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Concernedcg

Spouse newly diagnosed-denial and anger

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Greetings all... I'm thankful for this forum. First time here and feeling very overwhelmed. My spouse, 57, was recently diagnosed and is in denial and expressing a lot of anger. I'm trying to be as cheerful upbeat and supportive at the same time feeling very angry myself. Almost feel as though our future is being robbed away from us. I'm feeling a lot of different emotions thoughts and feelings and not quite sure where to turn as he wants no one to know about this yet. My upmost concern is for him of course but how do I prepare to be the best caregiver that I'm going to need to be?

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Welcome ConcernedCG,

 

You have found a great resource here.  No one here knows your husband's degree of disability, but if he has been diagnosed early stage than you have many good years ahead.  I, too, thought my life was over when dx at age 55 but with medication and exercise, I feel better today than I did before my first appt. with a Movement Disorder Specialist.  What helped me the most is that my husband does not treat me any differently.  He is not my caregiver - not yet anyway.  My primary goal is to make sure that the caregiver role for him is as far in the future as possible.  As for telling others I would suggest that you let him be the one to do this when he is ready.  There really isn't any reason to tell anyone unless his symptoms are so obvious as to make family and friends worried.    Best wishes and keep us posted.  Gardener

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Thank you Gardener for your encouraging words. I am a planner by nature and all of this leaves me at a loss and feeling out of sorts as to what to do, or not do for that matter. I guess the best thing I can do for now is just take it one day at a time.

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Thank you Gardener for your encouraging words. I am a planner by nature and all of this leaves me at a loss and feeling out of sorts as to what to do, or not do for that matter. I guess the best thing I can do for now is just take it one day at a time.

Easier said than done I'm sure.  We are all creatures of habit to a certain degree.  Go with the flow and hopefully you will adapt to what is coming your way. 

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Welcome,

You're not alone.  We're glad you found us.  Your DH has every right to be angry, upset, and in denial.  He has had a hard blow.

 

OKay, let's also acknowledge so have you.  It's hard.  Particularly at the beginning.  We want to help so much, and there is nothing we can really do but 'be there' for the loved person.  So be there, but remember that you too have had a shock, have a human right to be angry at the fates and scared, so be kind to yourself also.  Other than that, it's still the same world it was last month, life goes on, and the sun still rises.  Try to remember that nothing has really changed since his dx, and hopefully no changes will come for a long time. 

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Hi Concernedcg,

 

As others have said - welcome.  I too am the "cg" in our partnership.  DH (dear husband) was diagnosed in July and this was confirmed by DatScan in early Oct.  He too is 57.   We're scheduled to see a Movement Disorders Specialist in February (their waiting lists are very long).

 

We both felt overwhelmed and "unfairly treated" by nature at first and we still go there sometimes until we remember that it's not the "hand you're dealt, but the way you play it" that counts.

 

Make sure you take care of yourself too.  Remember the airline attendants' words - "Put the oxygen mask over your own nose and mouth before helping the person next to you".  I don't mean this in a negative or selfish way, but if you don't take care of yourself you'll be no good to anyone else and remember, your DH isn't helpless.  Sharing my worries and needs with mine gives him reassurance that I will always need him and that we will walk this journey hand-in-hand.

 

This is a great group of caring, knowledgable, experienced people.  Keep reading and sharing whenever you need/want to.  Maybe one of the "silver linings" with PD is it forcing us to "slow down" and appreciate the little things in life we used to "rush by".

 

All the best.

 

Lonnise

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Just turned 58.  I was officially Dx at 55, but had been showing signs of PD for years.

 

For about half of PwP they also have depression. Some it is just Apathy, but both are real and depression can be treated. I was on Paxil in my 30's due to depression. It took a few years, but was worth it.

 

Best thing for Parkinson's is exercise. I love Rock Steady Boxing.  Our afternoon class is mainly "Still working, fighting PD when I can". Everyone seems to be mid 50's.  Morning class is more like an average of mid 70's. So you can imagine someone walking, at 35, and looking around a group in their 70's thinking "not for me".  Catch is the boxing helps, also good to meet other people and share stories (who is the best surgeon, what do you like about your MDS?, etc).   

 

For me the worst moment was realizing I was no longer in control of my bladder. I never thought it was PD related, but my stomach and colon would stop for no real reason. Took a while to accept what was going on. Irony is sinemet helped (I didn't expect that).  My "frozen shoulder" was also PD related, Ortho said I'd never get full range of motion until I had surgery. Never had surgery, and now can swing it a full circle.  So having a Dx is good to go out and see things.

 

HUGE ITEM: Before Dx, even if you suspect PD... Life Insurance, Long Term Care are cheap to buy, until you have a Dx of PD.

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Remember that PD represents a loss, people need to go through the stages of grief before they can reach acceptance. At that point you don't want complaciency but you then can begin to take control and do what you can to hold off progression (i.e. exercise). 

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Fate has a way of giving us what we need. Shortly before I was diagnosed, I read something about the stages of grief that Id never heard or seen before. It was that the 5 stages were only originally intended to apply to the patient.

 

As the patient myself, I can add that I think our CG's experience most of what we go through, but couldnt possibly have the same perspective.

 

I for one feel like Ive been pushed at certain points to "just get over it", as if I just hadn't been told the underlying cause of my death. To say that there is no schedule for coming to grips with that realization is an understatement. The important part is to just keep talking, even if it's taking two steps back.

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Welcome,

You're not alone.  We're glad you found us.  Your DH has every right to be angry, upset, and in denial.  He has had a hard blow.

 

OKay, let's also acknowledge so have you.  It's hard.  Particularly at the beginning.  We want to help so much, and there is nothing we can really do but 'be there' for the loved person.  So be there, but remember that you too have had a shock, have a human right to be angry at the fates and scared, so be kind to yourself also.  Other than that, it's still the same world it was last month, life goes on, and the sun still rises.  Try to remember that nothing has really changed since his dx, and hopefully no changes will come for a long time. 

 

Its very concerning and shocking at first diagnosis. Yes life goes on and you both adapt. The sun does shine again.

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Of course, you're feeling overwhelmed! Who wouldn't be? It's devastating. It's ok to get angry, just don't stay angry. Energy & time are too precious to waste on it. Your future hasn't been taken, only rewritten. Nobody plans on being a caregiver.

 

You're on the right track coming here. Keep searching for information & support. Be open-minded when it comes to various treatments. Exercise is crucial; I love Rock Steady Boxing. It's great for both exercise & networking.

 

If, when, who, & how to tell can wait until you're both ready. You'll be more prepared to deal with people's reactions & questions.

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Thank you all for your kind words, support, insight and wisdom. Keeping things hush hush over the Holiday with family and friends around proved to be quite difficult as symptoms are getting more obvious. It was pretty exhausting trying to deflect questions or concern and changing the subject. Christmas may serve to be more challenging as more family will be around. I'm still not discussing this with anyone except my husband and a Christian counselor that I've been seeing for a few years. She is very helpful. It helps a great deal just to be able to talk and this forum is very encouraging as well. So thank you all again.

I pray each of you had a blessed Thanksgiving and upcoming Christmas plans are filled with love and joy. Will check back soon. Much love...

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I recommend being upfront with family and friends about it. Work etc. is a different ball game altogether. I can't imagine having to hide something as big as this from my family. Although my family has delt with multiple cancers etc. we've never hidden things. Support is crucial to getting through the hard times. If my family wasn't supportive I'd tell them to f*** off and get along with my life. Sorry if I'm being too harsh, but we've been through some serious s*** together and I can't comprehend that.

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Things are going better... Have told some family and friends and they're all very supportive. His work also knows so there's concern as far as what the future holds for us in that area.

Lately seems that I have to be the realistic one as the meds are helping him so much at times he goes back into denial. It's tough... But we're dealing with this.

I have no ties to the product at all but have seen on this forum that Ashwaghandha (sp?) is extremely beneficial and he's started taking it... The difference is like night and day as far as his mood and level of happiness. Of course this could also be the product of the sinemet and mirapex but I do think there's something to this supplement.

Anyway, it's been a little while since I've posted as it's taken some time to digest all of this. Some days are better than others. I am in a depressive state and having to take meds for that but I guess that's pretty realistic for the shock we've had with this...

Many Blessings to all of you and hope you're doing well. One thing I'm learning is that I HAVE to take care of myself in order to be healthy for him. That's a new concept for me so it's taking some effort/change on my part to do so.

I just have to remember, this is a marathon-not a sprint.

Best regards to all

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Glad to hear you've reached out to some supportive family and friends and are remembering to take care of yourself.  That is very, very important.  Wishing you more good days.

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An update: thank you all for your support and kind words. This forum helps.

Drs have been very reassuring that we caught this early on and his work has been supportive so for the short term we're doing well. Husband is doing and feeling well. I'm a planner by nature though so not being able to plan where or when our retirement will be is frustrating to me.

I'm writing today because this thing struck me right in the face. I was happily getting my Valentines gifts ready for our daughter and my husband... I put the ribbon on the top of my daughters gift bag and curled it making it really cute and fun. I went to assemble my husbands gift bag as well hoping that he would like the gifts inside the bag. I went to tie the top of the bag with the ribbon the same way I had made my daughters and I had to stop and hold back the tears as it struck me like a ton of bricks that he would have a very difficult time undoing the ribbon to open the gift. I quickly tried to hold back the tears but they're still coming even now as this is blurry as I type. I guess I should expect there to be highs and lows but I don't know why this particular task hit me so hard.

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Concerneddog

 

I am very sorry you are experiencing such challenges...and "triggers" surround you. You can keep your smiling face on most of the time...but every once in awhile....the facade melts and your true fear and sense of loss reappears. You are not alone.

 

Most of us have felt the same emotions. PD (parkinson disease) is noted by one of our wisest forum members when she says, "PD is a long grieving process." It is so true. As you have heard, most PWP (people with PD) go thru the same stages as grievers...denial, anger, sadness, sometimes quilt, and then acceptance. It takes time...you and DH are experiencing a loss...a loss of future expectation...a loss of stability...and huge unknowns ahead.

 

However, CD, you will soon learn that PD advances in steps....sometimes short steps...sometimes long steps...but incrementally...Your life will not change dramatically from day to day. We do not look further down the road than we can clearly see. We learn to manage what we know...and await what we dont know until we must adapt...again.... tomorrow will not be much different than today...UNLESS..you spend your valuable time and energy on "what if's" and google search all PD possibilites that may never occur for you.

 

Maximize every moment....make a "special gift" for DH (dear husband) every week....you are a planner...start planning your next vacation....take extra time to provide service to someone outside your family....include your husband in the project...when he and you are helping others, PD symptoms seem to disappear..

 

Adapt to your situation...you have read the benefits of exercise...make a plan...begin and share an exercise daily with DH...a walk around the neighborhood...start a swimming program together...an exercise class....exercise is the absolute BEST thing you can do for him.....start thinking every day what you CAN do...not what you or he can't do...and maxi ize that as much as you can.

 

PD can be a companion...accept it...work with it...not against it...and you will learn from PD...it will teach you patience, endurance, empathy, ...and,you will discover strengths you never knew....

 

I have bn diagnosed for nearly 4 years and my Dh was dx'd with PD a year ago. Our love and commitment is stronger than ever...after 47 years and five children...Yes we plan for the future...but we DEFINITELY live for today. Having a strong faith helps us realize that this earthly time is just a mere spect of time when viewed by the eyes of one who believes,in eternity. We just try every day to be the best we can be.

 

Every morning we give thanks to our creator for our good health...regardless of the status. Good health because we are so much better than many others who must endure. Good health because we are independent. Good health cuz we can help others..you see, CD, as long as we are grateful...as long as we recognize our purpose...in that we can benefit others...THEN we receive strength to adapt to whatever PD brings us.

 

The posters who have been here...the care givers especially...are remarkable mentors...listen carefully to them...they are generous with their time...they want to help you ...and soon you will find yourself helping others. What a very sad world we would have without challenges....we would have no empathy or desire to assist others.

 

So you see, CD, if you make PD a companion...not an enemy you fight every dsy...but a gift for you to learn from...to build your own talents from...adapting and acceptance comes easier.

 

Nothing in this world is easy...we all stumbled while trying to walk when infants...we still stumble everyday...but, hopefully, we continue to take the steps...we still keep trying...and most of us can make it to journey's end ....regardless of the steepest inclines.

 

My prayers are with you. Be kind to yourself...allow yourself to feel the "grief process"....strength will come as you grow...and "walk"....

 

Best wishes...continue to engage in the forum...we need you.

 

Best wishes,

 

NN

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NN, In a bit of a hurry right now but just wanted to say a quick very sincere thank you for your input and words of encouragement. It means a lot.

God bless and prayers for a wonderful day!

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Hey there,

Just breathe, lean into the "discomfort" and you'll realize it won't absorb you.  I promise it won't.  You'll be surprised at what triggers your different awareness that you never thought of before.  It's fine to cry, that's one of Nature's ways of helping us clear toxins from our bodies.

You'll learn to "make peace" (in part) with not being able to plan out as much as you thought you could.  Reminds all of us to enjoy each day for the things in it that we don't control.

Take care and keep moving forward.  Understanding "why" you feel a certain way isn't as important as maybe you thought it was.  Just feel it and then decide (if that makes any sense at all).

You're doing great.  Keep it up.

LHG

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One good thing with PD ,we forget random experiences.Maybe cause there is so much good life ahead,lol

Morning levodopa and coffee

lol

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