how to control my walking, and other movements by using my conscious brain, instead of relying on my subconscious brain to control them, as I had always done, since being a small child.

    What I would like you to do, while holding onto a rail on the wall, above waist height is the following:

    1. place all your weight onto your left leg.

    2. See how far you can raise your right leg up in front of you, with the knee held straight.

    If you are able to lift it further than an average step taken while walking then proceed to 3.

    3. Place all your body weight on your right leg.

    4. See how far you can raise your left leg up in front of you, with the knee held straight.

    If you are able to lift it further than an average step taken while walking then proceed to 5.

    5. See how high you are able to stand up on your toes.

    6. If you are capable of standing without falling over, then see how far up you can swing your arms as if you were walking.

    If you were able to do all these movements to an acceptable level then you will have realized that your body is capable of walking properly, but you mind is not telling it to work properly!

    You were doing all of the above movements 'consciously'. When you walk, you don't think about each of the movements you make, you just tell your body to walk and it has always done so.

    Now, things have changed. You now have to consciously control all the movements.

    There is not enough space to give you all the necessary instructions. visit my website and write to me. I will email all the instructions to you, at no cost.

    We can take it all from there.

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