Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Melissab

How did you talk to others?

Recommended Posts

Melissab    2

I was just diagnosed less than a week ago at age 38. After a year of every test under the sun I was just relieved to have a name to call what was going on and "proof" that I wasn't crazy. My husband was with me at my appointment and I told my three closest friends (also coworkers) who knew of everything I'd had going on. I did not tell my mother as she is dealing with terminal brain cancer and struggling with guilt over leaving her family, but I did tell my sister. I presented to all of these people my immediate reaction, which as I said was relief. But now, a few days later, reality is setting in. The what ifs, the life I'd had planned both professionally and personally,  worries that I have no way of knowing if they'll come true. And I feel like I can't say how scared I am because everyone thinks it's no big deal-I made it all seem ok. My husband tells me not to worry because things could be fine for a very long time, and no one else has mentioned it at all. On top of that, I don't want to be the needy friend-the one whose mom is dying and who now has this disease. I guess I am wondering how you talked to people early on about what you were afraid of and how you let them know how to support you. I fear this will be a lonely road. While my symptoms are mild now, it doesn't releive the worries.

Share this post


Link to post
Share on other sites
Lonnise    60

Welcome Melissab

You have every right and reason to be "scared" as being diagnosed with an incurable condition that can cause debility especially after many many years is just plain scary.  Having said that, don't dwell too much on "what will happen" as no one truly has the power to predict the future, with or without PD.  You are young and there are many non-medical, and medical therapies that you can use to manage your "new companion".  As you will hear from many others on this forum, remember you have PD it doesn't have you!

Three things I recommend right away:   1.)  Get into an exercise routine that you will "like" then do it with commitment and persistence. 2.)  Find a licensed therapist to converse with about your "deepest fears" and your thoughts overall.  3.) Look for an MDS (movement disorders specialist) for your care team and be persistent and patient in searching for and selecting one.  (You'll probably have to wait a while, but it will be worth it).

When my husband and I shared our "news" with those we chose to tell we too tried to sound reassuring and positive about it and now it's "no big deal" which for the most part is good.  Nonetheless, as the primary care giver, I worry that I'm doing all I can, and I'm worried that my DH is dealing with his feelings and thoughts too - he's not a "talker".  Like you, I'm very concerned about being an emotional or psychological burden on my friends (my family consists of my husband, my 93-year-old mother, and my brother-in-law). Moreover, sometimes I can be very analytical in my thinking, which doesn't always resonate with my friends, so I like the ability to have candid and sometimes "debbie downer" conversations with a trusted, professionally trained peer - this is how I view my therapist.  So the monthly visits are definitely worthwhile and help me not "stay in my head" too much.

One of the first things to ask a therapist is to help you craft what you say and how you ask your support team for the kind of support you need which will obviously change depending on the other things in life, not just PD.  That's something we caregivers really, really want to know how to do, but we're not mind-readers and we  don't ever want to make our "partners with PD" feel helpless or burdensome so without meaningful conversations - that are sometimes more emotionally charged than we want - it's a balance-beam-walking act.

Best of luck with your journey and with your Mom.  Make sure you let your sister and husband, and any other close friends help you right now especially with your feelings about your Mom - that is a tough experience to live through and you mustn't let it be a silent and solo part of your journey.

Peace and blessings,

LHG

  • Like 1

Share this post


Link to post
Share on other sites
LAD    202
On July 30, 2017 at 9:00 AM, Lonnise said:

Welcome Melissab

You have every right and reason to be "scared" as being diagnosed with an incurable condition that can cause debility especially after many many years is just plain scary.  Having said that, don't dwell too much on "what will happen" as no one truly has the power to predict the future, with or without PD.  You are young and there are many non-medical, and medical therapies that you can use to manage your "new companion".  As you will hear from many others on this forum, remember you have PD it doesn't have you!

Three things I recommend right away:   1.)  Get into an exercise routine that you will "like" then do it with commitment and persistence. 2.)  Find a licensed therapist to converse with about your "deepest fears" and your thoughts overall.  3.) Look for an MDS (movement disorders specialist) for your care team and be persistent and patient in searching for and selecting one.  (You'll probably have to wait a while, but it will be worth it).

When my husband and I shared our "news" with those we chose to tell we too tried to sound reassuring and positive about it and now it's "no big deal" which for the most part is good.  Nonetheless, as the primary care giver, I worry that I'm doing all I can, and I'm worried that my DH is dealing with his feelings and thoughts too - he's not a "talker".  Like you, I'm very concerned about being an emotional or psychological burden on my friends (my family consists of my husband, my 93-year-old mother, and my brother-in-law). Moreover, sometimes I can be very analytical in my thinking, which doesn't always resonate with my friends, so I like the ability to have candid and sometimes "debbie downer" conversations with a trusted, professionally trained peer - this is how I view my therapist.  So the monthly visits are definitely worthwhile and help me not "stay in my head" too much.

One of the first things to ask a therapist is to help you craft what you say and how you ask your support team for the kind of support you need which will obviously change depending on the other things in life, not just PD.  That's something we caregivers really, really want to know how to do, but we're not mind-readers and we  don't ever want to make our "partners with PD" feel helpless or burdensome so without meaningful conversations - that are sometimes more emotionally charged than we want - it's a balance-beam-walking act.

Best of luck with your journey and with your Mom.  Make sure you let your sister and husband, and any other close friends help you right now especially with your feelings about your Mom - that is a tough experience to live through and you mustn't let it be a silent and solo part of your journey.

Peace and blessings,

LHG

Well said! Ditto to all of it especially the exercise part! As for telling people, most don't know what to say so they say nothing. The people who matter will be there for you. You go through stages...one is definitely grief...the life you planned isn't going to go as planned. But you come to accept it and eventually other things (some good and some bad) become the new plan.  "Live your list" .... Your bucket list.and seize the day! Life will be different but it can still be great!

A psychologist and keeping a journal are great tools to express your emotions and you don't feel like you are "dumping" it on anyone. I look back at my journal now and realize how far I have come since my DX 3 years ago. You will be ok. 

This forum is a great place for support. 

Keep exercising! 

 

PS - I sent you a personal message/email as well.

 

LAD

Edited by LAD

Share this post


Link to post
Share on other sites
PatriotM    797

First, forget the bucket list.  You are not close to "kicking the bucket".   Next, don't give up on the plans for your life.  Has anything really changed since your diagnosis?  You can live a long and fruitful life.  Then, don't be in a hurry to tell others.  You are not the only one with problems.  In fact, almost everyone has problems and many have problems worse than yours.  I have a young nephew with a brain tumor.  One of my tenants felt sick and went to the doctor.  She had metastatic cancer and died only a few weeks later.  What are our PD problems compared to that?  Furthermore, people don't want to hang around with people that are sick.  Talk too much about your PD and your friends and family will slowly disappear.

No-one wants PD, but MANY people have it far worse.  Live your life as you planned and don't let PD get in your way!

Edited by PatriotM
  • Like 3
  • Thanks 2

Share this post


Link to post
Share on other sites
EAN    0

New member, first post- 

Diagnosed at 46 last year, with noticeable bradykinesia, 15# wt loss, bad spinal dystonia, and tremor.  I work as a hospital physician/group leader, and had to tell my direct reports and supervisors what was going on because they all thought I had cancer. I don't tell the patients at this point ( bilateral GPI DBS has perfectly straightened my spine), but the nurses know as well- I looked like hell before the DBS, and worked between the procedures- shaved head covered by a baseball cap.  I haven't had any repercussions, but since I am in a somewhat difficult to replace position, I'm not too worried about who knows. 

I let my HR department know (ADA protections, potential disability, and all that).

Had to tell my parents/sibs/aunts&uncles going against my sense of privacy (same reason- they thought I had cancer, and my wife made the point that we would want to hear from our kid if they had a major medical issue)

Had to tell my kids (tough to hide the exhaustion, spinal tremors, and DBS surgery), a bit tougher conversation- perceptive little bastards.

Talked twice with a therapist early on, it helped and I recommend it. You can break down completely in that safe space. 

All in all, not a pity party now, but I do get tired of my parents asking me how I am doing every week after almost 2 years...(helicopter parents at age 47 is annoying)

And I just saw a checkout clerk at the hardware store with a tremor and DBS scars- we swapped stories. 

If you look well, expect an initial wave of concern that wears off over time as you stay (hopefully) functional for years to come.  Honestly, people usually can't tolerate feeling sad for someone else forever, the newness wears off :) 

I also struggled with overthinking every little symptom, but am more accepting now, making it more comfortable to divulge the diagnosis when needed, without boring the other person to tears with the details. 

It is what it is. 

Share this post


Link to post
Share on other sites
otolorin    28

Hi, EAN

             how do you tell your patients if they suspect that something is not right with you?Like if you have tremor.I am in a situation now,that I am trying to go back to work,but would want to keep the HIPPA rules.I also work in a medical setting.I feel,I might be discriminated against if I tell my coworkers or the patients.My boss and HR already knows,due to my applying for temporary disability,which is fast running out.It is good to read your post and learn from your experience as a physician with PD.I supposed you are still working.This is highly inspiring.I was diagnosed last year as well.

Share this post


Link to post
Share on other sites
EAN    0

To Melissab- In case I wasn't that clear, the best release I had with talking was with the therapist- I don't worry about burning them out.  They're good sounding boards. 

otolorin- I just say I have a tremor disorder, but I also do the MJ Fox trick and keep my hand in my pocket or in my other hand when it is bad. I got a lot of comments about my immobile neck, but I just said it was stiff. 

Share this post


Link to post
Share on other sites
Melissab    2

Thanks to all for your comments. Even a week later, I feel better overall. A therapist is a good suggestion that I should probably look into more. I appreciate all the suggestions and support!

  • Like 1

Share this post


Link to post
Share on other sites
otolorin    28

EAN-good response.I have learnt something.

Melissab-we all need to try and stay strong.Before I was diagnosed,I used to encourage my patients alot,not to give up.Now I am in a similar situation.I just have to strive ahead.Let us hope in our life time,there will be a big breakthrough that will lead to a cure.Let's keep fighting.

Share this post


Link to post
Share on other sites
EnC    0

Hi Melissa, 

I m 32 and I was diagnosed age 30 (although my symptoms started when I was 23).

After 2 years saying it directly, I found out my way of communicating it.

My speech is this.

"I have a lower dose of dopamine/My brain produces.. and to deal with that I have to take daily medicine."

I learnt that is not necessary to explain everyone about PD.

Hope you find ur way.

Best regards,

E

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×