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Swamper thank you for your openness.  No one knows how fast the disease progresses.  I think you made one very important point.  In that you talked to your husband about what you want.  You are a inspiration of strength that we have learned from on the forum. Please continue to give us insight for as long as you can.   Thank YOU!   tom

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Exciting (and by that I mean horrifying) discovery #1,000 since my diagnosis is that my emotions, typically the negative ones, are on steroids.  I don't think it is the disease, but rather the diagnosis that is causing it.  Something will happen that i normally would just be irritated by, and I find myself headed down a path where I can't pull out of it.  No violence.  Just dark depression.  I know rationally that i am overreacting to whatever the stimulus is, but it makes little difference.  Reminds of the comedian Ron White who (after being thrown out of a bar explained) "the cops told me I had the right to remain silent, but it turns out I didn't have the ability to..."

I am a (usually) smart, rational guy.  I know my reactions are going to cause those around me who love and care for me to pull away.  I know this.  But I can't seem to reign in the emotions.  And it scares me.  Again not because I would ever take physical action against anyone or thing, but I cannot seem to modulate the emotion.  With time, it passes, but the damage has largely been done.  

I am looking for counseling with someone with experience in PD, but also spouses for those with PD.  But I know it's not just the disease.


Bottom line:  I am a roller coaster of emotion.  Just a tinderbox ready to curl up in a ball and/or cry my way through an evening (and I never, ever cry).

Good grief this thing.....    

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I felt the same way for some time after my diagnosis (at age 46, three kids).  Meeting with a therapist helped immensely (and they don't need to specialize in PD- since a lot of what you feel is a mixture of grief reaction, anxiety, and depression).  The crying thing is familiar as well- I think it is probably related to the disease as it still pops up unexpectedly (Disney movies cause unpredictable crying jags for some reason.

My wife told me something that helped when I was at my lowest- essentially 'we can't fix what you have, we know it will get worse, and it may end up killing you, but we're not going to continue to live in a state of despair'.

That snapped me out a bit.

Again- find a therapist soon. And not as a joke, but you should lock up your guns if you have them, and have your wife hide the keys.

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Seeking a therapist is wise.  Are you taking any antidepressants/ anxiety meds?   I am  five years into my diagnosis and a couple years ago I was in a dark place.  I discussed it with my neurologist and she put me on Effexor.  It has helped me with that roller coaster of emotions.  My only complaint is that my emotions are flat now: meaning it is hard to cry now.  Sometimes the release is needed.  I would strongly encourage you to talk with your neurologist about additional meds. It may seem with our Parkinson meds we take enough of meds but it may be necessary.  Hope this helps and please know those of on this forum have most likely been where you are.   You aren't crazy.  It is just the nature of the beast.....Parkinson disease.

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Hello ALL

Been thinking about spring.  Been up since 3 am.  Been a long winter here as of yesterday we had 51 total inches of snow for the winter.  

Each day now the sun shines more melting the winter blues away.  I don't do much gardening like I use to.  But  My wife and I went to a friends home that had a neat row of flowers.   (Autumn sedum)  Spelled wrong such is life.(close anyways)  The flowers had so many different types of butterflies.  It was peaceful  just sitting there and observing them.  These flowers come back every year. I plan on finding where I can get those flowers and have a nice spot to put them.

My point is we all have the PD BLUES.  Sometimes we need to open the shades and let the sun shine in.  What good plans for spring do you have. I have Two  April 5 going to Houston to see for the first time up close our two new twin grand children. (Total  in Houston 4 grand children ages 4,2, and twins 10 months).  Also the planting of Autumn Sedum!

What are you looking forward to this spring?  I want to read what the Spring sun brings for you.  Thanks  Tom  

Edited by OMAHA TOM

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Hi Tom,

The planting of Autumn Sedum???  I'm a gardener so I know what sedum is but didn't know there was an event - please explain.  As for Spring, I'm looking forward to being warm so that my limbs feel better when I go outside to walk!  Congrats on those grand babies.  Gardener

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Gardener Spring is an event I guess.  Planting something.  My youngest daughter is studying to be a psychologist.  She told me that I am drowning myself in negativity.  Told me that it does no one any good to do that to themselves.  So I sat back and looked in the mirror.  She was correct!  So I thought lately on the forum I have been a source of negativity.  So I read your post I thought about you walking with a bright sun and birds flying. Probably could throw in a head set with your favorite music.  No negativity in your post.  Even relaxing.    Tom

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9 hours ago, OMAHA TOM said:

Gardener Spring is an event I guess.  Planting something.  My youngest daughter is studying to be a psychologist.  She told me that I am drowning myself in negativity.  Told me that it does no one any good to do that to themselves.  So I sat back and looked in the mirror.  She was correct!  So I thought lately on the forum I have been a source of negativity.  So I read your post I thought about you walking with a bright sun and birds flying. Probably could throw in a head set with your favorite music.  No negativity in your post.  Even relaxing.    Tom

Smart kiddo and attitude is half the Battle 

LAD

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Lad Are you having fun working with the hall, menu, music, flowers,dresses and more.  Exciting times for your family!  Marriage of your grown up child.

NOW THAT IS AN EVENT!  HAPPY TIMES!

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10 hours ago, OMAHA TOM said:

Lad Are you having fun working with the hall, menu, music, flowers,dresses and more.  Exciting times for your family!  Marriage of your grown up child.

NOW THAT IS AN EVENT!  HAPPY TIMES!

I’m having fun looking at dresses!

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Been on anti-depressants for about 6 weeks now.  don't really feel much, which I guess is the point. The major swings have subsided and i've settled into an acceptable rhythm.  Whatever the 5 stages of grief are, I feel certain i've lived them all several times.  Now, I've determined that this is just reality and I'm going to force this damned disease to live with me, not vice versa.  I'm back engaged professionally.  My initial reaction to hide and wallow in self-pity has passed, and I'm grateful.  There is truly strength in numbers and this forum has really helped.  

There are many challenges we will all face in life.  PD happens to be one of mine.  It's not one I wanted, but hey, it's here.  So I will live my life without taking any meds for symptoms for as long as I can.  I will continue my pre-diagnosis routines (save for the mood drugs) and just keep going.  The tremor feels like it is getting worse on my right side, but tremors i can deal with.  

 

Anyway, just wanted to update the group that I'm pulling out of the funk.  I'm certain I'll revisit the funk periodically, but I'm doing well for now.  Hope the same for everyone.   

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Kokomo it is good to hear you are back on track.   First day of Spring has come and  hope you get outside on the sunny days and enjoy.  😎

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On 3/26/2019 at 12:02 PM, Kokomo said:

.  So I will live 

I have it on really good authority that holding off on taking symptom suppressant drugs (such as Sinemet) does not reduce the term of their future effectiveness. In other words, holding off on the symptom suppressing drugs has no effect on the progression of the disease either way (i.e., fast or slow progression is independent of the currently available drugs).

OTOH, use of antidepressants coupled with unrelieved neuro- symptoms might be an opportunity for you to try CBD as a first step prior to finding out/experimenting with the available symptomatic treatments. A conversation with your MDC could move you in the direction of symptom reduction, which in turn may reduce depression. Keep trying to "still live".

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Hey gang,

Just dropping by on a Sunday morning to say I'm doing okay...

I'm going to a PD conference on April 26 at University of Maryland called "Within Our Reach."

https://www.umms.org/ummc/health-services/neurology/services/parkinsons-disease/education/patients/within-our-reach-symposium

And I'm also joining a group as part of the Moving Day DC - walk for PD on June 1.

https://movingdaywalk.org/event/moving-day-dc/

Hope everyone is doing well. I'll check back in later this summer.

-S

 

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