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#141 VOW

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Posted 25 July 2015 - 09:42 PM

*shaking head*

 

Thanks!  I needed that!

 

Seriously, I need to stop bitchin' and moanin' in my head, keep putting one foot in front of the other, and move forward.  And maybe make a mental note to talk to my PCP about adjusting my antidepressant.  I have a lot of stuff I WANT to do...but I can't seem to get started.

 

~VOW


Married 41 yrs to spouse with PD
who also has Seizure Disorder

 


#142 miracleseeker

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Posted 26 July 2015 - 08:13 AM

For me I find that when I put my mom's needs first before mine is when I stop the "boo hoo me"  feelings.    There are a lot of things I wish I had done or is doing now but life is life.  I'm sure even Oprah has regrets about things she can't accomplish.   :razz:  

 

I was on anti depressants before and all it did for me was make me super hungry and I gained 15 pounds.   If I want to be happy I have to make it happen. It's an ongoing process and I just take it one day at a time.


Edited by miracleseeker, 26 July 2015 - 08:49 AM.


#143 Quietstill

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Posted 26 July 2015 - 09:16 AM

Hi Vow,

Careful with the head slaps, reality is hard enough.  I miss the companionship, I miss looking forward because everything is on hold.  If many years of marriage slowing disappearing and flowing out like the tide doesn't make you want to be sad and run away occasionally then it wouldn't have been a very good marriage.

 

So, remember to be sad occasionally, to mourn the lost future, to acknowledge that it's just damn hard every so often.  That's only human.  And remember to take deep breaths, and find joy where you can.



#144 New normal

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Posted 26 July 2015 - 10:49 AM

Vow

Welcome to,the forum...and know,that all,you say is true....and others have felt the same...and you deserve the moments of,grief for,the loss that was...and the situation that is now....I have PD...but I often view this site to remind me of,the challenges of the CG's (caregivers).

You are not having a pity party...you are simply adjusting and transitioning to the next phase....and as the phases become harder, please continue to,post...yes...there are others who may have it worse....there are always starving people with no shoes SOMEWHERE in the universe...but your challenges are real to you...and how you handle them can be simplified by contacting the great CG's on this site.


Good luck to,you...stay strong...and stay connected to the wise people on this forum....you are not alone...and you are entitled to your feelings...without shame...without guilt...they are real ....God Bles.
Dx'd 6/13 @ 66 by MDS in office with sub linquil L dopa challenge. Carbidopa/l dopa 50/200 5x in 24 hr span.
Reaction to Amantadine 100 mg 2x per day,Discontinued, 4/15.
Normal DaT scan '13, normal MRI, '13 Second DaT scan, 10/14, normal.
Symptoms: 90% controlled: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy, full body dystonia seizures approx one per day, dysfunctional autonomic systems
Cherish your loved ones, make memories with them..........now.

#145 VOW

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Posted 26 July 2015 - 10:53 AM

It's hard to give a capsulized version of our entire relationship, or describe what it has evolved through to become what it is today.

 

I think what I am mourning the most is what DH's limitations do to MY world, specifically.  Let me explain: I am profoundly hearing impaired.  I'm completely deaf in one ear, and even with amplification, I have maybe only 40% hearing in my other ear.  This makes my world very, very small.  I cannot use the telephone AT ALL.  I don't like to go anywhere by myself, because people simply do not have the patience to deal with someone who is hearing-impaired.  I get ignored, or worse yet, treated like I'm an idiot.  With DH at my side, he can jump into conversations on my behalf, and he can "translate" what other people say that I cannot understand.

 

I don't drive any more.  I have recurrent vertigo (NASTY business!) and coupled with my hearing-impairment, I REALLY don't want to deal with law enforcement should I violate traffic laws!  So DH is the family chauffeur.

 

But I wonder: what happens when DH can't drive any longer?  When he cannot make all our phone calls?

 

I do depend a great deal on him.  As he does with me.

 

A regular kick in the head makes me STOP with the crippling "what ifs" and forces me to see what all I do have right now, and to appreciate just that.

 

 

~VOW


Married 41 yrs to spouse with PD
who also has Seizure Disorder

 


#146 miracleseeker

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Posted 26 July 2015 - 11:07 AM

You would be surprised how much you can do on your own when push comes to shove.  We all appreciate enablers cause they do things for us that makes our lives easier even though they are preventing us from having a thick skin and the "just do it" mentality   When my brother lived at home he did everything and my mom and I were spoiled.   I was so angry when he moved far away because that meant the burden was placed on me now but I'm still alive and I amaze myself all the time with what I can accomplish.

 

Here are a few related questions -  what do I do when I'm losing my crutch?  Is co-dependency a good thing?


Edited by miracleseeker, 26 July 2015 - 11:08 AM.


#147 kaihoukan

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Posted 19 August 2015 - 01:15 AM

Hi, Whatnext, I think that it is natural that we fall prey to despair in such dreadful circumstances - so I think it is good to remember that there are ways to ameliorate this awful disease.

 

There are, apparently, a number of people who are now symptom-free. (Please note that this does not necessarily mean that they no longer have Parkinson's, but means that they

 

no longer suffer from it.)

 

Howard Shifke seems to be one such person. He has seemingly conquered his symptoms by daily practice of Qi Gong. Also, I think it interesting to see that PEMF (Pulsed

 

ElectroMagnetic Fileds) is becoming more widely used.

 

In short, there are many ways to positively affect people suffering from Parkinson's.

 

Btw, that doctor sounds like a real piece of work. I feel sorry that you had to endure that.

 

 

 

This is a general question to you all: Is it ok if I post my URL here?

 

I don't want to seem like some nasty spammer :(

 

My best friend has Parkinson's, I have done a lot of research for her, and now I want to see

 

if I can help others with some thoughts, ideas, and encouragement.

 

It's a non-profit, non-advertising page, its only purpose is to help people with Parkinson's, their carers, and their loved ones.

 

 

 

Whatnext, if it is possible to get counseling, then please proceed with that. I'm guessing most of us could do with some

 

counselling regarding this awful ailment, I know I certainly could!

 

 

It seems to me that Tai-Chi, Qi Gong, or yoga  would massively help most people,  but Tai-Chi or Qi Gong might be easier to do than yoga.

 

Some people swear by supplements, eg, Tibetan healing supplements, or just plain ol' multivitamins.

 

My guess is that B12, Magnesium, Selenium, and a whole bunch of other things may help.

 

Others might say that adhering carefully to a properly managed macrobiotic diet will eventually make one symptom- free.

 

(Macrobiotic diet is a tough one, though! No sugar, no coffee, no milk, no chemicalised food, etc.)

 

To make a long post a little shorter, research the web as much as you can, there are many ways to approach this disease.

 

And please remember that you are not alone - this forum is a wonderful thing for all of us to share and benefit from.

 

So, please try to keep your spirits up, Whatnext.

 

I wish you and your husband the very, very best of luck.


Edited by kaihoukan, 19 August 2015 - 02:44 PM.


#148 kaihoukan

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Posted 19 August 2015 - 08:44 AM

You would be surprised how much you can do on your own when push comes to shove.  We all appreciate enablers cause they do things for us that makes our lives easier even though they are preventing us from having a thick skin and the "just do it" mentality   When my brother lived at home he did everything and my mom and I were spoiled.   I was so angry when he moved far away because that meant the burden was placed on me now but I'm still alive and I amaze myself all the time with what I can accomplish.

 

Here are a few related questions -  what do I do when I'm losing my crutch?  Is co-dependency a good thing?

Miracleseeker, I think that co-dependency is what the human race is all about. We should all do the best we can to always help each other. Co-dependency is a bit like symbiosis, it's normal enough.

Good luck with everything, and I hope you always accomplish whatever is needed.


Edited by kaihoukan, 19 August 2015 - 08:47 AM.


#149 miracleseeker

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Posted 19 August 2015 - 11:20 AM

Helping others is a good thing.  Depending on someone with the expectation that they will be there for you is unrealistic and putting pressure on the person you seek help.  You can do all you want for someone but getting something back in return should not be a requirement from the receiver.   Partnership is great but be prepared to do things alone when the time comes.  We should all be self-sufficient as much as possible.  I only speak of people who do not have physical limitations that would prevent them from doing so.   My aunt will not do a thing without her husband.  I don't think that is a good thing.  That is my example of why we all should be able to stand tall and handle things alone  without having the fear of doing it alone.


Edited by miracleseeker, 19 August 2015 - 12:11 PM.


#150 kaihoukan

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Posted 19 August 2015 - 02:42 PM

I think I probably misunderstood your post, Miracleseeker, sorry.

 

You are, of course, completely correct - we should neither expect, nor want, anything in return.

 

It's often the way, though, that people co-depend.

 

Thanks for the interesting food for thought, and sorry for misinterpreting your post.



#151 drwatt21

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Posted 02 September 2015 - 09:17 AM

Hello, I am a caregiver for my 70 year old father who has been diagnosed with PD for 20 years.  I think we are approaching the late stage of the disease.   Currently struggling with personality changes (which I attribute to the agonist - he takes Mirapex) and struggling to get him the care he needs.  We had him in an assisted living facility and he took it upon himself to move himself out into an apartment and hired a random person to work and live with him (she's a 20 year old student and she's NEVER there).    I look forward to searching the forums for information.  






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