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Stressed Out


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#1 DanC33

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Posted 15 February 2014 - 12:21 PM

 I am having to move due to financial issues. I am now on SSDI and I do get dependent care on my kids, but it's not near enough to live on where I am currently. I did find a HUD income based apartment in another town about 90 miles from where I am now. Surprisingly it's very nice.(unfortunately they won't let my wife work because I need 24hr monitoring because of falls and seizures)

 So because of this my stress levels are off the roof! And my wife who is used to me taking care of all these types of things is pushing me to the breaking point! I don't think she understands that stress is a major problem for those with PD(it also makes my Lupus flare badly) And the brain fog/mush/memory problems are really exacerbated by this as well. I feel like my mind and body are about to completely shut down and I am going straight to the place where I can weave baskets and wear that nice dinner jacket with the buckles up the back!

 I am not sure how to make my wife understand that it's not that I don't want to handle all this, it's that I can't handle all this.

Any ideas on how to make her understand?

  


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily


#2 Luthersfaith

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Posted 15 February 2014 - 04:04 PM

Hang in there.

 

Education is the key to many things.  She will only understand after she has a knowledge base to build upon.  Will she read this blog?  


"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#3 Island Woman

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Posted 16 February 2014 - 07:30 AM

Maybe both of you sitting down with a social worker to discuss your feelings and the role your wife plays in all of this.



#4 Golden01

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Posted 16 February 2014 - 08:49 AM

PD changes roles for most all of us. Sometimes, it takes time for us to adjust to those new roles. Sometimes, there is no time for those adjustments. Financial worries and taking over things I didn't want to do (like driving on long trips and more) were hard for me. I think Island Woman's suggestion is a good one, especially if the social worker is knowledgeable about PD. 

 

Does your wife go with you to your doctor's appointments? That may be an important part about her gaining more understanding about the disease. My husband and I prepare a written list of questions before each visit to his MDS. That might be away to get information about the role of stress and PD out on the table in a way that doesn't make it harder. For me and my husband, being sure we have plenty of time when we need to discuss issues is important and we've learned the hard way. Talking about things on the run, when we need to hurry, or as I'm going out the door isn't very successful. 

 

The financial impact of PD is another of the difficult aspects of the disease that often isn't recognized or acknowledged. What you are going through is hard. Know that you have support and good wishes from this forum and from my corner. 


Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#5 DanC33

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Posted 17 February 2014 - 08:53 AM

Thanks everyone for the replies! 

Mysteriously, my former employer got wind of what was going on(not sure how) and they and a few of my friends took it upon themselves to give me the money to hire a moving service so I don't have to worry and stress about it too much! They just direct deposited the money like they would do with my paycheck! It just appeared one day in my account, then I got an email from my former HR manager explaining everything! How cool is that! Too bad they asked me not to say anything or even mention their name(otherwise I'd be shouting it from the roof tops) because it's not what they would normally do, but they said that because of what has been going on with me they wanted to help. And yes(me the tough guy) I broke down and cried for an hour! I did LOVE my job and was very good at it.

 

 So because of this my wife has started to rethink her position and the predicament we're in. If my former employer and my friends know that stress hurts me that maybe I really am in trouble(and she did read all this as well). And she agreed that as soon as we get settled into our new town we are going to start trying to find a counselor that understands the impact of permanent diseases. 

 

 I am most grateful to this forum, to read everyone else's issues and also to vent and get answers to questions! It's amazing how much better I feel sometimes just bouncing things off others who as they say "been there done that".  And Golden01 you are right, very rarely is the topic of finances discussed, When someone goes from a good job with great benefits to SSDI/SSI and Medicaid/Medicare, making 25% of what you were and having to use services like HUD/SNAP ect.. Maybe people are embarrassed?  I was big time, until my rep at SSA  reminded me that these are not "hand outs" (although there is lots of abuse) She said that my tax records go back for over 30 years and that I'm just getting back what I have paid in. And she said that people with PD, Lupus and other lifelong diseases are what these programs were made for.  


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily


#6 Beau's Mom

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Posted 17 February 2014 - 12:56 PM

Dan,

 

Sounds to me like a lot of people care about you very much! I, too, have worked all my life and paid taxes and do not feel the least bit guilty or less-than for using Medicaid and SNAP. When politicians or even people who know me try to paint me with the "guilty of scamming the government paintbrush" I ignore them. In the case of my brother-in-law, I tell him outright not to put me in his "guilty" group because I did not ask for PD and would much rather be healthy and working at a job I loved.

 

Dianne


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I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#7 Island Woman

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Posted 17 February 2014 - 02:32 PM

Dan, it looks like when you thought one door was closed for you, your employer opened another...I'm sure you did some good things for them and now pay back time.

 

By all means hook up with a counselor/social worker when you get settled...the right one will have a wealth of knowledge as to how to handle things and what help is out there plus some health ins. covers it.  Some times a good neuroligist will know of a contact person to talk to.  The first one I was meeting with was not a match for me, so one day I asked my doctor nurse....oh you should go see___,  she was a perfect match for me....been with her for 3 yrs.

 

Also stay with this forum....ask your questions....vent if you need to...always someone to help/listen.

 

Patricia



#8 DanC33

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Posted 17 February 2014 - 02:35 PM

None of us asked for any of this! So it really irks me when people "look down' on me because of the help I need. But I do understand their position when you see someone in the store buying cupcakes and soda with 4 kids living on every social program out there.  


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily


#9 johnnys

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Posted 17 February 2014 - 09:33 PM

Danc33 you didnt say if you were a veteran.There is alot of help out there if you served.let me know I could help you

.

Also as far as stress goes i have found my Recovery Inc.method invaluable and free.All I have to do now is keep up my reading and practicing and stress is short lived.

 

PD is hard cause it tends to play mind tricks some times.When i get obsessed over something I realize it is just a nervous symptom,unwanted and unimportnat. Distressing but not dangerous..It always goes way.Then im back to my normal stream of thought.Hmm what can i do tomorrow to have fun.

Always here to help.



#10 DanC33

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Posted 18 February 2014 - 06:30 AM

Johnny, No I am not a Vet although I did serve in the Marines briefly. I was misdiagnosed by a Navy Doc as having osteomyelitis so they did an administrative separation. I was only in for 14 weeks. I got home to my family doctor and he had a good laugh and said it was a gout issue.

 

 I too obsess over things and it drives me crazy! So what is this Recovery method? I will check into that!

 

 Island Woman, I will make it a point to find the right counselor. My cousin had to run through  3 or 4 before she found one that worked.

 

 And sorry everyone I am out of likes!


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily


#11 Golden01

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Posted 18 February 2014 - 07:46 AM

DanC33 - There are good people in the world. I think sometimes, we just don't know where they are or where they will come from when we are in a difficult spot. They do come. Your former employer clearly has some of those good people in the world and they can change our lives as well as give us hope. 


Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#12 johnnys

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Posted 19 February 2014 - 09:59 PM

Johnny, No I am not a Vet although I did serve in the Marines briefly. I was misdiagnosed by a Navy Doc as having osteomyelitis so they did an administrative separation. I was only in for 14 weeks. I got home to my family doctor and he had a good laugh and said it was a gout issue.

 

 I too obsess over things and it drives me crazy! So what is this Recovery method? I will check into that!

 

 Island Woman, I will make it a point to find the right counselor. My cousin had to run through  3 or 4 before she found one that worked.

 

 And sorry everyone I am out of likes!

Anyone interested in Recovery inc.can find it at www.lowselfhelpsystems.org    I have beeen a group leader since 1994.

 

I would contact a veteran service agency and ask them if you qualify for any benefits.I couldnt seem to find much about medical discharge.


Edited by johnnys, 19 February 2014 - 10:17 PM.


#13 DanC33

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Posted 21 February 2014 - 09:47 AM

Johnny,If they do an administrative separation it's like you were never there. So no help no benefits nothing even though they are the ones that messed up not me.


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily


#14 lethe

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Posted 22 February 2014 - 06:52 PM

Item #: 3945180 dalai-lama.jpg



#15 lethe

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Posted 22 February 2014 - 06:58 PM

desiderata - by max ehrmann

 

go placidly amid the noise and haste, and remember what peace there may be in silence.

 

As far as possible, without surrender, be on good terms with all persons.

 

Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story.

 

Avoid loud and aggressive persons, they are vexations to the spirit.

 

If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself.

 

Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

 

Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.

 

Be yourself. Especially, do not feign affection. Neither be cynical about love, for in the face of all aridity and disenchantment it is perennial as the grass.

 

Take kindly to the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness.

 

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

 

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.

 

With all its sham, drudgery and broken dreams, it is still a beautiful world.

 

Be cheerful. Strive to be happy.

 

Max Ehrmann c.1920


Edited by lethe, 22 February 2014 - 06:59 PM.


#16 DanC33

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Posted 27 February 2014 - 07:33 AM

We finally got the move done, it was hard but it's over. Now it's the unpacking, not my idea of a good time. Still stressed but pushing on, tremors and all.

Lethe the poster on living one day at a time is very true.


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily





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