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By LOHENGR1N On 2010.03.07 16:11
I'm wondering about things here on the forum. I'm wondering if anyone else is too. Jim has mentioned the posting has taken a nose dive and is trying to figure out if it is a filter to the site thing with comcast.

So here I am sitting on the porch steps wondering. I've posted on the young onset discussion site, not much going on in there. Then there is the Non-caregiver topic site I've just skimmed over the topic's and you know they really do concern caregiving even wether to get N1H1 shot. If We think about it insurance impacts caregiving greatly. Then there is the original forum, new people are coming, asking questions. I don't know maybe it's Me but this place I considered My home. Now I really don't know where to post. Going with my analogy of home, It seems like someone moved in new furniture with that shiny plastic still wrapped around it not inviting to sit on. (Kind of like the Aunt's house you visited when you were a kid and were afraid to touch or sit on anything?) You want to talk about insurance or a appearance on T.V. by someone ....... go to the kitchen. Young on set? You go to the Den. Is this the cause of low posting? I don't know, are we losing "family" because we're becoming another place where separation of Us will defeat Us? We're all in this together Folks! Do you really want to separate groups and "site" specific topic's? What is one of the hardest most mind numbing side effect of this disease? SEPARATION! Friends stopping coming by! Loss of social life for patient and caregiver/partner. You can read the posts morning the loss of friends and family, the isolation.

I've always thought that an answer to a question about pain or med's or how patients feel is better answered by a patient if they can. I mean it's a general answer as We can't speak for every patient but then the question is general also. If a specific answer is wanted ask the specific person that's all. If not answered by a patient somewhere along the line it's just guessing. But then maybe I was wrong and that information wasn't wanted? It seemed to be at the time.

There's been an on going tippy toeing around here about dementia and mentioning it. Yes it's a strong possibility 30/50%, but I've looked in every book and pamphlet I have on Parkinson's Disease and even from 25 years ago it's in them (even the Young Parkinson's Handbook) mentioned as a secondary feature of the disease. I always stress educate ourselves on Parkinson's, each facet, hopefully many won't apply but forewarned is forearmed. I don't know maybe I'm wrong to worry about our site here. Maybe it's just a lull, a spring fever type of thing. I worry about all my friends here and those who have been left and are now going about life in spite of their loss. I also worry about the health of our site, our home. I'm posting this on all the forums here as I'm interested, am I the only one worried about this and is it needless worry? Take care, best of luck and hang in there.

By karolinakitty On 2010.03.07 21:12
Well Al, I was wondering about things also. It sure has been quiet at the ol homestead. I know that in the last almost, year, i have been posting that some of our family are not here any longer, some due to the loss of their LO and some i am hoping are on an even keel for a change.
i know mine has evened out. He's got different drugs now, financial stress is llifted and we feel good about amny things.
There are some "new" things but not dramatic changes. Things we can handle. Nothing drastic and i hope it stays calm for us for awhile.
Loss and seperation, my, now thats a topic. It seems so amazing to me that people unaware of the many complications of this disease and all it involves, kind of "go away". Oh, so sad to hear that, talk to you soon, and then you don't hear from them. We are isolated just by where we live, so then you lose folks who used to come around. Then you lose folks because, it's hard for him to talk on the phone and "make sense" as he says. he loses the words and then feels stupid because of it. He shouldn't. i say, but he does. Typing gets to be an issue also. Takes so long to find the letters fingers click when they shouldn't, windows open and close, what seems to be at their will, so you get away from the boards. mine was communicating withother PDrs ona chat line, but had to stop because it got too confusing with everyone typing and tlaking at the same time.
Yes, Dementia.... it is there and in our case probably the worse part of it. Losing words, not being able to complete sentences, taking so long to talk, let's face it, People today are in too much a hurry to listen to someone try and make sense. It's even hard for me, being slightly hyper, to sit and listen to a story or a thought when there is so many other things to do. So when it comes to others i feel their pain.
Maybe it is spring fever, i know i would rather be out on the lake fishing right now but it's still a little too cool and we are looking into getting a more comfortable seat for my man on the boat. He needs something a little higher and one that can turn all the way around. So that will come too.
I hope things are going good for some fo you folk and that's why you're not around. We can always hope for the best of things.....

By lbellomy On 2010.03.07 23:10
I am here almost every day reading. I do not post real often, and mostly if I think I have a tidbit of information or have tried a med that has worked for my husband. This will be a busy month as our daughter is getting married, and we are having company. So I may miss a couple of days, but I will catch up after all have gone home. As far as how my husband is doing, I am wondering that myself. He slept almost all day but it is a rainy, gloomy, sleepy day. Hopefully that is all it is. I also read other forums and it seems like the weekends for the most part are slower. I know that is when my kids drop in so I don't always get on the computer. Just my thoughts.

By mrsmop On 2010.03.08 00:43
I'm relatively new to this forum, so I don't really know what "home" means. As caregivers, we are all different and our concerns are all different. We also learn differently. I agree that separation and isolation are huge topics, but education helps to deal with these and other topics. I'm sure that there are many sensitive and personal issues that caregivers have. I can't find any friends or family who really understand what my life with a Parkinson's spouse is about. I think people in this group really do understand and can be of great help.

By karolinakitty On 2010.03.08 08:06

You mentioned he slept all day, yet it was rainy and dreary.

We were just speaking about things like that. Where we get in the mode of "everything related to the disease".

Sometimes we, and i mean me too, might get in the mode where we "blame" everything on the disease instead of really looking that it is just everyday things. That we sometimes are so in tuned to the disease we forget that:

Everybody has a day or two they would like to and do spend in bed
everybody gets a really bad headache now and then
everybody, and sometimes. yes, mostly women, have a day when we want to bite everybody's head off
everybody has times when their stomach acts up(beans and cabbage)
everybody has things going on that makes them mood swing
everybody ahs a day when they forget things (especially under stress)
everybody has a day when they can't spell and mis type words

Now i'm not making light of any symptoms for i know in fact they are there.

Sometimes though we need to sit back and say, it's just the day it is and not relate it or look at it as if are loved one is progressing or having a bad day.

mrsmop...Home means, a place to go for solace and comfort, to feel loved and be loved..... When you are in this disease and the deeper you get into it. You can feel alone and out there by yourself. It is at these times where you can come "home". Come "home" here where people you "know" love you no matter how bad the day has been, no matter how much you want to scream or cry, that there is someone here who has been there and done that, and some of us many times. "Home" here means comfort when no one else will hear you. "Home" means a "loved one", brothers and sisters to help keep you afloat. "Home" here means that no matter how angry you get, and the awful thoughts you think, and how sometimes you want to run away from this all, there is someone here to get you through it. SOme folks need to know that. Some of us want to help those who need that. You are correct that some don't. there are those of us, like me, that are analytical and not cold, but can handle the stresses of things better than others. There are some here more knowledgable about this disease than others. Yes, there is the internet and i have found so much help there. Then there is first hand knowledge. Something the internet medical websites DON'T have. Drug companies don't tell you all there is to know, but people on these drugs and caregivers watching them KNOW first hand the effects.
It is "home" because we can come here and not be afraid that our comment may upset another, that we don't have to walk on eggshells. It's hard to tell a real family member or a dear friend. that your pdr is driving you crazy and you just want to run away from it all. They would think you were uncaring and the worse spouse in the world. However, we would think it has been a very hard time for you and whatever you say we won't judge you for there are or will be times when we feel the same.
Education is great. I'm all for it. Then there is the comfort zone. a place you can let it all hang out. This is where you can find friends and family who really understand what life with a Parkinson's spouse IS all about........

By lurkingforacure On 2010.03.08 08:45
I myself have not posted in awhile, but it's because my life is just too demanding right now. Hell, I don't even have time to read posts by others! I WANT to post, I have lots of questions, not many answers, but by the time I get the kids to bed, the kitchen cleaned up, pets fed, etc. etc., I'm wiped. My hubby is only four years into this but cannot help do anything, no give the kids a bath, no take them to the park, help with laundry, trash, pick up a birthday present, nothing. I'm it for our whole family, but married. So weird.

I would imagine that caregivers of PDers that are further along are even more exhausted and pressed for time. Our national woes do not help, either, not to get political: stress is stress no matter where it comes from and it all adds up.

This forum is still an enormous comfort, regardless of whether there are 50 posts a day or 5. I am so grateful it is here.

By annwood On 2010.03.08 08:50
I have been out of town and not able to post for the past week; however, I feel like commenting on this topic. As many of you know this site was my "home" and continues to be just that. When my husband was struggling with PD and I was the caregiver I found all of my comfort here. I have continued to post when it seesm appropriate but I share some of your same concerns.

We walk a tightrope between those who are newly diagnosed and those who are far into this disease. The former often aren't ready to acknowledge what lies ahead and perhaps it isn't fair to hit them with all of the gruesome facts at that point. We are fortunate to have some patients either posting or lurking. At times I questions how they must feel when we complain and when we present our honest opinions. I have taken the attitude that the majority of the people posting are caregivers who are struggling and who need information. From my experience this knowledge rarely comes from physicians. I believe that this is first and formost a caregiver site and my approach has been to forge ahead with sometimes ugly information.

I believe that to segregate the various groups - early onset, newly diagnosed, dementia, etc. is a form of denial. There just is no way to put a friendly face on PD. There is no cure, it does progress and caregivers do get to the end of their ropes. If an individual doesn't like the news, don't kill the messenger. We have wittnessed some pretty nasty comments now and then but we are all adults and we can shrug them off. Often the nastiness is the individual's form of denial about the disease or a caregiver's total exasperation.

I remain on this site because it was initially my only port in the storm, then it was my way to come to grips with my grief. Now it is my way to demonstrate to caregivers that you do survive this, you do go on with your life and you do get away for a week's vacation without guilt.

By hubb On 2010.03.08 10:14
I haven't posted as much as I would have liked to ...these past couple of weeks have been very demanding with new conditions arising, mainly incontinence at times which we haven't had to deal with before - so new problems which really just means that I, as caretaker, have lots more to take care of, clean up, watch out for, etc. I do take time to read all the posts because they are all interesting and you can find yourselves in most of them. You have to dedicate almost all of your time to your PD spouse and there's very little time left for yourself - sometimes I feel like parts of me are dissolving - and if I hear my name called one more time, I'll scream. But you pull yourself together and keep on going - you don't have any choice. I know I need a vacation from this but that's out of the question right now. Caretakers MUST take care of themselves or they are of use whatever to the PD patient - nice advice, but difficult to do. At least, reading the forum gives me a little outlook on lives of others and how they cope, which is a big help. Right now, the forum is my lifeline.

By Pearly4 On 2010.03.08 18:58
Just stopped by and saw the post. For those who don't know me, I lost my mother in what was termed a "sudden death" last June. She had lived with my husband and I for five very long,difficult years. She suffered all the same problems everyone else has posted about and described including, yes, the "D" word (dementia). But her death was really rather unexpected as she had to that time not experienced any cardiac problems and while probably a definite stage 4, coming close to a 5, she was strong and stubborn and did not intend to give in easily to me, let alone something like Parkinson's!

I found this site during a particularly low period - our relationship was as difficult as most of yours. Long story short, it became my refuge and a resource for friendship, cold hard fact and logic (a slap up alongside the head) when needed. I had done my research - I knew that Parkinson's wasn't a very nice disease and death by Parkinson's, particularly hard and hateful. We were relieved when she was released so suddenly and easily.

I left the site a short time ago because I believe I had reached a point in my life where I needed to go on with life, not life without Parkinson's, but rather a time when I needed to actually find out what my life is (stlll working on that, by the way!). But I regret to see that things here aren't the same -- I didn't want or need platitudes and nicey-nice answers. I wanted the cold hard honest truth and the best answers you all could give me. Nor did I want to enter into all your political discussions -- I'm glad you're all interested in politics and have another side to your lives -- mine revolved around Parkinson's caretaking and I was greatly relieved when Jim moved those "non-caregiving" discussions to another location. And I'm not sure that a separate location for those dealing with spouses with Parkinson's versus parents wtih Parkinson's or young versus whatever, or MJFF issues, would have been nearly as useful to me as simply being able to join into a discussion with people who were caregivers of Parkinson's patients - those who were suffering the same sense of panic, dismay, anger, anguish and heartbreak that I was and who were able to provide me with the strength to go on and even an occasional prayer for my family and I. One widely diverse group of people united in caregiving battles.

If others find the additional threads, lines of thoughts, etc. helpful -- I applaud the benefits you have received. But frankly, I'm glad I was here for the before not the after.

By Hattie On 2010.03.08 19:00
I seldom comment but felt I would like to step up and say how the forum has been of help to me. My husband (age 79) has had Parkinsons for about 6 years now and although there are things in our life that have changed we still lead a somewhat normal life for people our age. My husband does not want to know about Parkinsons I guess with the attitude of "what I don't know doesn't hurt me". I, on the other hand have been the one to study up and I daily read the forum and because of that I have known what to expect. For example my husband has recently begun to drool and I recognize it as just one of the many symptoms. A time the forum was most helpful was when Ann Wood posted that her husband had become addicted to contests and money schemes through the mail as a result of taking Mirapex or one of it's equivilents. Not long after that I began to see the same thing happening with my husband and immediately recognized the adiction and was able to tell the doctor and eventually get him weaned off of that medication. The doctor had not warned us and had I not read that posting I would still be sitting here wondering what happened to my wonderful husband and his no nonsense attitudes.

Something that was posted once that caught my eye was someone telling about her Parkinsons husband persuing his building hobby. That was my husband's hobby also and he had given it up when he first got the disease thinking that he would no longer be able to do it. I called Bob in to read the post with me and as a result we came to the conclusion that he had acted hastily in selling his tools and yes he could do it again. Since September when he again set up a workshop he has built some lovely furniture pieces for myself and our grandaughters and he actually seems better physically. Even his nuerologist recognized it and said "hooray for the workshop!" Our new motto off the forum is "Do you want to live every day like you are dying...or die while you're living every day?"

Just a couple of instances that make me want to say thank you to those of you who post your experiences both good and bad.

By Emma On 2010.03.09 04:58
I too have noticed that the postings have dropped off but I just assumed that it was the normal ebb and flow. Maybe not. In any case, I hope that this forum remains vital, it really is my lifeline.

As my husband's Parkinson's started to progress the things I was seeing with him, physically, mentally and emotionally were nothing like what I was reading about in my research. I was scared, confused and totally stressed out. When I found this site a huge wave of relief washed over me. I wasn't alone anymore, my husband wasn't the only one experiencing these things and I had people who knew and understood what we were going through. I now feel much more equipped to handle this and I have learned so much. The reality of Parkinson's isn't pretty. I would rather know that, I would rather be prepared for it. I am thankful to the people who have gone before, who are farther along in this than we are and those who have seen it through to the end. Knowing what may be coming tomorrow helps me make decisions today.

I think that I am a better caregiver because of this site. And I no longer beat myself up when I have a bad day or am less than perfect in my interactions with my husband. I have struggled a lot with the loss of "me" in all of this. As someone said, it feels like you are dissolving or disappearing. On this site I feel like I matter too and that has been a huge blessing. I would be lost without all of you.

This site really is a community, a home, a refuge in the storm. Thank you all for being here.

By MJ-Camano On 2010.03.10 04:35
I thank everyone for this site, it has been so helpful to me. This is so much better than any book, the real life descriptions of what others are going thru make our own personal situation so much more tolerable. It is so wonderful to know that others are going thru the same day to day living as we are. It is so hard to explain to someone what your husband is now like, as at times he can seem okay. I believe he even had the Parkinson's clinic fooled; until I finally had the courage (thru the support on this site) to write the Doctor a letter an explain what day to day life is like and how much help he needs. He was finally diagnosed with Lewy Body Dementia, and we can put a name on it besides Parkinsons. It is so hard to explain to friends or family that one minute he can be discussing sports and the next minute sees little green men or a waterfall in the living room.

So many things that have been explained on this site have described our lives, and it is so nice to know we are not alone. I may not post very often, but I read this site daily.

I also would like to let everyone know to keep trying to live life normally: My husband and I have annualy gone to Hawaii (as our daughter lives here.) We spend about 3-4 weeks each time we come. When I made our reservations about a year ago, I hadn't even thought about where he would be at this time. About 3 weeks before we were scheduled to leave, I thought I would have to place him in a nursing home and continue with the vacation without him and only come for 1 1/2 weeks,(as we had all of our children (3) and grandson coming). He was hallucinating all the time, didn't know he was in his own home, couldn't sleep the night, had problems eating, incontinent, totally disoriented, etc. He improved somewhat and we decided he would be okay and I would have alot of help once we arrived off the plane. I just have to say, we are into our 23 day vacation by 10 days and it had been so much better than expected; he did well on the plane flight (so what if his pants got a little soggy), we have had him to the beach about 4 times (stole a sturdy chair from the deck of condo), out to pizza, out for shaved ice (his favorite) twice, got his feet wet in the ocean, and today the best: our three kids rigged up a float device for him and helped him into the pool and floated around with him for at least 1/2 hour. I do believe this is the best family vacation we have ever had, and I think he is also glad he was able to come even though he is totally exhausted - we will all have such great memories. If there is a will, there is a way to get this vacation done - it has taken alot of assistance from friends and family but everyone is pitching in and we are all greatful that we can share in this experience of making this vacation great for him. Our memories will last for soooo long...

Sorry to rattle on about his for so long, but I just want everyone to know that I really appreciate this site; it is so nice to beable to share the good times and bad....


By karolinakitty On 2010.03.10 09:12
MJ ...Hooray for you!!!!! I'm so glad,despite the situation, you went ahead with your plans. So many memories indeed. Plus, you get to have a little help and give you a slight break in the caregiving.
It can mean so much to make sure you live life as "normal" as possble and you proved it right. God Bless You!!!!!!!

By Mary On 2010.03.16 16:22
I have also noticed that this site has been on the quiet side. I used to come here daily for support and advice. Since my father passed away, I come to the site to read posts and occasionally reply. It is as if this forum was my home and now I moved out but still visit. I do not know what I would have done without this forum while caring for my Dad, truly, this was my saving place. I could get meaningless responses from family and friends but never from this forum. I always got understanding and helpful suggestions, always! I cannot thank those who helped me through my caregiving journey words can express my gratitude.

It seems that there are many new people here and many old members gone but the questions, concerns, venting, etc., are always the same. I noticed that some members very patiently answer the same concerns over and over again like they are answering it for the first time. I read once in this forum that "Parkinson's Disease always wins" and that is the sad truth.

Hugs and blessings to all of you, Mary

By shakydog On 2010.03.17 00:14
It's not whether you win or lose, but how you play the game.

In the end we all lose this game, no one gets out alive

my sympathy for your loss and respect for your strength

trite sayings, offered honestly.

All we can do is continue the best we can and try to make the world a little better

By dkleinert On 2010.03.22 01:50
I love this site. I, like many of you, found it when I was so alone and lost in this awful disease. Without this site and all of you and your unselfish sharing and your vulnerability, I think I would have lost my mind - really. From this site I have gained the confidence and strength to carry on each day. All of you have helped me find resources I didn't know how to find or even knew existed (hope they won't be taken away now with the new bill that just passed), and all of you have shown me unconditional love and support for any question or concern I have had. I could never have navigated these uncharted waters without you. I hope you will always be there for me as I live to support my husband and his progressing PD.

I have been on a whirlwind "vacation" for the last 10 days so that my husband could see his mother in Texas for her 90th birthday, and I made arrangements for him to visit with his childhood buddies - all four of them are still living, and he was able to spend several days moving from one house to the other. None of them had seen him with PD. He had such a great time. I wondered how he held up with all of the changing beds and households - never on his normal schedule. We visited with our daughter and her family also. Then on our way back, because we fly with airline passes on standby, we had to spend the night in an airport - I was not sure he could survive it. But my poor husband was such a trooper. He really did have a good time, and for that I am soooo thankful. We have been home since Wed afternoon and it is now Sunday, and he has slept and rested for all of those days. He has not had the energy to exercise, get dressed or eat much - he has needed to sleep and sleep. Tonight when I arrived home from work he greeted me and said he felt much better now. He again slept and rested most of the day while I was gone. I am off for 3 days, so we will see how he does, but I notice that even before we left for Texas he was sleeping more and more.

I found the courage from this site to make sure he saw his friends, did things he wanted to do - no matter how difficult, and knew that he needed to do it before he could not. From all I have read hear, you have taught me the value of doing things now while we can. Otherwise I would not have done it or taken on the challenge of coordinating all that had to be done. Thank you for all you have taught me.

I am concerned, however, that he has lost so much weight - he is never hungry anymore. He is so fraile. But he tries, and even has a smile and can tell a joke now and then. He is much quieter than in the past, and so I know what is happening. Things are progressing.

Thank you to all of your for all you share here. Please never stop. I need you so much! Love and blessings to all of you. Donna in NC

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