For those who care for someone with Parkinson's disease
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By mylove On 2007.11.11 20:17
Hi, folks.

I recently entered into a relationship with a wonderful man who means the world to me. I realize that there will be some limitations to life in the future, but I'm willing and up to the challenge, whatever those may be.

Most of the posts I read concern caregiving for parents. Can anyone give me some insight into caregiving for a spouse? Right not it's not an issue, but I realize that things are progressive. I'm no stranger to caregiving, but this is a new situation for me, and I want to be sensitive to his needs and his dignity.

Is there anyone with anything to share?

By kuttlewis On 2007.11.12 08:49
I met my husband seven years ago. I knew he had PD, but only some slight tremors in his right arm were noticeable. We'd talk all night and laugh, go wherever we wanted, and enjoy ourselves. Now, he's usually immobile. When he can walk, it's with a walker. We hardly go out. He has to have diapers. His short-term memory is getting worse. His concentration is getting shorter. Everything I loved about the man is slowly eroding or disappearing. If I laugh once a week, I consider that a triumph. Is this what you wanted to know?

By annwood On 2007.11.12 19:34
Listen to Kuttleweis and think, think, think! This is hard enough when there have been some disease free years to enjoy but to startout this way is something else. My husband has had PD for 18 yrs. For the last 2 years he has had severe dementia, which is now known to be much more prevelant than the reported 20 to 30%. The neurologists now say 60% of PD patients will develop dementia. It is terrible. I feel as if I am taking care of a 170 lb 2 yrs old - tantrums, impulsive behavior, drooling, limited language skills and diapers. This is your life 24/7 for what is often several years. My husband does not recognize me much of the time and thinks I am his mother. We are unable to go anywhere, have friends or enjoys each other. You may ask about the friends - most people are very uncomfortable in the face of the situation especially when they knew the person pre disease. They go on with their lives and you are not included. It becomes harder and harder to remember what a wonderful person your PD spouse once was and you resent the whole thing. I too wish I could be more encouraging but I can't. Our 24th wedding anniversary is next week and I find myself wondering if I would have married him knowing this was going to happen - the answer is NO.

By mylove On 2007.11.13 03:08
I read the replies with some sadness. I've been doing a lot of research, but your answers were what I was seeking: POV from people who were there. I have been doing a lot of thinking.

I'm not sure that it changes anything. My love and I have had some long talks about life and how his PD affects the outcome. My comment to that is that God alone knows how our cards are dealt. It could easily enough be that he would have had to take care of me. To me, the privelege of being with such a wonderful person with a brilliant, beautiful mind for as long as we are able to share the good things would be enough to make the trials that are bound to come afterward worth it.

I don't want to take anything lightly, or play Pollyanna and say 'Love conquers anything', but.... Life isn't fair. We only get a short time here. Some of us have a shorter time than others. That doesn't mean that the people who have drawn the short straw shouldn't get the chance to live their portion of good life to the fullest extent possible... including finding someone to love them, who loves them enough to stay when it's hard.

I hope... that there is hope out there. I wish for the strength to be everything that is needed, by this man who has given me so much of himself, my mentor, my love, my friend. I pray for the ability to make the right decisions, for him, for us, for myself. I really appreciate the honesty and candor, and I wish everyone involved in this most difficult job hope, strength, and love.

I will probably be back here, if I haven't embarrassed myself too much right off the bat with my ramblings. *blush* It seems like having a good support system is really important.

By Pick On 2007.11.13 15:02
Hi mylove,

You have received some wise, albeit heartbreaking, counsel here. I just wanted to add that you mention you are younger, so presumably you will outlive this gentleman. I hope you are not only anticipating the difficulties of caring for a spouse with advanced Parkinson's, but what your own life will be like after he passes away. Will you still have a career? Savings? Friends? Your own health? Many family caregivers end up broke, socially isolated and with health problems of their own.

It doesn't have to be this way, of course, but the statistics are truly frightening. For example:

"Stress of family caregiving for persons with dementia has been shown to impact a personís immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.

Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high.

Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiverís life.

Family caregivers report having a chronic condition at more than twice the rate of non-caregivers."

I urge everyone to read more at: http://www.thefamilycaregiver.org/who/stats.cfm#3

I'm not a spouse so I'm sorry I can't provide you with any specific insights. I wish you good luck.

Pick

By LouAnn On 2007.11.13 16:03
Dear Jocdoc and Barb,
Surely want to add my empathies along with your other friends. Appreciate all the times you've been "there" for all of us during the downturns. Perhaps you can get some much needed rest while Barb is in Rehab, although I'm sure you will spend much time there with her. And, Barb may very well benefit greatly from the Rehab exercises, etc. Stay positive--hang in there--keep the Faith! Loving wishes to Barb. Lou Ann

By annwood On 2007.11.14 20:58
I hope that we haven't "rained on your parade". It sounds as if you are truly in love with this person and that is a wonderful thing. You stated that you recently became involved - make sure that some time goes by before you act. As I remember (barely) before I was married I was terribly in love several times. When I look back on these relationships I wonder what I was thinking. With the divorce rate what it is for normal couples you need to consider that it is not a real option if the spouse has PD. Talk about guilt! Just know what you are getting into. He will probably not be that wonderful person in a few years. Perhaps you should give it some time and seek some couples counseling.

Think about never having some time for yourself and I mean never. A shower is a luxury. That brilliant mind might be totally gone as is my husband's, who was a physician with many national awards. We have no good times because he is in bed and most of the time doesn't even know me. He becomes angry and yells if I take a telephone call, he tells people to leave if they drop by and he accuses me of having affairs - I haven't figured out when that could possibly happen. If I get to bed I definitely want to be alone!

Self sacrifice sounds noble (I am Catholic so I used to want to be a martyr) but there are no stars or recognition for what you will have to do. My husband was discharged from a Catholic care facility because the nuns and staff couldn't handle him! This facilities motto was "The Difference Is Love" but they quickly found out love was not enough.

You have not embarrased yourself and we want you to keep visiting and chatting. I fear we have not told you whatyou wanted to hear but our comments are sincere and we are thinking of your welfare.

By RhondaM On 2007.11.15 11:40
Annwood...your responses always remind me of my own mother and father and their situation. They were married for 60 years when my dad died of PD-related aspiration pneumonia, after 20 years with the disease, and his last 5 years were horrible. Right now my mother will say she loved him always and they had a wonderful, even a perfect marriage, but that is because the loss of him has tempered her memories. Thankfully, we all remember him as he was before he got sick, and we did love him always, in spite of the disease, and we miss him. But I also remember many times before we put him in a nursing home when she was ready to walk out the door and run away as far as she could. What you say about your husband sounds just like what my dad went through, the delusions and hallucinations and difficult behavior, and although we KNEW it was the PD and not him, it was still almost unbearable, and he was very difficult to handle.

mylove, Like everyone else has said here, please think long and hard and get some professional counseling if possible before you make a decision. My parents were totally devoted to each other, and it almost destroyed their long, long marriage when my dad became someone else entirely, and my mom almost died from the 24/7 care that she could not get away from. A phone call, a trip to the store, a walk - all these things made my dad feel she was neglecting him, and when he went into the nursing home, he asked her if she had a sweetie. Like annwood said, that was the last thing my poor mom was looking for!

It's a very dreadful disease that takes our loved ones by inches every day. After knowing what I know, there is no way I would willingly go through this nightmare. No way.

Rhonda

By annwood On 2007.11.15 20:18
Thank you, Rhonda. I think you really know how I am feeling. It is so hard to remember my husband as he once was. I just know that he would never have wanted to be this way. While you are in the midst of it; however, you can't help but think the PD patient is doing this on purpose.

At first I was reluctant to respond to mylove. My anger and frustration may cloud my replies. I just don't understand how anyone would willingly put themselves through this. I remember 15 yrs ago my husband was already diagnosed but still very active with few problems. We attended a PD support group primarily to hear the speaker. At that meeting there were several people with advanced PD and we were horrified. We were also certain this would never be our situation. I guess we all go through some denial and I am afraid mylove is in that frame of mind. I don't think it is possible to imagine just how bad this dsease can be and how very hard it is on the caregiver.

By RhondaM On 2007.11.16 11:20
Annwood...Again, same thing. My parents went to a PD support group before Daddy got so bad and they were horrified. They never went back. There is some denial, I think, and also hope, but if a PD patient lives long enough, I'm afraid they inevitably go through some horrible changes. If they don't, I think it would be the exception, not the rule. And yes, it does seem like they are doing it on purpose, even when we know they are not.

It's so difficult, I remember it as the worst years of my life and I was mostly a spectator and part-time caregiver, I can not imagine how hard it was on my mom.

Poor Daddy. I miss him so, but would not want him back as he was. But thankfully I only miss and remember the real Daddy from years ago. The sweet, unselfish, intelligent and good-hearted dad.

Rhonda

By RhondaM On 2007.11.16 16:29
I didn't mean to imply that he wasn't still goodhearted and sweet, etc., he still was beneath it all. And we would glimpse it at times, and we got the sweet gift of him becoming more like that at the very end, but oh, the years of difficult, unreasonable, self-centered behavior, the demands and paranoia and sometimes violent anger. I hate PD.

By Gidbud On 2007.11.16 17:47
MyLove,

I too am in a relationship with a parter in early-stage PD. We have been married for 25 years this year, and she and I are 46 and 47 years old respectively. We have made a commitment to fight this disease as long and hard as we can. My wife excrcises regularly, eats right, and took a reduced role at work to help control her stress. We have gone to support groups and seen what lies ahead, but refuse to bury our heads in the sand. In some ways, we are lucky enough to know just how good we have it right now. Those without PD don't have that view of the future to sweeten the present.

You need to manage your stress as well. My advice would to make sure you have your internal "stress radar" on and manage your caregiver stress well.

By mylove On 2007.11.17 15:39
Hi folks!

I am back. Took some time to read and digest your responses, and my own gut reactions to the situation.

I can't go back and undo the fact that I'm emotionally involved. There remains the question of where things go from here. To his credit, he's been very forthcoming about the reality of the situation and where it will end up.

The only solution I can come to is this: I'm putting my faith where it belongs, and asking for help in making wise decisions. We're remaining very close friends, and enjoying the time we have together for as long as we possibly can. When things make that turn for the worse, we'll cross that bridge when it comes. I'm reading, researching, asking questions, learning everything I can, so that I can be educated enough to help in the ways that I can.

Any road we choose can turn out to be the toughest walk we've ever taken. The advantage of this one is that the view down it is pretty clear. The choice at the crossroads is whether to be the kind of person who turns away, or the one who is strong enough to walk that path, knowing it's going to be painful, stressful, difficult, and will ultimately end far short of the destination you hoped for. I know I've heard from several people who wouldn't choose to do it consciously.

I'm not sure what to say, other than thank you for listening to me and accepting me, and giving me the honest truth and the tools to make an educated decision. I hope that along the way, with a good support system and places like this to reach out and share, that we can make the best of what God's given to us. I am in counseling, and plan to continue to use that resource to support my decision.

Gidbud, I wholeheartedly endorse what you said (and said so poignantly): "Those without PD don't have that view of the future to sweeten the present." You could replace "PD" with "cancer" or "Alzheimer's" or any other terminal illness. I've lost a few good friends lately to different things, and one thing stands out very clearly: our time here is not eternal. There are a finite number of years to complete all the things we hope to experience in this world. Our loved ones with PD have a shorter time to condense all that they hope to do in. For now, I'm treasuring every moment, knowing that I missed a lot of the good ones earlier on, and knowing that with each one we savor, it's one shorter. I can rail at the unfairness of that, or I can choose to hold each one in my heart like a treasure, keeping each memory safe to hold onto when the going gets tough.

Thanks for wishing me luck. Thanks for being here for people doing the unimaginable, to hold them in your hearts when they get discouraged. Thank you to all the caregivers, being what you never banked on. I hope that if it were me on the other side of the fence, I would have people like you to care for me, so diligently and with so much love.

By kuttlewis On 2007.11.18 08:21
Dear mylove,

After all these discussions, I believe it all boils down to this: "Do unto others ..."

I'm not patient or very good at self-sacrifice, but every day, I ask myself, "What if the roles were reversed?"

As a friend told me last night, live as if you were dying.

Inge

By grazia On 2007.11.18 16:04
Mylove, if you really feel that you love this man, think alot before letting go away this love. Probably many people on the forum disagree with what I say, but I am convinced that love has a very powerful strength, sometimes even over sickness. And above all , love remains in our souls forever, much more than the bad moments of our sorrows. You could never regret having really loved in your life, because as you say, our time here is not eternal. All of us could marry someone who in the future could get very ill, and I dont think that there are so many of us who would make their choice depend on that chance...What meaning would have then, this word LOVE?
I have lost a dear one because of PD, and today that everything is over, the only things that survive in my heart are the memories of how much I have loved and how hard I have tried to fight together with him ( it was my father ). The anger, the frustration, the bad days, the misery...all these feelings have disappeared.
Mylove, loving is never a waste, so live fully your story and get informed as much as you can on PD,because it could become a bad enemy, but dont let it forbid you to live your feeling.
This was just my opinion, good luck...Grazia

By colettem On 2007.11.18 19:27
I haven't weighed in on this discussion yet because I'm not dealing with a spouse (or potential spouse) and I'm doing this from a distance rather than everyday. But caring for my mom has definitely brought up the subject of "what if?" between my husband and I. These are some of the things we've either talked about or I've thought about if it does happen to us...

Learn all you can about the disease, which others have said already. I'd strongly suggest reading Saving Milly, by Morton Kondrake, which I learned about on this website, as it's real life and not just a collection of facts.

Enlist help early on. We hired a caregiver a couple years ago, before the symptoms became too difficult. She's been a godsend for us. I think the reality is you will have to have some kind of help eventually and if you can discuss that possibility and reach some kind of understanding about that, it can really help. I see many elderly people who resist getting help when it would make everything easier for everyone. (Easy for me to say, I realize that it's a sign of the change from independence to dependence and that is a hard emotional bridge to cross.)

I read somewhere that if you're going to make promises about future care, it's best to simply promise that you will always try to do whatever is the best for them, rather than making specific promises like "I'll never put you in a nursing home". At some point a nursing home may happen and it may save you the emotional guilt of dealing with that broken promise. This goes along with recognizing the need for help, you may end up having to have the help of a nursing home.

There's also the aspect of living wills and being very aware of each other's wishes for that time. And then preparing for the financial side of things like long term care insurance (although I don't know how expensive or possible that will be if you've already been diagnosed with PD --has anyone looked into that?). My husband and I are starting to get more serious about preparing for whatever health cards are dealt to us, as we know that it's almost inevitable that something will strike us.

Those are just some of my thoughts. And I join with the rest in wishing you wisdom and endurance as you enter this arena...

Colette

By LOHENGR1N On 2007.11.20 00:26
WOW!!! ............I've been absent from posting on here and after reading this thread I'm almost dumb struck (I know that to some of the "long timers" on here it is hard to belive ...ME at a loss for WORDS!) LET me speak on this from a "Parkies" point of view! It sounds like a bunch of people suffering from "burn out" and I'm sorry some of you feel that way, I can only imagine the hardships of caregiving. .......... When I started having trouble before the Dx, it was apparent someting was definatly wrong with Me.....as things (balance problems, dropping stuff etc.) went on my "loving" wife bailed! So there I was sitting in a Neuro's office alone, hearing you have Parkinson's Disease! 33years old, the gavel fell, sentance pronounced! Divorced, three young children. That was in 1986. I sought no long term relationsip (Why? To burden someone else? Who would want "damaged goods"?) When a woman would get close I'd back off saying you don't know what you'd be in for! In retrospect was I an idiot? Did I waste all that time? Tick, Tick, Tick each day marching toward the inevitable? Who knows? But I do know one or two would have stuck by me (was it the fear of abandonment again in rough times? The hurt?). Love may not conquer all but it does give strenght to fight on! Please remember a blank face or frozen form doesn't mean a loved one isn't smiling on the inside returning your love, thankful for you being there (frustrated at not being able to tell you that!) So if I was to give any advice I would say by all means yes pray for wisdom, gain information on this Disease BUT also listen to YOUR heart too! And try to remain the eternal optimist (there may not be a cure but if you look you will find spots during the days that bring sunsine and warmth unexpectedly into life). Well my 2 cents worth seems to have grow into a nickle! Take care all, hope the Holiday is as good as it can be for you & yours! Also to Doc & Barb know my thoughts an prayers go out for and to You my Friends!

By kuttlewis On 2007.11.21 08:28
Lohengrin, how do you cope?

By brandila On 2007.11.21 22:33
Hello!

I'm new to this forum and just had to respond. My husband was diagnosed with PD exactly a year ago. We have been together for seven years, married for almost four. When we started dating I notice a slight tremor, not always but sometimes. It was pretty much a given that he had pd, as his brother has it, (now diagnosed as msa) and his mother had it as well. I knew from the very beginning that he would likely be diagnosed at some point in the near future. I thought long and hard before committing myself to a man with such a degenertive disease. But the way I saw it - either one of us could get cancer or alzheimers or any get paralyzed in a car accident - just too many unknowns. Why would I turn my back on the love of my life just because he has pd?

I am 30 years old. My husband is 51. We have a one year old little girl and we each have a son from previous marriages. While we can not live as if he does NOT have pd, we will not let it define us. We decide to have a baby knowing full well the ramifications should my husbands health worsen. It is a very scary thing to have an older husband, especially one with pd. It's even scarier to bring a baby into the mix. But we love each other very much and we refuse to let pd ruin our lives. We want to do as much "normal" living as possible while we still can.

My brother-in-law is in very bad shape. He may not make it another couple of months. We are praying that we will still have him through Christmas. So while I am young, I am not niave in not knowing what is in store for me. I see what my family goes through - I see what my sister-in-law does. I see the toll it takes on her, finacially, emotionally, spiritually, physically. I know that I will likely be there one day. But marrying my husband AND having his baby were two of the best decisions of my life. I have never been happier, and with the exception of his pd, I would not change a single thing about our lives. We have a very happy marriage, and I do believe that pd plays a large role in that. We are able to appreciate what we have while we have it, and we thank God everyday for each other.

By mylove On 2007.11.22 00:48
Thank you so much for the hope. Every day that I spend with my love I realize more and more that this label is not the total definition of who he is. We know the reality. We also are choosing faith, and life. Neither of us have had a very easy road in our lives up to this point, and we'd both pretty well given up on love. Your story sounds so much like mine. I've prayed long and hard about this situation, and I've felt from the beginning that this is where God wanted us to be. He is the love of my life.... I can't imagine being apart from him, nor he me.

Love means taking our spouses, for good and for bad, in sicknesss and health, open eyed.. open hearted... for life. I believe you: one of the most poignant things about this relationship is our awareness that each moment together is a precious gift, and we're unwilling to waste it, or waste time living in fear of the future unknown. Bless you for taking the chance.. and for sharing your experience.

My heart is full... I have so very much to be thankful for. Including the hardships, for they make the good things so much sweeter.

By Pick On 2007.11.22 04:09
It is so good to see you post again LOHENGR1N. If you think your absence from this forum has gone unnoticed you are wrong! haha

On another note, I'd like to remind everyone that kuttlewis and annwood HAVE stayed by their spouses sides..... "for good and for bad, in sicknesss and health, open eyed.. open hearted... for life" as mylove says. While I admire the expressions of love and commitment, let's not forget that these women have walked the walk, talked the talk and continue to care for husbands who no longer even remotely resemble the men they married.

By mylove On 2007.11.22 15:09
To everyone: God bless you and what you're doing. May you all have a very happy holiday, and I wish you the best. My hat is off to you.

By Gidbud On 2007.12.17 09:56
[deleted]

By annwood On 2007.12.18 00:02
Thank you, Pick, for the support. To Mylove I hope I did not sound too cruel. It is such a very hard decision and I just remember when my husband was diagnosed I thought it was not going to be a big deal. It has been HELL. I only wanted to let you know how very difficult the days ahead may be for you but realize that only you can make that decision. I don't think any of us would ever say "I told you so" so I hope you would consider staying with us. I really don't know how I could have gotten through some of the trials without the support and understanding of the group. Good luck to you.

By punky On 2007.12.18 12:36
So many similarities and so many differences. But then isn't that what life is all about? And wouldn't it be boring if we all acted and reacted in the same way? As good and real and true as all the "advice and comments are" none of us can predict how or what we'd do in another person's shoes, or for that matter what we might feel and do in our own situations at any given hour or day or week. And particularly with PD ... every patient is different; every caregiver is different; we come from so many different backgrounds, religions and philosophies; different cultures and different countries. And who's to say who or what or which are right or wrong? They are what they are.

We just have to follow our hearts and live in the moment. And if my personal experiences mean anything at all -- those moments will be different and challenging with every passing hour. It's a damn roller coaster and all we can hope for is that we land on our feet when we get off. We need to take care of ourselves and our patients. We need to love and not love; to be happy to be sad; to be angry and at peace; to look back and to look forward; to pray and to curse. In other words, we need to live!

Be kind and gentle to your loved one and to yourself. When the moments come when you can't hold your head up, then walk away for an hour, a day or a week. Things that look overwhelming and either all good or all bad are only fantasies - neither good or bad or right or wrong.

God Bless!

By Barb Gates On 2007.12.28 14:04
I did not read ever comment completely, but I got the gist. Please keep in mind that Parkinson's treats each patient somewhat differently. We have two fortunate things going for us (we, meaning me and my spouse.) He didn't get PD until late in life, he is 94 years old and was diagnosed about 4 years ago. I know that this is sad, but I don't want him to get to the point of not knowing what is going on around him, he does have some dementia. His doctor says his condition is progressive, I thought he meant the PD, no he meant his age. If this is so all of us have this issue. I guess I approach this situation most of the time with a sense of humor. I mentioned two things, my husband is not beligerent or aggressive, he is quite easy to get along with. I think you need to lean all you can about PD. It might also help to join a support group, I notice that many are appalled by the others they see with this disease, our thinking has been that there are others worse off and that we can deal with this. We have been married 37 years and this sharing of time does help. I also feel you should see what other support is available, does he have children or family that can help? It is very difficult to cope with this alone. Our youngest daughter movedf across country to be of some assistance, even though she works full time, I appreciate her company and support. I wish you well. Please let us know how you are coping.

By mylove On 2007.12.28 18:36
Thank you so much to all who replied. I thought you might enjoy an update.

We did decide to jump full body into this grand river of life, hands held. My love and I (it sounds so trivial to say "my boyfriend and I", as if this were high school, and we were teenagers with no other thoughts than where to park at the theatre on a Friday night) have begun to see each other seriously. We have both tried this coupling thing once before, and now, older, wiser, and ready to embark on our second lives, we have gratefully and joyfully decided to try again. We both bring to the table the wisdom that comes from having made (hopefully) many of our mistakes in the first go-round, and look forward to the learning that comes with any new relationship. We also bring the vast and shattering gratitude at finding in each other another a quiet peace and a deep and gentle love that neither of us had known before.

Each of us has children, some of whom are nearly ready to leave the nest within a few years, and some who are flown. Between us we have two large extended families, which, on his side, has been a good source of support for my love in the past, and on whom I'm hoping to be able to rely for some support in the future. He is also one of these blessed people to whom people gravitate, because of his quiet strength and his wonderful personality, and has a web of friends who would do anything for him.

It's early in this ride, and while we have to make some concessions to the meds and the schedules, we aren't excessively far down that road yet. We are both aware of the reality of the future, and what may come. But the Parkinson's doesn't define him. His freedom came when he shook off that label and reclaimed who *he* was... a man, with hopes and dreams, with passions and emotions, with laughter and with love and a new future that we can look forward to, no matter what comes. We are going to consume this life with gusto, for as long as God allows.

The decrease in his stress level has made a big difference in his health and happiness. Hopefully we will be able to continue to maintain some ground in that area as long as possible.

As Barb said in the last post, *life* is progressive (We ALL have a terminal disease! lol I love that statement.), and some of the long term care issues would have happened eventually anyhow. We, too, like so many of you Iíve heard from, are taking this particular facet of our lives, like all the rest, with optimism, with love, and with a sense of humor. God bless his wonderful personality... he is truly a delight to be around.

As he says, life is so much more beautiful when it's two of us to face whatever the world has to bring.

Again, thank you to all of the wonderful caregivers out there blazing a trail for those of us that will come behind, sharing the wisdom and tips and understanding. Your patience and insight are appreciated more than you know.



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