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Topic a couple thoughts or ut-oh it's him again.. Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2013.08.22 16:57
I stayed off a running rant because I recognize the need to let it out, get it off your chest and go on. Anyone who's been around the forum for awhile knows I do once in awhile. Sometimes my posts are taken as a criticism (sp?) of the rant, they aren't what they are is a try to give voice and understanding of and to my fellow patients who might not be able to explain what or how they may feel.

Also I fear rants because they can and will get away from us. As others join in they take a life of their own and soon it is a bashing of patients and things We can't help. And I stick my nose in them, sometimes it can turn ugly and some have hurt feelings. As I said We all need to rant from time to time but not lose any perspective of why we're here, to help each other. Rants can sometimes be used to justify being "mean" which is never right. We're here to try to help, cope and understand this disease and it's effects upon Caregivers, Patients, Family and friends.

Okay here goes someone will get up in arms over this, We didn't get named the number one web site for Parkinson's Disease by Caring.com for our rants! We got there by all the hard and selfless work of everyone helping with understanding and tips to care giving. Not with a poor Us attitude but with a okay here, this is what we found might help with that or well maybe that is being caused by this, kind of we're right here in the trenches battle with this disease. A we're here with you and will help you through what's going on all we can attitude. At times it overwhelms Us and we have to rant or go crazy. We get it out we're no "pity party" site, we don't want pity we want to find a cure, to make life for both Caregiver and Patient more tolerable until that cure is discovered. We are a cross section of Parkinson's Disease, Some have lost Their loved one to it and still come to help others and to them I can't even find a word that expresses enough gratitude to even sound full enough. We have new members staggering in daily confused, in shock looking for help and guidance looking to make sense of a life suddenly turned upside down. Many too many have passed on. Friends and fellow combatants Who fought the good fight till the end and We should Honor them by passing down the wisdom and knowledge they bestowed upon us while here. These things set Us apart, these things shine like a light upon a stormy sea to those who come to this site, those who echo I'm so glad I found this forum!

Well I guess I've ranted now. I know We all get down once in awhile ..even me! (lol) This internet thing is a strange place. We make friends, sounds funny doesn't it? Make friends with People you never saw? Many You never even talk to just type to? But We do! Having entered My 28th year of living with P.D. many say you're lucky and yes I guess I am, but with that comes loseing so, so many friends I've met along the way. Saddened with each loss. Saddened that "the cure" hasn't been found in that time, saddened that the same claims resurface cyclically every so many years. Saddened by the steady march of new patients entering the fight and saddened by the steady march of those who've fought the good fight and saddened for those who left behind struggle to now somehow must forge life anew. It is a ruthless Disease that brings us here. We need everything we've got to fight it. Rant when you must then go on don't sweat the small stuff (it might seem big at the moment but it really isn't) Don't ever take it out on each other (neither caregiver nor patient asked for this) If all you want to do is complain and gripe We at least I don't have time for all that other sites might be better suited for that, then you can help others here after you've unloaded :) Cherish every moment you can now because Parkinson's Disease always wins in the end and will unless a real cure is found. Hopefully in time for our many new comers! For Me and others? Well for Me that's okay I've fought the good fight and helped some along the way, I'm fighting on till whenever that end comes and doing the best I can to help along the way. Take care, best of luck and hang in there

Doc Holliday: What did you ever want?
Wyatt Earp: Just to live a normal life.
Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By makrivah On 2013.08.22 17:17
Al, thank you for your wisdom. This week marks the eighth anniversary of my husband's PD diagnosis. Since I stumbled on this forum in December 2012, I have learned so much. At times I become terrified at what may come. But most of the time, I just absorb what is shared and do my best to live up to the courage and patience shown by others.
With gratitude, makrivah

By carman96 On 2013.08.22 17:35
Of course we are aware of how hard it is for our pwp. But sometimes it is so overwhelming to us caretakers. When we have a pity party it is not just ourselves we are crying for. We try our best to make them comfortable, take them here and there to appointments, do everything to run the household, etc etc etc. Then when they are irrational and even dangerous and threatening at times, we wonder how we can go on like this.But we do it day after day with so little thanks it sometimes seems impossible to deal with. We pray for the stregth to carry on.
That being said, today at weight watchers I asked one of the ladies there how her husband is doing since I knew he was getting chemo. She said he didn't make it. That kinda put things in perspective for me!!
One of the great things about this forum is just knowing we are not alone when we feel like we do. I've learned a lot here.
Hopefully we can try to help each other with ideas of how to make things better. It just seems like so many of us are having a hard time coping right now. Maybe it was the blue moon the other night!

By carman96 On 2013.08.22 17:40
And please don't make us feel guilty for the way we feel. Maybe others have more courage or whatever it takes to not complain. But we are just human after all and we are doing the best we can for our parkies!

By jcoff012 On 2013.08.22 17:52
Funny thing, Al, I was sitting on the couch, stroking my grandson's leg (he's almost 4) to soothe him to sleep, all the while watching Carl take his afternoon nap, when I was contemplating writing a post similar to yours.

I tire of the ranting, too. Yes, I do understand it, but it makes many of us weary, including my PWP. I even left the forum for awhile because of it all.

Yes, we do make friends and friends who have lives that include desires, visions, and experiences other than PD. Sometimes it is just simply wonderful to find someone who can discuss a topic that is near to our heart...that heart that used to relish in a joy we may no longer be able to enjoy with our PWP, but was and is part of life at an earlier time. We find a release in finding a friend who shares that joy and it, too, gives us a respite of sorts.

Al, you and Olpilot are beacons on this board. I search out your posts. I find them refreshing and honest...and, mostly, helpful. I hope others realize the value of your input here. I do.

OK, it IS a caregivers' forum, but PD is one of the unique diseases that does not always give voice to the ones who need it most. I think you both will understand this statement....When I first came on the board, I NEEDED one on one information. Having the love of your life with PD is certainly different than having your MIL...BUT, when my husband asked one day early on, "WHY are you going to a CAREGIVER forum...I don't need CARE, yet?' At that moment, over a year ago, year three for us, it occurred to me that perhaps this was a good place for me to visit and comment, and try to be positive, but NOT to complain. After all, he was by my side for five years' treatments and appointments with rarely a complaint, unless it was that I was giving in and giving up when I had so much to live for. I love this man and I refuse to dishonor him by complaining.

Some have said he and I are too positive...maybe we don't face reality...maybe we aren't too far along, so we have no idea what PD means. To that, I say, life is what you make of it. It isn't as pretty and uncomplicated as we would like. But, it IS life and we must adjust...and, sadly life has not been easy for us, but we survive...some of it. Our losses are many and we daily face cancers, PD, and CP. That's life as we know it.

My husband was a Marine and, as most will tell you, there is NO such thing as an EX-Marine...he is strong in mind and body...at least he was. Now, he is a frail man, weighing far less than he did in his prime, drools constantly, has excruciating back pain, shuffles when he walks, has tremors on both sides now, and moves far more slowly than I can stand...But, he says, and I listen..(Sound familiar Al and Ol?): "I am NOT dead, yet. Let me do things as long as I can. You keep living, so that when the time comes, you won't resent having to care for me." His positive attitude gets ME through this.

One last thing from me...Sorry, Al, but you got me started...lol...Our son in law said it best...My husband was, and is, a master carpenter. So, when he was told of the dx, he said, "Mom, I want Dad to die with a hammer in his hand and sawdust on the floor. If I have to, I will hold his hand and sweep up the dust when he is done."

And, so, we go on...Much love and many hugs to everyone here. And, I agree, everyone has to rant or vent, but remember...the one thing that goes through my mind daily is this...What it were YOU with PD? Jane

By jcoff012 On 2013.08.22 18:03
Carman, you got to me with "it's not just us we are crying for"...well said...well said...

I think the problem is that the Internet does not always translate our words as we want or feel. Perhaps the lashings out are not as harsh as the written word states...maybe we all need to reread before we post? Hugs to you...

One thing, I am very impressed that you still attend meetings and are committed to WWs...You keep me going ;) Thank you!

By carman96 On 2013.08.22 19:57
Thanks Jane, yes I am still committed to WW. I know I need to stay as healthy as possible to take care of my husband.
I do like to try to stay positive but the truth is I am exhausted. The last few weeks have been really hard. My husband has been really going downhill fast, especially mentally. Its hard to stay positive when everything goes wrong at once.
Al is right about grieving. That's what I think I am going through and should be addressing it some other way.

By LOHENGR1N On 2013.08.23 00:34
carman, My friend thank you, grieving and the process of it is so important in diseases like P.D. and other progressive diseases. Unlike grieving at the death of a loved one (then it is over, hard long feelings but one works their way through it and them) a disease like this is like a constant grieving, We come to terms with the way things are and then things change again! Behaviors, mobility, cognizance, everything! And We again grieve for the loss of more of these functions, like a never ending carousel ride just seemingly going in circles coming round to another loss. Or like a car mired in the mud, We spin our wheels so hard trying to make headway and only sink deeper into the disease. This disease chews Us up and swallows Us and as time goes on I'm coming to believe it is just as important to read and learn about grieving and what it does to one is just about as important as learning about P.D. itself and what it does to Us. As important as it is to understand about our medicine the effects and side-effects, the dosing and what medicine helps what symptom. I think to learn about grieving it's effects and symptoms need to go hand in hand with this disease. Let's face it this whole situation is a mess. If one is starting to have anxiety or panic from medication or lack of it, even needs tweaking and they aren't aware of the need We could be clingy or seems like we're being more demanding. A Caregiver notices but without the tools of understanding of grief it can feel like we're invading personal space and they feel need for separation space or room to breathe. This could be from not the patient per sae but because it is another change and we grieve another loss however if we ourselves don't know that then it is only natural to blame the person we think is making us uncomfortable. We may think being demanding. When it is the whole process of progression of disease and our both caregivers and patients grieving over another concession and not knowing how to work through it or what to blame but each other. Again with these posts I'm not trying to make anyone feel guilty or lacking in compassion....You all are some of the most compassionate people anyone will ever meet! I'm trying to help make sense of this senseless disease and what it causes as it works it's way through our lives. Some place to turn to in the dark of night when alone trying to sort out the what and why of the day and worry of the next one. Will it make it all better? No way but it will help just a little maybe and in the end isn't that what we pray for just a little help here? Something to get us through to the next crisis? Be easy on yourselves and each other.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By mylove On 2013.08.25 10:05
Does anyone know if there is a place to go online to talk about pre-grieving? I can't seem to find anything. I have a counselor and meet with her, but like carman, I need to talk to other people who are going through it. All I can find is grief groups for people who have already lost their loved one, and that's not the same. I thought this would be the board for it, but this board may best be left to the nuts and bolts of caregiving rather than the emotional stuff.

By Pearly4 On 2013.08.25 10:54
Getting back to the original "mean" thread -- I was struck today with the thought that in hindsight I wish I had been more aware of the natural tendency of we humans to respond to the visual clues people offer to us in their speech -- short version, I wish I had paid less attention to my mother's face and asked more questions. Was her mean remark meant as "mean" or "angry" or was it a case of she was feeling sad and unable to visually express her feelings? Was it a self-effacing remark not intended for me? And obviously, it also might have been the dementia itself doing the speaking!

I probably would have been better off exploring her feelings with her than simply reacting to what I THOUGHT she intended when she said something.

Which leads me to another thought that appears to be rearing its ugly head here -- its not US against THEM -- PWP's don't have it worse than us, and caregivers don't have it worse than PWP's! It's hell for all of us and we need to respect that personal hell whether caregiver or PWP!

By chroop67 On 2013.08.25 13:38
I don't see it as you do , Al. I think we don't come here to whine or complain. We come here because its the one place we may find one other person that is feeling or experiencing what we are. This is a sanctuary for many, a place where we can be raw and unfiltered. Outside of this forum we smile, we rise up to meet challenges and we endure. Here I get to take a step back and at times let it fly! When I 'rant' it is not at the PWP but at the disease. Being a caregiver provides me with many reasons to feel guilty, all I want to know is that I am not in this boat alone. This forum provides that but I'll take mine without a side order of guilt.

By Pearly4 On 2013.08.25 14:01
Well said chroop67!

By jcoff012 On 2013.08.26 12:50
Perhaps the problem with online communication is the lack of nuance. While posters may not think what you post is ranting or complaining, but to many it is. To many others it is simply a heartfelt way to vent and then move on. We think we know someone, but can we really know them through this form of communication. All we see is what you post, so if it is negative, we wonder what life is like for you and your PWP. Is it ALL bad ALL the time? The trouble with this type of discussion is that it becomes accusatory, as Al pointed out. It doesn't have to be...Just don't make it personal.

PD is hard enough. Daily living is hard enough. No one needs to offend anyone here. We are all in this together.

As an aside, when it was obvious I wasn't posting for awhile, several commenters here sent me emails asking me to come back because the board was "doom and gloom" and "sad and offbeat". They assured me being upbeat and positive was a great help in the daily life of the caregiver. These are others' words, not mine. I left because I, too, found the discussions to be sad and accusatory to the PWP.

Many of you feel that MJFox should not be the face of PD. However, have you EVER seen a post or comment from his wife about PD symptoms and living with PD that wasn't positive? I chose to be here to ask questions, offer hope and help if I can. My husband did not treat me badly going through my illness, so I won't do it to him, especially in a public forum. That's my take on this discussion. Nothing personal, no accusations...Jane

By McCall On 2013.08.26 18:41
I also think since this is a caregivers forum that it SHOULD be a place to rant. I think most of the rants on here are not against the PWP but against the disease. But I for one don't want to be chastised if I do complain on here.

Of course it is also a place to be positive whenever that is possible, and also to seek info or help.

By EachDay On 2013.08.26 20:23
I agree with McCall. I don't see what have been called rants anymore than descriptions of what happens each day. They are not critical of the PWP but of the disease and what it has done to our loved one. We all need to hear so we don't think it is just happening to us alone. All of us also need to be able to tell someone without getting the usual response from those who do not understand PD "oh yeah, that is how my spouse acts" when we know that is not the case. This is the place we thought we could do this without needing to feel guilty.

Most of spend all day trying to be positive and helpful.

By chroop67 On 2013.08.26 22:44
To my knowledge the only time a thread degrades to a negative is when someone who is sharing (aka ranting), is chastised for doing so. So lets all agree to stop and support instead. If you feel a thread is too negative please refrain from stating so. I cherish the positive moments in the life of my mom but this disease provides many more negatives. It is said that it takes a 100 positive comments to negate a negative. I collect the positive in the recesses of my mind so that in the difficult moments I can glean some relief even if only for a moment. Thank you to all who comfort me in my moments of misery :)

By olpilot On 2013.08.27 00:33
As the pwp coming here is an insight what may OR MAY NOT becoming, it has become a sort of refuge. It gives me an idea of what maybe going through my wife's mind, and I guess I like to post what is going through mine. Funny, my wife needs carpal tunnel surgery in both arms, she asked me if I could handle taking care of her for a while, we she can't do take care of hygiene things. I have never thought of having to do something like that, but she has. Whether it comes to that who knows.

I come here every night to read, and get a feeling of what possibly could happen, I don't dwell on that part, but I was.a boy scout half a century ago.

By LOHENGR1N On 2013.08.27 00:44
Well, Yes it would be nice if we could speak as we please on the forum. However that's reserved for others and not me. If I try to give a problem a different point of view from a Patient's perspective I should shut up. Not post because I'm chastising everyone. I should shut up because I'm making some feel guilty? I've got news I'm not who or what's making one feel guilty. But then those who complain about my posting on rants don't want to hear that either so? I tried to explain I'm not against rants and know they are needed but that's not noticed.

You want a rant? I could give a good one! Funny if I help anyone with this disease when they turn here looking for help and explanations that's okay. Heaven forbid if I say it's no big deal about a complaint. Shut up you're not a caregiver! I'm my own caregiver, Some, many don't understand why I stay here. I question that myself at times like these. Many Who have left ask that question of me. I've asked it many long nights myself. I stay because of the one patient and caregiver I can help. The stray who comes looking for information or someone in crisis over a symptom and side-effect. I'm not going to cure Parkinson's Disease here. I try to help, with the grieving process I've tried to explain about where the anger and depression come from. I've said it is okay to rant but shaking ones fist at Parkinson's Disease and screaming I hate this disease while it may release tension for that moment .....then the same tension mounts all over again. Learning the stages of grief and their symptoms can help you recognize what's going on and help say oh no P.D. you got me on this one before I know what you're up to so I'll concentrate on another facet that's going well or try it a different way. I'm trying to help ease the burden of this disease. I stay on because I know how scary and lonely it is when handed that diagnosis, I know the where do you turn feeling. I know this better than many (you'll believe that or not I can't control what you think) I had to find out about this disease at the library or in book stores, I had to make the effort to seek out and read anything I could about Parkinson's this Internet stuff was new, computers scarce and not much online either. Do I want a pat on the back? No! Do I want pity? No. I don't even want a thanks or that helped.

You know, reading rants and sometimes the cryout common in them is a feeling of being unrecognized for all the work Caregivers do. And it is monumental make no mistake about it, you do deserve recognition lot's of it. I labor here trying to help you caregivers also to help you understand and cope. The grieving is so crucial to understand in a disease like this because with every loss we start over or re-visit the stages of the process all over again patient AND caregiver.

As I said above I do not want any pity. I do not want a pat on the back. I've come to not expect even a that helped or thanks but on those rare occasions they are uttered they blaze like stars. What would be nice is to be able to as you say, state how I feel without knowing (risking) I'll be chastised, to be treated as everyone else wants to be treated. That's all. Those who are complaining about my "butting in" because I don't understand what goes on in your life? No I don't understand everything, some but not all. Nor do you understand everything in my life. You're a caregiver, I'm a caregiver, I deal with my care every day, also I'm a patient I personally, on a level caregiving can't ever touch battle this disease! And I'm here every day trying to help anyone however I can anyway I can. And all I ask for is the same consideration you ask for, I'm only human too you know. So before you line up to again say it's a caregivers forum and I should be gone or be quiet (unless you need help) I should consider what you do and put up with daily before posting my replies, I ask you do the same for me.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By Mary556 On 2013.08.27 08:14
Lohengr1n, I hope you will Never Be Quiet.
Thank you for all you do here.

By Pearly4 On 2013.08.27 09:38
I would offer only this parting comment and apology -- first the apology. I too am human, I too should learn to not post until my comments are well thought through, I too should even then post probably half of what I do.

That said LO -- you confuse me. Perhaps others as well? Are you the resident expert, the resident Parkinson's patient, the resident self-caregiver, the resident mini-moderator, or simply participant? Yes, I see rants and ignore them. Some I read and realize, having been a caregiver, are simply a release. Some I read and realize its a Parkinson's patient who may need a little extra patience. Some I read and realize even an expert needs a moment occasionally. I read and expect something better of others.

That being said - I choose now to become a non-participant and believe my contribution to the forum has become redundant and totally non-essential, so I am leaving. Not leaving angry, not leaving miffed, just leaving, and leaving in far better shape than I arrived thanks to the forum and its past, present, and perhaps even future, participants! I'm grateful to all of you and most of all, to you Jim!

By Mary556 On 2013.08.27 12:24
Pearly4, thank you for all your gifts. Because of your helpfulness and kindness, my Mom is no longer choking on her pills.

By jcoff012 On 2013.08.27 12:51
OK, I will say it...enough is enough, don't you think? Pearly, I left for awhile, too...I think the point of a board is help...we all have a lot to contribute, even if we don't think so at the time. Sometimes, we just need a little push or a little information....let's not dissolve into an abyss of recriminations...

NO one is happy with PD...NO one is content to be here, but we are better than this...ALL of us...I suggest we close out this topic and move on...we all have far too many battles to fight than to fight each other. We all care...each and everyone of us...Hugs, Jane

By parkinit On 2013.08.28 17:13
I don't agree, Al. What may appear to be "ranting" may also strike a lightbulb in our minds and BE HELPFUL: "Hey, my spouse does that, too, and maybe it's not the spouse, but PD." What a great enlightenment this moment is for the caregiver. I learn. Even from the rantings, I learn. I rant, too.

Are we to become a "restricted site" that only blooms of sweetness and flowers and goodness or are we going to be allowed to tell it like it is? If we are to become a site that waters down the truth, then this place may not be for me, either.

I repeat from an earlier post: We whine, yes. We wail, yes. We complain, yes. But we do love our PWPs. We just need a place to go to vent and this is the place for many of us. Once we get it off our chests, it allows us to go back, take a deep gulp, and help our loved ones fight the battle.

I appreciate all the posts - both flowing with milk and honey and those that show the darker side of PD. I need to know it all.

Thank you Al, for your always honest and valuable opinion.

I want to know - are there restrictions on what can be posted on this site - other than those who post their own self-imposed restrictions? I am guilty of this as well, and perhaps we should all back off of one another and as long as the content can be traced back to PD, then why can't we all speak our minds?

By jcoff012 On 2013.08.28 19:14
Park, I think,quite simply, that a great many come online at the lowest points and read a post that does not resonate well, so they lash out...Then, feelings are hurt, the course ofthe post veers way from the original intent, then it all goes downhill too quickly. A caregiver's boredom, exhaustion, and stress really drag you down. It would be lovely IF everyone could be civil at least. Let's give it a try! Lol

As for milk and honey, that is me, I suppose...Because as it has been drummed into my head and heart, to get through life, one MUST be positive..laugh as often as you can...Hey, try balancing cancer, a son's cancer, a granddaughter with CP, a 95 year old Mother with COPD, AND a husband with PD..and that's just this last year's problems! To face all of this, I need to be positive...Hugs, Jane

By LOHENGR1N On 2013.08.28 19:32
Wow, You know I don't get it Everyone wants to and does rant. I rant and I'm crucified because of it. I should not say anything, but many can and do come down and come down hard on me if I dare criticize. Yet they pick one thought and don't let it go! They stay on it and ignore any explanation of what I said it seems they don't want an explanation. They just don't let it go. Even when they say let it go then end with snide remarks or little add on's at the end of their post. I guess I carry the target for awhile now until they need help and Then? I'll really pee them off and help them! Just the way I am, maybe sometimes I care too deeply.

By parkinit On 2013.08.28 20:12
Jane, I believe there can be a balance of both milk and honey and raw reality. Even here on this forum. ;)

By chroop67 On 2013.08.28 23:32
Ok people! Its simple we come here to share our joys, frustrations and sorrows. Thats it. If we want advice we ask. If we want a sympathetic ear, we share. Thats it. All day long we smile, we whistle a happy tune, we set aside our own plans for the needs of the PWP and then we come here to share the un-edited. I come here for camaraderie because only you truly know how I feel. I value your insight Al but I come here for the support of my fellow caregivers.

By phoenix On 2013.08.29 00:04
Thanks Chroop67, you said it well there is nowhere else wheae I can talk about/discuss/rant about my life. I don't post often, but everytime I come here I read posts that I can totally relate to and feel good about not being alone. I hate to think that anyone feels they have to leave this forum because they have not felt supported. That's what this is all about. And Al I think it is truly amazing that you are your own caregiver after so many years with this stupid disease. Please understand that many of us are dealing with PWP who are way beyond looking after themselves. My husband cannot read anymore, let alone post on a forum. Every journey is different

By Mary556 On 2013.08.29 09:47
Being relatively new here, please forgive me if I am out of line to say something.

When I read the original message in this thread I did not take it to mean "Don't vent" but rather "Please try to vent in a way that is kind to your PWP."

Everyone here is tired and under stress, day in and day out. I don't know how some of you manage. It gives me strength and hope to read your messages and try to learn from you.

It is normal and healthy to express day-to-day frustrations. Maybe the one who has always been our sounding board, the best friend who helped us to resolve our problems, that person may be our PWP and now we need to shield them from our own burdens. We may experience grief and sometimes anger and may not know where to turn. It is a great blessing to have this safe place to express and release occasional anger towards the disease or anger towards a particular situation.

I've only been reading here for a few weeks and do not know anyone very well. One day, in a moment of total frustration, someone "ranted". In their words I felt anger toward the PWP. I felt the caregiver's stress but wanted to come to the defense of the PWP. It felt uncomfortable and upsetting to me.

I do not want to cross that line of feeling anger toward my loved one. For myself I need to work on being more calm, patient, and forgiving. It has been helping me to read the posts about personal struggles and how you all keep going in spite of them. It inspires me to witness the love and perseverence you bring to each new day.


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