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When do you tell people your diagnosis?


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#41 MShep

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Posted 05 May 2014 - 04:07 PM

Hi Didi:  Please do not think you are in any way a downer.  Just the opposite.  Being honest as you are is actually uplifting as so many just do not want to talk or think about what is going on with this

struggle called PD.  As my Neurologist explains, every single one of us "parkies" (slang) is different in their symptoms.  Not all have the same symptoms and most do not have all of the symptoms which are talked about in many books and even on the net.  Just as all of us are different in our symptoms, we are also different in the progression, and dependent on our PMD's direction, we are different in the treatment.  Yes, I have slow progression, according to my DR.  It has gotten a little faster over the last few years.  I had to stop work because of the nature of my work for my own safety and more importantly, the safety of others including the customers.  Just because I had to stop;, does not mean your husband will need to.  Please don't think that.  If he is playing volleyball, then let him play volleyball or golf or run or work out, or anything he feels comfortable doing.  Every on of us is different in our battle.  No two are exactly the same.  We have similarities in our symptoms but the way it effects each of us is different, physically and in my own estimation, mentally.  That is why I try to stay positive even when my body is not cooperating.  Please keep up the good thoughts and your support will be a great asset to your husband.  I wish you well with your Neuro Dr.  As I mentioned before, the Neuro Dr. will be your best friend, be honest and not "honey coat" any of the symptoms.  Hope all goes well for you and your family.  I am behind you both, whatever the outcome, as long as it makes you both happy. 



#42 PatriotM

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Posted 05 May 2014 - 05:35 PM

Didi,

 

In reading your post, I am reminded of the "Serenity Prayer", which is basically "God, grant me the serenity to accept the things I can not change, courage to change the things I can, and wisdom to know the difference". 

 

Whether you're religious or not, this prayer is good advice and I try to live by it.  In the case of PD, we need to accept that we have a nasty, degenerative disease and have the courage to fight it (with exercise, meds, etc).  If I do everything that I can to fight PD, then I've done my best and I must accept whatever happens.  It is certainly not healthy to dwell on being sick or worry about the outcome.  Learn to live every day to its fullest and to live one day at a time.



#43 MShep

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Posted 05 May 2014 - 07:17 PM

Dear PatriotM:  Well said.  Having the ability to have the mind set of that prayer is just as important as the medicines and is a medicine on it's own.  Again, Well put.

MShep



#44 New normal

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Posted 05 May 2014 - 07:58 PM

Thank you, PatriotM.

#45 Annikin

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Posted 05 May 2014 - 10:45 PM

Well said, PatriotM. I too find that prayer very calming. My Mom used to say "Let go and let God". Both allow me to go about my day realizing that I only have control over a few things - one of them is how I choose to react to this disease. I chose to be happy and live each day as it comes- grateful for that day alone. I often wonder why we only dwell on why God allows bad to enter our lives and why we do not ask daily what we did to deserve all that is good that day.   Its all in the attitude and gratitude. 



#46 Didi

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Posted 07 May 2014 - 05:48 PM

I've been very busy, and didn't have time to post.

PatriotM,  I am a christian, and we have a very active and strong faith, and know the Serenity Prayer well.  I was just having a bad stretch. Last week I was struggling a little with my own health issues and then seeing him struggle, got me fearing a wee bit for the future. I guess I had read quite a few talk about very slow progression and my thinking of slow was a little different than others -- so it was a bit of a shock. I've been trying to hope of course that my PWP will have the slowest of progressions :)   Don't we all.  I'm really sorry if I sounded discouraged or brought discouragement to anyone else. I really never want to do that. I like to talk faith and be positive. But occasionally I fall.  But God understands. He picks me back up and helps me get back to my usually positive self. My usual coping mechanism is thankfulness. I like to have an attitude of gratitude. And so today I thank you for your words of encouragement, and for trying to help me quit complaining.



#47 noah

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Posted 12 May 2014 - 05:17 PM

I am struggling with whether to tell my boss. I work in a different building so don't see her much but she is due for a visit next week. On the one hand I think she should know. On the other hand I think that I don't really need any help from her right now and I don't want to be the topic of conversation!
Yugg what to do

#48 Annikin

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Posted 12 May 2014 - 05:35 PM

I fcae that same dilemma. I will keep it to myself for now- too many implications. Best of luck with your decision.



#49 Delta

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Posted 12 May 2014 - 09:21 PM

I'm in a different position than most in that I'm stay at home mom and do not work. So I do not have the same dilemma as you two. As a person who has come out I believed I was hiding my symptoms for many years. I discovered after the fact many people noticed there was something the matter much earlier than I suspected. I live several states away from my family and thought no one knew what was going on. I only see my family once a year and thought I was doing a great job hiding.
As it turns out my family knew something was the matter ,they just didn't know what and were too polite to say anything.
When you finally do decide to tell people you need to factor in that your condition is probably much more obvious to them earlier on then you think.
It is always your decision when to tell people and don't let anyone ever take that away from you.

#50 johnnys

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Posted 14 May 2014 - 05:39 AM

 Chronic worrying about our future outcome is a very self defeating exercise.many times I do wake up with lowered feelings nowbut I do know the remedy.I usaly think of something that needs attention I and i rise and never am bothered by those feelings again ,till I wake the next morning.

I now wear my NFP wristband and unless i meet another parky i seldom talk about it.I do volunteer with a NPF group,Parkinson cafe.

My family is indifferent about my PD .But then I to was indifferent when my father had it.So I remind myself of not making it a issue.

Now Im going fishing,have a wonderful day.






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