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Bluemoon

Just been diagnosed at 36

32 posts in this topic

Hi all, my diagnosis of PD was 100% confirmed a few days back. I am a 36 year-old woman & was planning to become pregnant of my second child in a matter of weeks. Just wanted to say hello. I've been reading you for a couple of weeks now but I don't know where to start, really. I have an appointment with a movement disorders specialist by mid-June, until then I don't know what I should be doing. Should I tell my 4 year-old? Should I stop working or reduce my workload? Will I be able to have more children? I'm very confused and I'd love to hear how you managed the situation when you were diagnosed. Thank you.

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Hi Blue - I'm sorry you are here.  49 yr old just diagnosed here. I'm struggling with the same - telling my kids but they are older.  To your four yr odl - don't think that she or he would understand.  I'll I can do is welcome you and offer you a virtual hug.

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Bluemoon,

Live your life the same way as you were before you were diagnosed.  Have another child if that's what you want.  Parkinson's isn't going to kill you, just make life complicated sometimes. I doubt your 4 year old would understand.

Exercise is the best thing for you.

Dave

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Bluemoon, Welcome.

I was diagnosed at age 35 almost 3 years ago. I understand how you feel and what you thoughts are. I took me a good year before I could honestly say that I had accepted what was happening to me. Now 2.5 years later I am happier now than I have ever been.

The biggest thing is don't stop anything until you have had a chance to work with your new reality for awhile. Just because you finally have a label for the problems you have been noticing does not change the fact you have been coping with those problems for many months or even years before now. This disease is slow progressing. Trust me you have time to processes and change you mind set before you make any quick decisions. For now maintain a healthy diet, keep you fiber up so you can keep your bowl regular. Keep active and exercise when ever possible. It helps and make a big difference.

Don't let the PD monster kill your entire future. It is still your future. It just might not be the way we thought it would be. Take time, reflect on where you have been and where you want to be. You will still get there. For me researching treatment and getting to know this disease intimately has really helped me decide when and what meds I want to take.  

There will be hurdles. Just like your past there were hurdles you had to overcome. Some tougher than others. Celebrate those accomplishments daily. Every morning I wake up and my legs are stiff, my feet are hurting and my head wants to pull down to my right shoulder. I slowly stretch, slip on my clothes, hobble down the stairs and let the dog out. As the dog is doing her business I take a moment and celibate the fact that I did all that without taking my first dose of meds. Every time I do something that takes a lot of fine motor skill and concentration I celebrate that I was able to do it. It sound cheesy but the more moments you can find to be happy the happier you will be.

Feel free to contact me if you need anything

Sorry you had to join our club but glad you found us.

Blessings

Adam

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Thank you all for your kind words. Your help is invaluable to me right now. I'm not familiar yet with the available meds, and I don't know which treatment will be best for me. Fortunately I'm already a very active person and exercise a lot. In fact, thanks to exercising I noticed a few symptoms that would have gone unnoticed otherwise and went to the doctor because of that. Do you guys know if it is safe to become pregnant while on meds? Or will the doctor prefer to start treatment after pregnancy? Will they tell me I shouldn't have any more children? I'm surprisingly pretty well emotionally speaking, I cry sometimes but I'm not in panic mode most of the time. I've been with these symptoms for a year so as you say it's all about keeping it up the same way.

BTW I'm not English nor American so my English might be funny sometimes :)

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Bluemoon, You write English very well. I have heard of many women having babies while on meds. I think the ones that cause the most problems are the agonist. Check with your MDS when you get in to see them.

Just curious. What country are you from?

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Hi Adam, thanks for your words. I'm from Spain. I've checked a couple of Spanish-speaking forums as well but I like this one better.

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I love Spain. My husband speaks Spanish fluently and has spent many years in Spain. He first studied in Barcelona, then in Salamanca. Unfortunately I studied French so my Spanish is not that good. Hola, and Me llamo Adam, is about the extent of my Spanish. I will have to start learning it again. I am glad to have met you and I hope this forum continues to be helpful.

 

 

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I live in a small city in New York state USA called Rochester. It is about the size of Salamanca Spain. Rochester is where Kodak cameras were created. Because my city is on Lake Ontario we like to say we are from the north shore of the United States.  

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Thanks, The Mayo Clinic is in Minnesota. We have University of Rochester, Just as big as the Mayo Clinic.

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Oh, so sorry! Forgive my ignorance. Anyway, thanks for this welcoming, I feel safer now and I'm happy to be here. It's good to have a place like this!

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Bluemoon

One thing I have learned in the last three years is life will be different but it can still be great. PD brings challenges but it also makes you view things differently. Don't sweat the small stuff- eat ice cream for breakfast with your 4 year old! 

Just know that it's ok to be angry and sad but know that you will be OK! Eventually, PD is just another part of your life. It doesn't define you. Keep a journal- I look back at mine and realize how far I have come in my journey. 

And exercise is your best medicine! 

And DANCE LIKE NOONE IS WATCHING!!

 

LAD

You may want to check out the young onset forum as well...

 

Edited by LAD

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I'll echo that a 4 year old won't even begin to understand what PD is.  I have 4 kids, youngest is 4, oldest is 13.  We haven't told any of them.  We'll likely tell the oldest 2 kids in another year or two.  By then they'll be able to understand what we're telling them, and have the emotional maturity to handle it.  For what it's worth, I'm almost 40 and was diagnosed at 38, so not significantly different from you.

 

For you, with a 4 year old, I'd not make any big secret about it.  If you aren't worried about your employer, friends/family, or whoever else finding out about your diagnosis then I'd just deal with the disease openly, but without making any production about it.  Then your child will grow up and it will just be a normal part of their existence and not something to worry or fret or get stressed over.

 

Oh, yeah, don't stop working unless you really have to, or just want to in order to be a full time mom.  PD, especially at early stages, is more of an annoyance than anything else, and shouldn't be disabling this quickly.  For that matter, have more kids if that where you feel led.  The odds of your kids getting PD is not all that much different than any random person getting it.  It also most likely won't interfere with your ability to be a great mom until both your current 4 year old and the hoped for new baby are grown and on their own.

 

Keep exercising, and if you decide to take meds now (I did when I was first diagnosed, and I don't regret that, but it's a very personal decision), or if you decide to hold off on meds until later, know that they can make a big difference in your quality of life when the time for starting to take them is right for you.

 

Like Adam me estudio Español en collegio, pero soy malo en hablar español.

 

Also, like Adam, I grew up in Rochester, New York, though I haven't lived there in almost 30 years.  I'm about 110km north of Seattle now.

 

I did get to live in New Zealand for a year as an exchange student.  My first choice was a Spanish speaking country, but the idiots at my high school in the USA said no.  I still don't get that.  Would have been awesome to live in Spain, or Chile, or Argentina (before their economy went to crap), or any of several other Spanish speaking countries.  Had an unforgettable time in New Zealand though.  Still have friends there.  But on some level I wish I'd gone somewhere non-English speaking to get that experience of thoroughly learning the language.

Edited by stump
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By the way, I'll be watching the F1 race in Barcelona on Sunday morning.  I'll have to get up before 5AM my time in order to watch it on my laptop.  Too bad Fernando Alonso is having such a torrid time with McLaren.  I'll likely tune into the Indy 500 just because he'll in that race this year.

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Hey guys, wow, thanks for your replies! Your tips are super useful. I appreciate heaps you taking some time to give me your precious advice. I'll try to do as you say.

Stump, I see you're a big F1 fan, I don't think I could wake up at 5am to watch a race. Enjoy it!

Just out of curiosity, what kind of exercise should I start doing? I've read aerobics are super important. How much aerobic exercise should I be doing? I exercise about 4 days a week, but I'm not sure if I should be doing something more PD specific, nor I'm sure about the intensity. My trainings are usually quite intense, about 1h long. Also, I'm pretty worried 'cause I'm notoriously losing strength on my left side and it's a problem when I do weight lifting. What kind of training do you guys follow? How many days a week? 

Thanks again everyone!

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Lad, many thanks for sharing your point of view! I know you've sent me a private message 'cause I got a notification but I haven't figured out yet where the PMs are in the forum haha will look up the FAQs ;) Thanks!

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3 hours ago, Bluemoon said:

Lad, many thanks for sharing your point of view! I know you've sent me a private message 'cause I got a notification but I haven't figured out yet where the PMs are in the forum haha will look up the FAQs ;) Thanks!

Click on the little envelope in upper right or if you look at your profile page I think there is an envelope there too,

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19 minutes ago, LAD said:

Click on the little envelope in upper right or if you look at your profile page I think there is an envelope there too,

Thanks Lad!

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Hi, @Bluemoon.  From what I understand, forced exercise is the ideal for slowing progression of PD, as in when you really push yourself.  Sounds like your workouts are already good.  You might want to add some PD specific exercise - a physical therapist can help with that now, while you wait to see the MDS (ask your primary care person for a referral so insurance will cover it).  Also, there are a number of exercise programs that are PD specific; I go to Delay the Disease and also Rock Steady Boxing (intense and FUN).  These help with all sorts of physical things, plus provide a group of people who can become part of your support community.  (And look into support groups;I know there are groups especially for young onset, but maybe even regular groups - it is so helpful to be with others who are struggling with what you are, too - and people will know of resources and ideas that help.)   

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3 hours ago, francesblo said:

Hi, @Bluemoon.  From what I understand, forced exercise is the ideal for slowing progression of PD, as in when you really push yourself.  Sounds like your workouts are already good.  You might want to add some PD specific exercise - a physical therapist can help with that now, while you wait to see the MDS (ask your primary care person for a referral so insurance will cover it).  Also, there are a number of exercise programs that are PD specific; I go to Delay the Disease and also Rock Steady Boxing (intense and FUN).  These help with all sorts of physical things, plus provide a group of people who can become part of your support community.  (And look into support groups;I know there are groups especially for young onset, but maybe even regular groups - it is so helpful to be with others who are struggling with what you are, too - and people will know of resources and ideas that help.)   

Hi Francesblo, thanks for that. I didn't know it was supposed to be so intense. I was actually thinking about transitioning to a milder workout routine, since like I mentioned before I'm losing strength on my left side and some exercises are becoming harder to keep up with. But after your comment I won't go milder, definitely. I'll try to look for something similar to Delay the Disease & Rock Steady Boxing in Spain, I don't think we have these particular programs but I'm sure there must be something similar, just with a different name. Here in Spain healthcare is a bit different from the US, any specific referral regarding PD physical therapy will surely come from my MDS, not the primary care doctor. So I'd rather wait & see what he recommends me. I also think it's a good idea to look for support groups on my local PD association. Will keep you posted :) 

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Hi, @Bluemoon.  Do exercises that you can do and modify those that you have to.  They say, "Use it or lose it!"  I can't run any more but I sure do walk fast.    Here are some articles with information: 

https://www.michaeljfox.org/foundation/news-detail.php?exercising-with-parkinson-disease-should-it-be-high-intensity  

https://www.nytimes.com/2017/01/23/well/exercise-can-be-a-boon-to-people-with-parkinsons-disease.html

http://www.pdf.org/parkinson_exercise_impact

http://www.epda.eu.com/living-well/wellbeing/diet-exercise-and-physical-wellbeing/exercise/

I am extremely grateful that I developed the habit of exercising regularly before I was diagnosed, but the way I exercise has changed.  I added much more intense cardio (non-contact boxing), and more balance and stretching.  It all helps.

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Bluemoon

i use PWR4LIFE...it does a lot with neuroplasticity(exercise for brain change)

http://www.pwr4life.org

 

you can order the book and they have a ton of YouTube videos. 

Dancing is really good too. 

LAD

Edited by LAD

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