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Elizabeth Cleary Krumnow

This is so hard. Just needing support

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I'm going to be uncharacteristically vague for once, and not list all the details and medicines and all the treatments and the side effects and all the problems and possible solutions. I'm going to skip all that because I know I'm in a place where you understand. I don't need to tell you the details. You all know what it's like to watch your loved one's spirit fade away and to stand there watching them suffer, wanting to help but unable to take their pain away. You know what it's like to give everything you have and realize the crushing reality of it not being enough to fix this. You know what it's like to always have another plan or strategy to fix things and to watch it go up in flames. I'm not saying it won't get better again, because it does, but right now I'm not in the mood. Maybe in a few minutes I will be, but right now I am angry. I am heartbroken. I am so tired. I hate this disease.

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Hi Elizabeth

 

PD sucks doesn't it!  I have been fighting PD in the caregiver role for more years than I care to remember.  There are those days you don't think your heart can't handle one more day, so you run and try to hide from it just for a little while to pretend it isn't happening, and find you can't run from it.  Nothing we can do, or say will fix anything, other than to keep them as healthy as possible. 

 

I can tell you that it doesn't really ever get easier, but you learn when to take a break however you can, and it may only be for short periods each day.  You can and will learn from this just how strong you can be, like it or not.  There will always be days that you are angry, and that's okay.  There will always be days you are tired, and that's okay.  One thing Elizabeth,  you can't take their pain and anguish away, and as much as we all wish we could, and would do it in a heartbeat it creates more anguish for them to know that.  Stress for a pwp is their worst enemy.

 

My advice:  Get as much help as you can, take small breaks every day and do what you love.  Realize that you can only do as much as you can do each day and that is okay, none of us are super heroes.  Realize there will always be good days, and there will always be those bad days, and that will never change, so cherish the good days!  Reach out, come here to the forum and rant about it, you will feel better than keeping it locked inside. There are caregivers here you won't walk in front of you or behind you, we will walk beside you on this journey.

 

Tomorrow will be a better day, and all the best to you, you are stronger than you realize!

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Hi Elizabeth,

 

We completely understand.  We hear your heart, and what flows from it resonates with each one of us on this forum in some way.  Know that you are not alone...  You've already received good advice here...hold close to your family, friends, and faith.  I have found that, even on my worst "PD days", the frustration and despair always give way to a new day that is brighter, more positive, and hopeful.  Sometimes we are a strong support for others, sometimes we just need to lean...what gets us all through this is knowing where we stand at each moment and responding accordingly.  There is always an overwhelming flow of support and understanding here...use it as you need.  Hopefully it will provide you with the strength and encouragement to get through the periodic "valleys" in this journey known as PD!  Keep pressing on...keep fighting...the darkness will give way to light!

 

Hugs and blessings,

Mihai (Michael) 

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Hi Elizabeth

 

Jimimy Crickets but I wish I had an answer that would make it all go away.  The waking up at 3:30 am to crawl out of bed to weep elsewhere.  The 'grey' vistas, the what if...

 

But it is what it is.  Caregivers do understand.  Some days are good, some days are poignant, some heartbreakingly cruel.  I hope just knowing that there are people out there who care and understand eases you a bit.  As for wisdom?  Well, this too shall pass, and the next day may be a little brighter than the bad ones.  The hardest thing is not to feel bad about yourself for getting tired, and still having to present a positive front because stress is so bad for PwP.  So find some snarky friends and have some inappropriate laughs!  And come back and vent, and know you are not alone.

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Elizabeth, add me to the list of friends who are willing to listen and really understand what you are going through. Some days I sit in the bathroom (the one place I can hide out) and sob until I can't breathe! Then I take a deep breath and go back to my life. My hubby still won't accept the PD diagnoses, so I have to dance around all of that too. He has all the problems, but also a big dose of denial. I can't cry to my outside friends, but before this forum I felt totally alone. I'm still scared, tired and overwhelmed, but at least I have this inner circle of support. Stay with us! We need you as much as you need us!

 

Hang in there, lady.

 

Linda

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Elizabeth,

 

All caregivers get it, you are far from alone in that. I was talking to someone about this since his wife has a neurological disease. So similar in feelings and dealing with it.

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Hello all,

 

As most of you probably figured out, I am not a caregiver.  I have PD.  Let me just say a great big "thank you" to all that each of you do to provide care for those you love.  I don't know what I would do without my wife.  She is devoted and caring...I couldn't ask for more. 

There are days I want to talk about it, days I don't, days that I can laugh about it, and days that I just need a good cry.  You each endure a great deal as you stand by our side and encourage us.  Don't ever minimize your role.  Don't ever give up...  I know discouragements come, but we need you and we appreciate you.  Keep giving care...you are each awesome in your own way!

 

Blessings on each of you,

 

Mihai (on behalf of all the PDers out there)
  

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Mihai

 

Thank you, it means a lot to all of us caregivers to be noticed and appreciated.

 

Stay strong, fight the fight, and blessings to you and yours!

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I am a new member. My PWP was diagnosed earlier this month. He is retired from his career as an RN and was certain symptoms he was having we're Parkinson's. However, we hoped it wouldn't be so.

 

Looking at this site and reading caregiver's comments, thoughts, support, etc. Has been helpful. I feel very alone in this, afraid, and angry. the comments supporting Elizabeth spoke to me too and I think I'm ready to go for a long walk on a sunny, 35 degree day. I can cry as much as I need while walking with sunglasses on. Not many people home in the neighborhood on a weekday anyway. I find crying and pushing myself to take the route with some hills clears the mind and Provides a good load of endorphins!

 

I am so very grateful to find this group! We have been together for 40+ years. He is a war veteran with chronic PTSD, head injury, on and on. There is a long story in there but now is not the time. Support groups for spouses of vets don't exist where we live, with the exception of a few special folks both of our families chose to label him as crazy, and socializing is difficult for him. My closest friend is suffering memory loss which is a major loss to me. as someone said...It is what it is!

 

I must get outside for that walk. thank you!

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Hi Rosalee,

We all know how you feel.  Too cold up here to walk today, brrr. 4 degrees for the high.  But not too cold to send you a warm welcome, you know where to find us...

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Welcome to our little corner Rosalee, you are among friends here, so come often, or as often as you need to.  We understand labels, families, and many of us are on this journey alone with our pwp's for that very reason, we choose to avoid negativity when ever possible! 

 

Look forward to hearing from you again, and you too Elizabeth.

 

Stay strong, we do understand.

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What a beautiful show of support! I promise to stick around. Thanks to all of you. Things are still very difficult right now and my husband only gets worse if I'm turning into a ball of stress. It's nice to know you are all here while I go through this.

 

Rosalee, my husband is also an RN and I am as well. It can be even scarier to get a PD diagnosis when you know exactly what it looks like further down the road. As everyone else has already said there are good days and bad days, and each person has a different progression, but you will do fine. Just keep reaching out. I promise to do the same.

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What a beautiful show of support! I promise to stick around. Thanks to all of you. Things are still very difficult right now and my husband only gets worse if I'm turning into a ball of stress. It's nice to know you are all here while I go through this.

 

Rosalee, my husband is also an RN and I am as well. It can be even scarier to get a PD diagnosis when you know exactly what it looks like further down the road. As everyone else has already said there are good days and bad days, and each person has a different progression, but you will do fine. Just keep reaching out. I promise to do the same.

HI elizebeth

Fear of PD or any illness is far worse than the disease

.PD can be very unpredictable. Yesterday I went hunting with my sons and it was hard.I came back and was exhauted and said never again. This morning I woke after a good night sleep on my sofa.I felt great and ready for another day.

One bad day is not a sign of hopelessness. Many people with PD have gone in and out of even hospice.I met a man who was a freind of my fathers who also had PD. hes 94 and still happy.

Exercise is the best  remedy I think besides some safe meds.

Many more people suffer from nervous symptoms than PD.A cure for that was found in 1937 but even today many people reject it

I am pretty much free from nervous symptoms now even with PD

If your looking for stress relief ,there is no better than Dr. Abraham Low method(since 1937).

My hope is that the foundation will indorse Dr. Lows method to help our special family.

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What a warm and understanding group! Having a place to share, receive support, and return the same is a huge gift. My husband is a combat veteran with severe/chronic PTSD. He has a local support group that is very important to him. There are no groups for spouses, very little family or friend support (they don't understand PTSD...some don't want to preferring the out of date crazy Vietnam veteran status instead). My closest friend is having health issues and is basically unavailable. The thought of facing a health issue like PD in the same way (alone) undid me. I knew there had to be something and someone out there. I am very fortunate and grateful to have this connection.

 

We went to the beach over New Year's to get away from the mass of illegal fireworks that goes on for hours. The weather was true to the forecast so we enjoyed two warm sunny days walking about with his service dog who makes life better! Being away from home and the great weather brought much needed relaxation, discussion, kindness to each other and tears. It is a short drive to the beach (Oregon) making day trips a easy which is something I am grateful for.

 

Elizabeth, You are so right about folks in the medical profession. Having first hand knowledge from working with PD patients made facing this very difficult for husband. I know it haunts him. On the other hand, being knowledgeable about treatments available is a great advantage. Guess it works both ways!

 

Later!

 

 

 

Can do to make each day more positive

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I'm going to be uncharacteristically vague for once, and not list all the details and medicines and all the treatments and the side effects and all the problems and possible solutions. I'm going to skip all that because I know I'm in a place where you understand. I don't need to tell you the details. You all know what it's like to watch your loved one's spirit fade away and to stand there watching them suffer, wanting to help but unable to take their pain away. You know what it's like to give everything you have and realize the crushing reality of it not being enough to fix this. You know what it's like to always have another plan or strategy to fix things and to watch it go up in flames. I'm not saying it won't get better again, because it does, but right now I'm not in the mood. Maybe in a few minutes I will be, but right now I am angry. I am heartbroken. I am so tired. I hate this disease.

Hi Elizabeth,

You look young. Does this mean that your husband has young onset PD?  Whew!  On the other hand there are breakthroughs all the time of new treatments and new meds and perhaps soon a cure!!!!!!!

My husband is 78 and he told me today that he is glad that he is this age because he does get tired of coping every day with PD. I finally had to realize that this is our reality and we can try to do our best each day. We can fix some things. We can make our environment peaceful and serene. I have two indoor fountains, lots of plants, i let in the sunshine when there is sun, i cook great healthy food and i let him do everything that he can even though it takes him a long time to do it.

Wishing you love and hugs in your endeavors to cope.

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This is my first time to post here, but have appreciated the posts of helpful advice and support. Eighteen years ago my husband who had been experiencing troubling symptoms for a couple of years decided it was time to see a doctor. A co-worker had just told him that he noticed his arm didn't swing when he walked. That was the turning point for him to seek a diagnosis. Three months later, the diagnosis of Parkinson's was final. From then on I have been constantly vigilant as a caregiver to help him with treatment and adjustments, etc. It has been a long journey. Medication helped him function quite well for about nine years. The next nine years we have been problem solving every time something new crops up. We have worked as a team dealing with his depression, orthostatic hypotension, freezing, medication changes, experiments, etc. He has participated in three clinical trials, hoping he could be a part of helping someone else. We could handle all of this as a team. We have been married 55 years. My husband (was) a very intelligent and competent man with a very successful career with a lot of responsibility. He served faithfully helping neighbors and the community and church. He has been a great husband and father. Over the past year his Parkinson's dementia, psychosis, paranoia, delusions, etc. have dissolved our team. Together we could solve the physical demands and problems of the disease. Now I am working alone trying to help my husband who only occasionally exhibits the qualities of the husband I have known and loved. It is a lonely and hard journey alone. I am caring for him myself in our home that he doesn't even recognize even though we have lived here for almost 44 years. I mourn for all that is lost and don't know what the future will bring. It has helped me to express my feelings here--I am very isolated, but know that there are some who read this who will understand. There has to be a better day for both of us and I wish the best for all of you on this journey.j

Edited by genden69
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Hi genden69

 

May I be the first to welcome you to our little corner, I hear you and I understand.  It always helps to know you aren't alone in this.  There are many who don't understand the physical  and emotional demands that are put on us caregivers each and everyday, and think our job is easy, which just isolates us more.  I to have been on this road a long time with its ups and downs, always hoping that tomorrow will be a better day.

Please feel free to private message me if you wish, that small envelope in the upper right side next to your sign in name.  I have been in this PD thing for starting on 26 years now, and so I have traveled the same road, as my DH and I were partners until that separation that you speak of came to our little corner of the world.

Again welcome, and feel free to come as often as you want or need.

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Genden,

It does help that others understand. I am so glad that the two of you worked together for so long. My DW just says to look only at the good, so I get to deal with all of the bad by myself. Others have told me that just typing out how they feel makes them feel a lot better. Take care of yourself as you well know or you won't be able to take care of him.

Coach T

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Hi Genden68,

 

it helps to talk.  It really does.  Who else can understand the tiredness and wistful remembering of the person we married when they are sitting right beside us.  Keep posting, send out a few private messages, and know we are all listening.

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