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-   -   Just diagnosed today with idiopathic Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/207844-diagnosed-idiopathic-parkinsons-disease.html)

ElaineC 08-07-2014 10:23 PM

Just diagnosed today with idiopathic Parkinson's Disease
 
Lots to absorb...anyone have ideas on how to tell family and friends ? Will have brain MRI next week and next doc appt September 9..waiting to tell family and friends without them hovering....suggestions appreciated...Thank you

aftermathman 08-08-2014 05:42 AM

Elaine
 
Sorry to hear this news however on a positive note you have a long road to travel and who knows what may happen on your journey.

You should be able to look forward to a symptom honeymoon when your symptoms are almost fully controlled by your Meds and you have no side effects. This can last for varying times from person to person however this is your time to use. Get your finances in order for when you will need to give up work and get exercising so you are in better shape to manage your pd.

Pd is very person specific so this is the best generic advise I can give. The initial dx is a shocking and depressing time but remember you are at the stage we all wish we could be at.

This forum contains a wealth of information and you have made a good start in finding it.

Good luck,
Neil.

soccertese 08-08-2014 07:26 AM

Quote:

Originally Posted by ElaineC (Post 1087917)
Lots to absorb...anyone have ideas on how to tell family and friends ? Will have brain MRI next week and next doc appt September 9..waiting to tell family and friends without them hovering....suggestions appreciated...Thank you

i wrote most people a letter, avoided face to face. it isn't a death sentence.

ElaineC 08-08-2014 09:17 AM

Thank you so much
 
I appreciate your kind reply...am in a state of shock this morning and looking forward to the MRI next week but won't have the follow-up doc appt. til Sept 9...haven't told fam. and friends as I'm not exactly sure what to tell them. I have been walking regularly each day since back surg July 2013 thankfully..so I am going to increase that now. My doc said many people dont take rx at first but I may want to try it within 5 years...no magic answers for any of us...just take each day as it comes and stay moving !!


Quote:

Originally Posted by aftermathman (Post 1087958)
Sorry to hear this news however on a positive note you have a long road to travel and who knows what may happen on your journey.

You should be able to look forward to a symptom honeymoon when your symptoms are almost fully controlled by your Meds and you have no side effects. This can last for varying times from person to person however this is your time to use. Get your finances in order for when you will need to give up work and get exercising so you are in better shape to manage your pd.

Pd is very person specific so this is the best generic advise I can give. The initial dx is a shocking and depressing time but remember you are at the stage we all wish we could be at.

This forum contains a wealth of information and you have made a good start in finding it.

Good luck,
Neil.


ElaineC 08-08-2014 09:20 AM

Thank you for your reply
 
Quote:

Originally Posted by soccertese (Post 1087974)
i wrote most people a letter, avoided face to face. it isn't a death sentence.

I appreciate your suggestion about a letter nut will hold off til after doc follow up Sept 9..then prob a conference call to my 3 sibs...just don't want anyone hovering...
Take care

Tupelo3 08-08-2014 09:40 AM

Quote:

Originally Posted by ElaineC (Post 1087917)
Lots to absorb...anyone have ideas on how to tell family and friends ? Will have brain MRI next week and next doc appt September 9..waiting to tell family and friends without them hovering....suggestions appreciated...Thank you

Sorry to hear your about diagnosis, Elaine, but welcome to NT.

The process of telling family and friends is very individual and needs to fit yours and your family's needs. The best advice I can offer is that you keep in mind, as soccertese said, that PD is not a death sentence. You can have many many years of otherwise healthy living ahead of you. If you try to maintain a positive attitude, exercise and keep active, find the right doctor and get on the right drug regime when needed, then you should be able to have an active and productive life for a long time.

With that in mind, your family and friends will react to the way you present yourself. If you are positive and present your diagnosis with some knowledge and insight, then they will be ok. When I told my family, my children were upset initially, but when they saw that I was upbeat and motivated to do my best, they quickly got on board. In fact, my youngest daughter was a big help to me in finding the right MDS (which is crucial).

I have chosen to be fully open about having PD because I've become very active in the PD support and research community. Others, have chosen to tell only a few and remain more quiet about the disease as they go along with their life. There is no right or wrong. Just do what feels best for your situation. The most important thing is to always remember to not let PD control your life. Do what you have to do to keep it under control and then go on and live your life and enjoy your family and friends.

Good luck,

Gary

soccertese 08-08-2014 11:02 AM

i sent out a letter because i knew i would break down telling others. i included general info about pd, how i was diagnosed, my symptoms, how i'm feeling and asked for their support. i continued to work install/supporting retail pharmacy computer systems for 8 years. knowledge is king, so maybe try to find an organization like the following for your care.
https://www.evergreenhealth.com/for_...s_care_center/

enroll in the MICHAEL J FOX FOUNDATION clinical trial finder
https://foxtrialfinder.michaeljfox.org/

like smokey the bear says, only you can prevent pd and that means getting involved with pd research advocacy/clinical trials.

GerryW 08-08-2014 11:18 AM

Quote:

Originally Posted by soccertese (Post 1088018)
i sent out a letter because i knew i would break down telling others. i included general info about pd, how i was diagnosed, my symptoms, how i'm feeling and asked for their support. i continued to work install/supporting retail pharmacy computer systems for 8 years. knowledge is king, so maybe try to find an organization like the following for your care.
https://www.evergreenhealth.com/for_...s_care_center/

enroll in the MICHAEL J FOX FOUNDATION clinical trial finder
https://foxtrialfinder.michaeljfox.org/

like smokey the bear says, only you can prevent pd and that means getting involved with pd research advocacy/support.

Interesting side note: Smokey the Bear never had any children. When his wife got hot he beat her with a shovel.

ElaineC 08-08-2014 09:37 PM

with many thanks
 
Thank you so much for your kind and very helpful after a very long day feeling like I'm in a fog...your letter is a big help in putting me back on my usual can-do attitude. From others I've learned that pd is a very individualized disease process and I feel fortunate that I have a kind empathic doctor to help me through this process....plan to keep active on a daily basis and take everything going on an as usual basis...thank you again for your calming reply.

Quote:

Originally Posted by Tupelo3 (Post 1088001)
Sorry to hear your about diagnosis, Elaine, but welcome to NT.

The process of telling family and friends is very individual and needs to fit yours and your family's needs. The best advice I can offer is that you keep in mind, as soccertese said, that PD is not a death sentence. You can have many many years of otherwise healthy living ahead of you. If you try to maintain a positive attitude, exercise and keep active, find the right doctor and get on the right drug regime when needed, then you should be able to have an active and productive life for a long time.

With that in mind, your family and friends will react to the way you present yourself. If you are positive and present your diagnosis with some knowledge and insight, then they will be ok. When I told my family, my children were upset initially, but when they saw that I was upbeat and motivated to do my best, they quickly got on board. In fact, my youngest daughter was a big help to me in finding the right MDS (which is crucial).

I have chosen to be fully open about having PD because I've become very active in the PD support and research community. Others, have chosen to tell only a few and remain more quiet about the disease as they go along with their life. There is no right or wrong. Just do what feels best for your situation. The most important thing is to always remember to not let PD control your life. Do what you have to do to keep it under control and then go on and live your life and enjoy your family and friends.

Good luck,

Gary


ElaineC 08-08-2014 09:47 PM

Thank you for your reply
 
Quote:

Originally Posted by soccertese (Post 1088018)
i sent out a letter because i knew i would break down telling others. i included general info about pd, how i was diagnosed, my symptoms, how i'm feeling and asked for their support. i continued to work install/supporting retail pharmacy computer systems for 8 years. knowledge is king, so maybe try to find an organization like

like smokey the bear says, only you can prevent pd and that means getting involved with pd research advocacy/clinical trials.


Thank you for your kind suggegtion of sites...knowledge is king and I'm reading all I can..best wishes to you


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