I am 37 years-old and was diagnosed last year with early-onset tremor-predominant Parkinson's Disease. I've told my family the news and most had no idea what to say to me, except "I'm sorry" over and over. I've told my closest friends that I have PD, and they feel uncomfortable around me. Many people say "you're too young to have Parkinson's" or "but you look so healthy" and other comments.
I'm just wondering if there are any other early-onset people on this site who have had similar reactions and would like to know how they deal with the comments. Sometimes I have to remind people that I am not contagious because they looked so shocked that I could have PD in my 30s. I have a very long road ahead of me and am trying to stay positive!!!
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AnneW
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Hi Anne,
i was dx on november 3rd 2011 , i am 52 years old and was told last week that i have prob had PD for over 10 years, bit of a bummer , went out on friday 30th to met some friends in a pub, some i have not seen for a while, mixed reactions from quit a lot of them, some would not look or talk to me , some with horrer on there faces, for most of my working life i have been in volved in the Media in Scotland , very well knowen in these circles and now i feel that i am a lepar ( going to get a bell ) its hard but iam sure you will adapt and not lett it bother you too much, i have severs tremor on the right , and now my head and leggs are going of on there own directions , its funny some times and not at the same time ,
keep yourr chin up and we all on this site support and help each outher on a daily basis, as you can see my spelling is crap and i can no longer write , but i will not let this get the better of me and nor should you
Hi Anne....I was diagnosed with PD, Oct. 1997...at age 44. I had been having problems for at least 2 years prior. When my mother died I was very depressed and that is when the tremors started. Was on right side and started with my hand. PD progresses faster if you are stressed so try to avoid that as much as possible. I worked for the Army (civil service) and was so stressed day to day I asked for accommodation and they were great in doing whatever I needed. I was able to work about 5 years and then took a disability retirement. I found it best to let family and close friends and my work colleeges know I had PD. I also gave them pamphlets and Internet links to read about PD, and I bought books which after I read I lined to to others and also hit up th library for any and everything I could find. I made sure each of them knew the basics and that it isn't contagious, and after learning all I could I was able to answer any questions they might have. Good luck with your journey....remember...you are not alone and many of us here are always here to help in any way you need.
Remind people that Michael J. Fox was diagnosed at age 30. Most are still very UNeducated about Parkinson's Disease and only associate it with the elderly. You will be spending a lot of time enlightening your friends and giving your family a crash course in the wide variety of symptoms. More and more people under the age of 50 are being diagnosed with PD every day - I think if we had an accurate way of getting statistics on this, everyone would be shocked at the sharp increase in young onsets.
Anne, I was diagnosed 6 yrs ago at age 6o----not as young as you and initially I was mad as hell but soon realized this was a waste of energy that I needed for other things...like living My next ahha moment was 'I couldn't give PD back so I better learn to live with it ! In addition to being positive is to have a sense of humor and learn to laugh.....most times at yourself......you'd be surprised how this will put others at ease. It is ok to get frustrated, we all do----surround yourself with true friends who truly know, love and will support you on bad days as well as good ones, be open and honest about the PD---it is nothing to be ashamed about and considering alternatives I will take PD. Enjoy life don't give up trying new things but take care of yourself, don't overdo when fatigued and always know this site is full of people expierencing similiar feelings and will listen. God bless and have a wonderful 2012. Gail
Hi AnneW,, Yes it's very upsetting to recieve the PD diagnosis so young. We here in Ängelholm Sweden, Have a very young man who recieved the diagnoisis at the age of 34, he had had symptoms from the age of 29. He worked as Head Couch för our IceHockey team-Rögle. He has had a really bad time with PD. At help him come over the PD, he started "The Shaking Generation". His Name is Björn Hellkvist and you can reach him via Facebook.Go in to Shaking Generation.
As for people trating you different, it is soley the fact they don't know the "why's, where's etc of PD. Take a group of your "closest friends" have them for coffee or something and explain too them PD. This will only help if, you, yourself fully understand PD. Get some simple information from th closest PD Group, Hospital etc, read them yourself and hand out copies to your friends. If you have questions write to me. Bye, Hope this helps, I have had PD since 2003.
I believe, and this is what I have said on this site, is that people don't know enough about PD. What we don't know frightens us. I was guilty of this when my cousin was diagnosed at an early age and was not as supportive to her initially as I should have been. However, by the time I was diagnosed I had found out a lot of information My initial reaction was disbelief. I try to live life taking things day by day, some better than others. Never give up, rest when you need to, exercise when you can and above all keep tuned to this site, which is brilliant.
I am sorry to hear you have pd so young. I had the diagnosis recently and am trying homeopathy and nutritional supplements, acupuncture, yoga and swimming. I try to keep moving and have fun. Am also thinking of going for voice training to keep vocal chords strong.
Hi Anne, I was 64 years old when I was diagnosed with Parkie, as I call it. Not as young as you, but young enough to feel pretty devastated at the time. The only other person I had met with Parkie was my father-in-law, and I was pretty frightened at the time. I am now 75 years old and still fighting.
I still believe that there will be a cure one day and as Tom Isaacs says, the day will come when we can say, "I used to have Parkinson's."
Keep yourself active, mentally and physically. Don't be ashamed to rest when you need to. Learn as much as you can about Parkie and inform others. The general public are sadly misinformed since they seem to think of it as an old person's problem. I have been invited to speak on "Living with Parkinson's" and they are always amazed when I quote the statistic that one in twenty is under forty.
There are a lot of us older Parkie people who are working hard to raise funds for research even though we realise that there is not likely to be a cure in our lifetime. We are not giving up. Don't you give up.
By the way, someone recommended voice training. I can highly recommend the Lee Silverman technique..
I know what you are going thru, having been diagnosed at just 35 years of age. I think that it is important to go on with life as you normally would and begin an exercise program immediately!! Do not put this off, grab the tiger by the tail right now, and don;t let go...
As I have mentioned on previous occasions, I am a firm believer in exercise helping PD. The only downturn I have found is that my meds always seem to go off quicker when I exercise. Does anyone else experience this? Will continue to exercise.
Yes, stay positive, you have some control over the progression. No need to be sorry. You could have a long productive life, one day at a time. Or not. It's different for everyone, almost a designer disease! Have fun, in the meantime. We're here, we identify and we understand!
AnneW, I am new at this too and feel that I can't offer advice at this time because I am also trying to find my way. This website is full of invaluable advice and information. I'm still navigating my way around it; but it lends a voice to this disease and takes on a humanistic approach instead of the clinical side.
I exercise 6 days a week and feel this has had a great impact on my ability to move about more easily. It helps with the stiffness that I feel when I awaken each day. I call it feeling "rusty". A litle exercise takes away the rustiness. I'm thinking of you and wish you the best. Please keep us all updated on how you are doing.
Hi anne. I am 38 and dx'd early 2011. I too told family and a few co workers and my boss. My co workers understand as they went and read about it. Family and friends didnt understand at first but are slowly getting there. I have started to make youtube videos since i live no where near family. I talk about me the wY i feel the meds etc etc. I am starting to make alittle comeedy with it. That way they can see its ok and i am good with it. For now. Lol
PD is a bummer, sure, and early onset adds all kinds
of layers.
Here's my random advice:
1) Exercise for strength, flexibity, and endurance.
2) Avoid depression and seek help immediately if it appears.
Depression in PD is very common and makes everything else worse.
3) Read enough to be an informed patient, but don't obsess. BTW obsessive and compulsive behaviors are also commonly associated with PD (or its dopamine agonist meds--be alert.)
4) Tell anyone who needs to know but don't rattle on and on.
5) I have a very visible tremor that manifests most when I am in public.
I don't wave it around in people's faces but I don't hide it either. A tremor
episode is a good time to bring up the disease if you want or need to.
6) I get very few brainless comments. IF people are too solicitous I say "THank you, I can do it myself." IF people are all upset and feeling sorry for me I say "Everybody gets something. I'm doing well."
7) Stay in contact with your PD community via this web site and any real people you can meet locally. We need peer support. Civilians don't always get it.
8) Make sure your neurologist is a) a good and caring doctor, and b) a PD specialist. My first neuro was neither and I dumped him forthwith.
9) Check out the movie products I mentioned in the QUESTIONS section of this site.
10) Cultivate an ATTITUDE OF GRATITUDE for the good things in life.
I was diagnosed in 2006 when I was 43 years old. The neuro I saw then did a retroactive history and determined that I'd been having symptoms since I was 36 or so.
Sometimes people forget that I've got something going on. Hell, sometimes I forget. But then I push myself too hard or don't get enough sleep or miss a med dose and I have bigger issues than anything I might experience when I'm forced to educate/remind people that I have PD.
Here's what I needed to work on:
1) Invisible health challenges are ALWAYS weird for other people. Sometimes I need to remind people that I have PD and that there are just some things I can't do anymore. If I'm being pressured, or if the assumptions of others seem to be pushing me to do things I can't keep up with, I tell people that PD just won't bend to their expectations. My friends have been very accepting of that. I won't say that things haven't changed in some of those relationships, but for the most part they've been minor changes.
2) I'm tired more often than ever before and sometimes I need to make time to rest in the middle of the day. Some of that fatigue is due to med side effects and some is the disease. I refuse to pretend I'm not tired when I am. I don't have that luxury anymore. Pushing myself to ignore the fatigue makes things MUCH worse, so there's really no point. This was something I had to share with friends too. It might be the one thing that was hardest for them to understand.
3) I needed professional help to process the grief I experienced over losing my job. I didn't get it. Six years later I'm finally seeing a therapist because I lost a career that made me feel valuable and whole. I do other work now...but teaching was the love of my life.
4) I have some cognitive changes because of PD. This is the most annoying part of PD for me. My memory works differently now and I'm not the rapid problem solver that I used to be. My frustration level is probably highest when it comes to this fact. The cognitive changes resulted in a significant increase in anxiety. Sometimes the anxiety is triggered by really small things and I worry about living with it long term. I haven't tried medication for it because I don't want more drugs. I've accepted that some pharmaceuticals are going to be necessary. But I'm also using complementary methods of health care/self care to cope with things like pain, stiffness, insomnia, nausea, brain fog, etc.
A few months ago, someone said "I have a hard time believing that you're 'sick'. You look fine to me."
So...I think complaining about the way I feel is a waste of time. I didn't do it before I had PD and I don't do it now. But I must have been frustrated or something that day because an answer just popped out of my mouth before I could think about what it might make my friend feel like.
I said, "Don't worry. Soon enough I'll be incapable of walking, talking or thinking and I'll have forgotten who you are. Then you'll have all the reminder you need." She ended up crying and running out of the room and, I have to admit, I felt a little badly, but I didn't feel sorry for her. I don't feel sorry for myself either.
I am angry at the disease. But I think that's okay. It doesn't mean my attitude is bad or my life is over. I'm just mad at the disease. Anger is a healthy emotion. What I *do* with that anger is up to me. I don't let that emotion or PD stop me from living. I just live differently now. If people need to be educated then I'll step up sometimes. By the same token, I don't feel the need to be a "poster child" for PD. If I feel like talking about it, I do. If I don't, I don't. I'm okay with it about 75% of the time.
Sorry to ramble about unrelated things. I know I don't really have much to say. I just really "feel" your dilemma -- when people don't "get it" or don't remember...or plain old don't think about what they say or what they ask you to do. I read the responses on this site and I think most of these people are more gracious or patient than I am. Maybe you need to just give yourself a break when it comes to other people. I think that whatever you do/say needs to be right....FOR YOU.
P.S. One of the things that helped my friends and family was watching videos of people with PD.
For those that wanted facts, I gave them the MJF Foundation website and the wemove.org site (because of the video). For others, I just told them to YouTube PD. There are a surprising number of videos made by patients and friends.
I am 49 and was diagnosed with young onset parkinsons in Oct 2011. I have a tremor in my right hand and the doc said it could possibly remain the same for the next 10 yrs or so and that i could live a fairly normal life for 20 to 30 yrs or more. Once I got over the initial shock I thought "oh well..to hell with it Parkinsons will not rule my life" I`m facing it with the attitude that there is nothing wrong with me and facing life full on....with a big smile on my face...laughter is the best medicine! The reactions I`ve had from people is "oh I`m so sorry to hear that" they dont really know what else to say. I have been trying to hide my tremor when I`m out because I still feel that people are staring at me....but why should I try to hide it, if people wanna stare then I say let them stare, they`re the ones with the problem not me!! Anyway be bold, be brave and dont forget laughter is the best medicine
Best wishes
Andy
P.S. I`m on Facebook as Andy Clegg if you wanna look me up x
Wow!! I am absolutely overwhelmed with appreciation to everyone for your wonderful comments!!! Such positive and supportive people on this site. This is the first time that I have ever read or written a blog. It is amazing that all of you took the time to write a response.
I'm doing my best to stay physically active by exercising 5-7 days per week. When I slack-off at the gym, I basically remind myself that I have PD and need to keep moving! In October I participated in the "Moving Day" charity walk which was sponsored by the National Parkinson's Foundation. I raised $500.00 in 6 days (found out last minute!) and gathered four friends to complete the walk with me in DC. It was a great day and helped lift me out my 'pity-party' that I was throwing myself.
I've realized that feeling sorry for myself is a waste of time and counterproductive. In the last three months I've really started to exercise (and have lost 8 pounds in the process!) and be more active. No more sitting around wasting time for me! I've kind of snapped out of it, so to speak.
I've told more friends about my PD. For most of them, I think they need to deal with the shock too. Once they got over their initial shock, they seem to be okay, for the most part. Many don't want to bring up the PD topic, probably because they are somewhat uncomfortable. But, the more I casually mention it, the more they seem to handle it. I don't talk about it that much because there are so many other things, fun and wonderful things, to talk about. I think that once I fully, truly accepted it, I was able to help others around me accept it. I was shell-shocked at first, but I'm doing much better, mentally, as I try to handle this new chapter in my life. Sometimes when I make a PD joke around my husband, he waits to see if I'm laughing before he will react. He still is having a tough time seeing me struggle and it is very hard on him. My heart would break if he was diagnosed with some nasty disease, so I understand why it is so hard for him.
Thanks again to everyone for the overwhelming support. Really awesome!
Well thank you Anne, for posting and for responding as you did. This really is an awesome community.
Thanks everybody, this thread really moved me. Literally…I put on my hiking boots and charged out the door, climbed a hill, and embraced my city as the sun set on the bay.
Hi, I was 42 with symptoms that went back into my 30's. I have a few PD friends in their 30's and one in their 20's. All are doing great, truly. I found people around me didn't know what to say so I said it for them. I put, in the early days, a blog out to friends and family to help them to understand how I was and to tell them what I needed from them. This was a huge success and whilst I don't need to do it anymore I would recommend it. For me the second thing was to say OK my life is going to change, and that's fine. I had to let go of the girl I was and the things I used to do, and welcome the new me. I also decided to take things into my own hands. Instead of my situation causing me to make changes and to do things differently I just went ahead and re adjusted my whole life to make sure I stayed one step ahead of illness. This made me in control, and I still am. I am certain things are going to be ok. Take a deep breath and just think of this as the biggest challenge of your life. Hard things have a funny way of bringing out the best in people. If I can ever do anything to support you just ask. C
I sympathise with you, most of us get Parkinson's at a later age, when we've had the chance to do some living.
I was dx with P about 12 years ago, aged 63. I told everyone whenever it was convenient (I didn't make a big announcement!) and have had no adverse reactions from anyone. Perhaps because I tend to just get on with my life and act as normally as possible.
I enjoy cruising (Big boats, not flash cars!) and always tell my newly met dinner companions and have never had any problems with them.
I think if you just carry on doing the things you've always done, as far as is practical, and show others that you are not going to be beaten by this thing, then people will react positively, too.
Also, I never refer to it as Parkinson's Disease - it isn't a disease, it is a condition.
first time i have done this so bear with me i am not very techno
you are not alone my husband was dx @ 37yrs old now had it for 28yrs now aged 65.coped well for many years.started having problems with hallucinations 2yrs ago & had to be taken off most of his medication and not given anything in place of them.he has now lost most of his mobility,i am now his full time carer.
Please go to Micheal J Fox site and read everything you can find. Educate yourself as well as you can. There are PD sites in England that are very good. Early onset PD is so very sad. The ticket is exercise, education and find a PD Neurological specialist, stay well.
Hi Anne was 48 when diagnosed but had symptoms with for 10 years or more before. There are younger diagnosis around. Be positive, keep smiling and moving it helps keep neural pathways open.
Cheers
Les
AnneW,
I was told right after my 28th Birthday that i had PD. Not the Birthday present that I was hoping for. I will be 43 this December and I am still hanging in there, sometimes i feel the thread is weakening from which I dangle but i hang on nonetheless. You will have good days and bad days, some awful days, but just remember you have PD but you are still you.
Stay true to yourself, your beliefs and stand strong. You will probably will have "friends" walk away from you away from you and distance themselves when they learn of your illness. Just keep in mind that these aren't friends, so they are really doing you a favor and making room for the ppl that are truly going to be there for you and support you. Sometimes it is surprising who steps forward when others step back.
Always follow that inner voice that guides you........ and you will be ok.
i wish you all the very best AnneW. and I am hear if you every need someone that understands what is it like to have PD at such a young age to vent to or ask questions. I may not know the answer but i will try to help you find one.
Hi Anne! You are definitely not alone. I am 23 and was just diagnosed. In my case, it was almost a blessing because I was put on crutches for over a year and nobody could figure out why I couldn't walk. While I still can't walk normal, it feels great just to have both feet on the ground. I have only told my 2 best friends about this and while they are very supportive and helpful, I'm trying to avoid telling others, I normally just say I have a neurological condition if somebody asks. For me the best way I handle PD is trying to forget about it and lead a normal life. I still have therapies, but even when I'm there I don't think about it that much. I would caution to think about what you are planning to do before doing it. I decided for Halloween, I would go to a haunted house with my friends, which unfortunately did not go well and now have to deal with the consequences. Hope that you get the support you need to live a full and happy life.
Hi Anne: My name is MarkU and I live in Kalamazoo, MI. I was initially diagnosed when I was only 36 but it took about 5-6 years for me to get a definite diagnosis because I have no resting tremors only action tremors. I am now 54 years young, Divorced and I have lost at least 90% of my friends and family because nobody really understands what we go thru daily just so we can function. I still live alone but I did have an accident last November where I feel down too many times over about a 4 week period and suffered a spinal cord injury that made my entire body so tingly that I couldn't even stand. Well this did have a happy ending. I did end up spending about 2 1/2 months doing rehab after the surgery because I couldn't even walk. Now, I am walking better than ever and I am doing so much better I might start driving my own car. But, I am having the DBS surgery within 6-8 weeks. I guess the point of my story is you have to get very good at telling people that u have PD because nobody understands why we get so mad so quickly and even manic at times along with panic attacks, which didn't start until about 2014. So, prepare yourself to become even crabbier and hot tempered at times which could be caused by the Sinemet or the disease. I recommend that u start taking a multi vitamin daily. I didn't take one for years and just started about one month ago and my energy has gone way up and I take less naps during the day. Also, exercise daily especially lifting weights. I just started lifting weights and the strength in my arms and legs have never been better. If you want to red more about my struggles living with PD, just let me know. Bye for now.
Anne, I was just diagnosed a few months ago at 38 years of age. I'm definitely familiar with the, "But you look so good" comment. I know this is probably old information but exercise seems to be the ticket for me to feel better. It seems pretty much as effective or even more so that the c/l that I take.
I see your post was 7 years ago. How are you doing now 7 years later?
I'm soon to be 37 years old, I've been diagnosed with eplipsey then told I had pseudoseizures. Now, I am being told I have Parkinson's Disease. I have had these awful uncontolled jerks for years, that started with making my head turn fast from left to right or right to left. Violent jerking that causes pain. They progressed to making my legs buckle, head go backwards.. family members always said I looked like I was doing a "standing worm" pose. From there it progressed to making my body lunge forward and make me verbally make these strange and loud sounds all without my control. Now my left arm comes to my chest, hand in fist form and tenses up, head goes backwards, or sometimes forward in my lap and my right eye rolls. I can't see during these episodes and they are very frequent. 2 dozen or more in 24hr. These make me fall if I'm not sitting. My speech has changed and certain words I'm no longer able to pronounce. My memory is awful to the point I walk from one room to the next and forget why I went in there. I will leave my water running for hours because I forget to turn it off. Anyone out there have advice? Experience? Anything?
hi Anne , I am 48 and was diagnosed at 33,, I hasn’t been easy cause I live in a small country, and people thinks that you can only get this disorder after your 60’s, they don’t know about it, and I get those annoying people looks that make feel like an alien, so I have to explain it to my friends who have been very supportive, and don’t waste my energy in those who walk away. Better if you start taking care of yourself, exercising on a daily basis , watch your diet, go to your physician every time you need it, and stay positive, if you have more questions I’m here to help.
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I'm thinking of you and wish you the best. Please keep us all updated on how you are doing.
The reactions I`ve had from people is "oh I`m so sorry to hear that" they dont really know what else to say. I have been trying to hide my tremor when I`m out because I still feel that people are staring at me....but why should I try to hide it, if people wanna stare then I say let them stare, they`re the ones with the problem not me!! Anyway be bold, be brave and dont forget laughter is the best medicine 
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