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Topic Life as we knew it is over... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2012.02.12 13:27

This is my first post. I apologize if this has been addressed in other posts. I read many, many of them before I posted.

My husband is 64 and has been dx with Parkinson's for over a year, but the drs. think he has had it for many years. He is very stoic (was a Marine!), and so, because we have had so many family deaths and sadness in the last five years, he was able to hide his symptoms, only rarely mentioning a twinge or small problem.

He has tremors and stoops, drools uncontrollably, fell and tore his rotator cuff, and has a blank stare...and all of this in the last three months...He takes Requip and had been on Amantadine, but nothing seems to be working well. (His Mom died of PD three years ago, so we know what is coming.)

A tad of background: in the last six years, our granddaughter was born at 2.1 pounds and almost died (has motor problems even now); MIL died of PD; FIL died of lung cancer; BIL died of a brain tumor; I got uterine cancer; and our son had testicular cancer...Years ago, we lost our oldest daughter when she was hit by a car in front of her high school on the second day of her sophomore year (she was 15); and, to top it off, my 92 year old mother came to visit at the holidays and fell off the bottom step and dislocated her she calls daily to complain and complain...

Now, as I said in my subject line...I see now that life as we knew it is now over...

On Friday, I went to my doctor for my five year cancer check up and she gave me the all clear (Hooray!), but his reaction was odd...Normally, he would be ecstatic, huggy, all smiles...all I got was a "good"...not even a hug...I was devastated...and see now that after 46 years, our lives will never be the same...I've lost my one and only rock.

I guess what I need to know...will there still be times of compassion and spontaneous love, or are we forever going to be like this? I miss him. I need him. He has been my life and my only love since 18. I cannot imagine my life without him in it...but, I hate PD and what it is doing to him. I want to shake him and say, "Are you IN there?"

The only thing that brings a twinkle to his eye is our 2 year old grandson...we watch him Monday-Friday; he is rambunctious and lively, and makes him get up and play and move, so it's good...His face when he watches him lights up and I see the man I love...I KNOW he loves me; I know in his heart he is the same person, but I am scared and need someone who has been dealing with the loss of intimacy to understand to talk about this...

Is it because the PD is progressing so quickly? Or, am I just unrealistic thinking things won't change?

Whatever it is, I am sad and lonely. But, so is he...and THAT hurts see a once vibrant, kind, adoring husband and Dad become a masklike zombie is heartbreaking.


By barb On 2012.02.12 14:59
I'm probably the last person you want to hear from since I just left the man I love but for the past year or so we spoke of nothing but Parkinson's. I know he is scared but I felt like I had no support it was all about him. He didn't mean to me me feel that way. We didn't have 46 years and traits we had in common were suddenly very different. Hopefully you will get back what you had. He is scared.

By jcoff012 On 2012.02.12 17:11
Well, that's honest! But, leaving isn't an option...he stuck by me through three surgeries and countless dr. and hospital stays, so I am not about to go anywhere. For five years, our lives have been about cancer, so now it's is like that, I guess...

As someone once said, "Life...No one gets out of it alive..."

I just am incredibly sad and know that this is such a horrible disease on us both. I want to make it easier on him and I never want him to think I cannot handle it all. I just wonder if there is any chance he and I will ever be able to have back any part of our past...just a smile and a tender look would do wonders.

I am sorry you had to leave, but I do understand the frustration and sadness. I wish you well...and hope you find peace.

By barb On 2012.02.12 18:00
Please don't misunderstand. I wasn't suggesting you leave. We didn't have a 46 year history and I was making the man I love miserable. I am saying your husband is scared. Keep talking to him. You will get what you had back. I think it is hard for them to think about anyone but themselves. It doesn't mean he doesn't love you

By LOHENGR1N On 2012.02.12 18:57
Jane, Welcome to the forum, the thing I question most is why hasn't your husband been put on or tried Carba/L-Dopa (Sinemet)? I know many Doctors try Requip and like Medications at first now days but. To me it seems reasonable to at least try the Sinemet as it is still the best drug We have to address the effects of P.D. You describe the "classic symptoms" of P.D., tremor, stooped posture, drooling and balance, the expressionless face (masking) etc. There are many medicines out there that can be tried. I can't read the future but with the right medication I wouldn't write off anything just yet there may be years of being closer and relating somewhat like you used to. You might have to get stricter with His medical support and let them know what he's taking isn't getting the job done and advocate they try a different drug. It can be something amazing when the right medication is introduced and the correct level is found so He can regain a good deal of his old self. Remember the movie awakenings? I'm not saying such a drastic change will occur but to have some normalcy back instead of both of you thinking this is it from now on is unacceptable. Others here will have more words of help for you I'm sure. Again welcome to the forum, a great group here willing to help all they can. Don't give up, don't resign yourselves to this level you're now on and please keep posting. I hope this helps. Take care, best of luck and hang in there.

By lurkingforacure On 2012.02.12 19:59
You already said you know what is coming but you only know from the perspective you had with your MIL. Your spouse having PD is way different, IMHO.

I recently had my husband tell me bluntly "I really don't care" when I was trying to tell him something about an issue at one of our kid's schools. I felt like he had stabbed me right in the gut, and was hurt beyond belief. The cold, detached way he said it, and didn't even apologize, was beyond incredible to me. I realized he just can't handle everything I have to handle and I will only be hurt again and again if I don't realize, and accept, that the man I married is changing. He doesn't want to, can't help it, and would do anything he could to keep it from happening. But there's nothing.

So just enjoy the times you have him "with you" and remember that he IS in there, and would love to come out. Accept that he will say and do things that cut you to the core, but probably doesn't even realize he is doing it. My guy is so tired all the time, he sleeps or is lying down so much of the day nowadays, it's hard to tell what is going on. I just keep things running in our household as best as I can, fight back the tears, try to keep our kids happy in spite of it all, and forge ahead. If we have a good day or a good hour or two, I grab it and savor it all I can. If there's sadness or pain I can't really handle, thank heavens we have this forum. I don't know that there's much else one can do.

By rmshea On 2012.02.12 20:39
I just want to echo what was said about Sinemet. We must have finally hit on a combination of things to get better med management--a talking alarm, and phone calling. It was just like awakenings...she is laughing, talking, smiling...we haven't seen that in ten years! She's 83 and we thought she was done for. She's very forgetful, but now acknowledges it and makes jokes about it. The right meds at the right can be the key to a much better quality of life.

By jcoff012 On 2012.02.13 00:46
Part of my problem with my husband is that his Mom had PD for 22 years and was on sinemet most of that time. He saw her fade and said he doesn't want to take it til he HAS to.

I agree that he doesn't even know he is hurtful; I TELL him he is, but he will say, "I DIDN'T say/or do that!" No winning...

There is a commercial right now for Hallmark that says, "Tell me you will always be there for me." He said, "If ONLY I could, Jane..." So, he is aware things are bad, just cannot do anything about it.

No one said anything, but tonight, my daughter and her husband and the little guy made us dinner and homemade scratch cupcakes...most of the time, I would have taken one into the living room TO him. But, this time I said, "Come out and join us for a cupcake." He struggled, but he got up and sat at the kitchen table...later, my daughter said, "Mom, I would have taken it in to Dad." I told her, "Normally I would have, but now, he NEEDS to know he is still able to move around and come out on his own to join us." Think that was ok??

Have a good evening...I am tired...watching him around the little guy is great, but I see that the extra commotion bothers him more and more...

By karolinakitty On 2012.02.13 10:48
First I would like to welcome you to the forum....
More recently I have been in the company of more Parkie's than I have in our first four years of this disease. I am a caregiver and while I researched everything I could about PD, so I could aide in this terrible affliction, all my research couldn't put into me the light that not only my honey has but many other parkie's out there.

There are those who, when told, go through the typical stages of grief, move on and live a full life....full in the sense of quality. They enjoy every minute of the life they have left, no matter how bad it may be.

I've been wanting to post a link, but, this being a caregivers site I held back a little but am going to do it now.....

For those who think I am too positive and I need everyone to think my way, I am not the only one trying to spread the "joy" of Parkinson's. I say "joy" because there are some out there who live with this disease in a humorous way and really try to pass it on to others.
One is Bev Ribaudo....she has the worse singing voice you have ever heard, but, sings her heart out about parkinson's. I think if some of your PDers would listen to her songs and read her might help them overcome the stage of grief that they never left.....This is what I believe has happened to a lot of parkie's out there...they went into one stage of grief and never left, never moved forward. The oh poor me, or the I'm dying and so on....they stayed there...they couldn't pass that threshold of moving on. Some of the Parkies I have seen lately, have moved on, they have dealt with the bad and now are looking for the good in life, forgetting, if just for a minute the death sentence they have been handed.
I remember "lurking" when you first came on, how your husband didn't even tell his own family, that your children didn't know....he never passed the denial stage...he stayed in that part a long time. Now he is in what I see as somewhere between 3 and 4 bargaining and loneliness....the I don't care's and the not wanting to join in's hard to get past that and really take hold of life...If they can then they can start that uphill turn..

Some get there quicker than others...some just stay on and just "hang in" without hanging on.
I recently met a former Marine who was just diagnosed a year ago....the man is so full of pride in himself, all he wants is for no one to see him tremor. Straight up I told him forget won't ever will tremor and others will see will walk like a drunk and everyone will accuse can't walk into a bar and pick up any lady anymore...that is all can still live and live a full just have to turn around and face it.....head on.....grab it by the balls and say I'm living...not dying....

It has to be their attitude and how they look at it... they really need, in my opinion to see others with the same affliction, having themselves a ball and enjoying life in order to move forward themselves...

There is a video up for the awards at the Neuro film festival, it is on MSA (multiple system atrophy) a PD plus disease....It is a heart wrenching video as this daughter filmed her mother over 2 years as the disease overtook and killed her....It's hard to watch without tears running down your face....especially for those of us dealing with PD and PD plus diseases as it shows graphically how our loved one will probably go. However, the joy behind the scenes was that up until she was bed ridden, she enjoyed her life knowing full well what the end would bring...
With all the deaths and near deaths that your husband faced over the last few years..he is stuck...stuck grieving for those who have passed and he now grieves for himself and you, knowing what you will face. He is turning you off so he can be in that grief and not see past it. Not necessarily that he WANTS to be there, he just doesn't know how to get passed it.....

Here is a link for one of Bev's song:

here a link to her blog:

Maybe if they can see a little humor in it. it might just help!!!

p.s. we are caregivers, part of caregiving is helping our loved one get past things...that is why I decided to post this....

By mylove On 2012.02.13 13:00
KK, I think this is one of the best, most insightful posts you've ever submitted, and it really makes me stop and think.

By Lynnie2 On 2012.02.13 14:07
I know with my husband being diagnosed 4 years ago at age 59 was a shock, but it could be worse. His biggest challenge is fatigue and stiffness and doesn't have the same strength. He doesn't do the exercises he should but I can't force him. He does do Wii Sports and walks in the good weather and we are going to have a vacation in the sun so he'll get in some golfing.
His progression is slow thank goodess. The advice to start takng Sinemet is also my advice. If he has stiffness it should help.
You've been through more things than most people and that must be hard on you too. If you can find a support group in your town, it might help.
Just hang in there and know that your aren't alone.

By jcoff012 On 2012.02.13 14:13
Wow, a powerful post. Thank you. We realize things are changing and that's sad to us. Life is in some ways better and some ways worse; but, as you say, we have to learn to deal with it. Would you understand if I told you that just by posting, I feel infinitely better? I think I was at the lowest point in five years, and afraid of what my dr. MIGHT find; now that I am fine, I agree...time to get him going again...

My doctor put it succinctly: We all grieve in different ways and in our own time we come to face reality. My husband can now focus on himself and face life AS IT IS, and not grieve for what it WAS...

I guess what I am saying is, it's time to refocus and take steps to make it better...for both of us...

Life goes on, with or without us...and it's time for us to make our lives as happy as possible. One good thing from all of good news has helped our son accept his own cancer better; he scheduled his five year marker exam on Friday! I think he was encouraged by my good results! Hooray!!

Thank you all, KK, and everyone else, for posting...We are not as positive about PD as you, but we will get there!

Love you all, Jane

By sunshine On 2012.02.13 14:16
Dear KarolinaKitty
Thank you from the bottom of my heart. You are such a beautiful gift to all of us. Your insights and knowledge are invaluable to me as are others insights too. I feel so blessed to have come across the forum. Some days life is full of light other days the clouds cover and it is such a blessing to be able to search here for hope, inspiration, hugs, knowledge and caring support. Thank you KK very much for your post and all of the accompanying posts that have helped so much.
Sunshine :)

By parkinit On 2012.02.15 16:55
KK -

I ADORE Bev! She is a light, isn't she? I hope others take the opportunity to visit her site.

PD does effect people differently. People go into depression.

Can I relate to other posters? Yes. My spouse sent me an e-mail for Valentine's Day. I had to laugh to myself. We have choices - laugh or cry. When I want him to express himself, he doesn't do this well. I've come to accept this, and YES, YES, YES - this forum is a wonderful support system.

What keeps me and my guy going is that we are not sitting around waiting for PD to attack us, we are attacking PD, by researching, researching, trying new things, continuing to have hope. We will continue to do this until he takes his last breath. That keeps us positive and keeps us going. We are constantly telling one another "Read this," or "What do you think about this?" Yes, our world seems to evolve around PD most days, but many days not.

By chroop67 On 2012.02.15 22:05
You and I need to agree to disagree. You pop-up all over this forum and share your info like its gospel. We all research and have obtained volumes of info, that doesn't help with the day to day. Too positive, ummm well lets see.
When I read that your PD'er is only 4 years diagnosed it drastically backed up my opinion. Its good you have been an inspiration to some but wait until you are 8years 10years or 15 years into this wretched disease.
You and your PD'er have been hard on many who have struggled with care-giving.
My mom did much through the first few years of diagnosis but now into her 14th year and everyday a struggle and dementia stealing her ability to reason, being positive isn't even a factor, this disease has stolen that choice away from her.
YAY for you and trying to encourage others but be careful with your words as you may make some feel as though they are failing as caregivers.

By BOCareGiver On 2012.02.16 01:25
chroop67, I just wanted to concur with much of what you are saying. My wife was a relatively early-onset PD'r (in her mid 40's), and in the early years of the disease was very proactive in seeking out and working with her neurologist in coming up with drug regimens to control the disease. She led an active life, pursuing interests in several areas while managing the care for her elderly parents, and holding our family together.

But at no time did she ever view PD as a "blessing" or a "joy". She dealt with it as best she could, knowing always that it would likely in the end destroy her life completely.

Now we are 20 years into the disease, the meds really don't work well any longer (plus she has strong reactions to them), she is experiencing serious dementia, and other disabilities related to PD, and as you put it, "everyday a struggle and dementia stealing her ability to reason, being positive isn't even a factor, this disease has stolen that choice away from her."

I'm not knocking Karolina or anyone else who is a caregiver or a PD'r, I'm just supporting your view that we all walk down different paths with this disease, some with better outcomes than others. Encouraging is good, blanket statements that ignore reality, not so good.

By mylove On 2012.02.16 09:35
In KK's defense, you're taking her words out of context. I understand that you guys have to agree to disagree, and don't see from the same perspective, and that's fine. I just feel like I have to correct a couple of statements.

Her spouse may be only a few years into actual diagnosis, but he's a "Plus". It's not like they're out there doing rock climbing or skydiving because he's still in his drug honeymoon. If you surfed back through her posts from the past year or so you'd see that he's had several episodes over the last year where they were down to the point where the doctors told the family "Hey, say your goodbyes now - this is probably it." He too has multiple health problems, and I know personally that they struggle every single day with the challenges of actual living. To say that she doesn't know what it's actually like living in the trenches is a misstatement and a disservice to them. Just for the record.

Secondly, I interact with both of them off of this board. I hear their day to day struggles. KK's spouse, in particular, is pretty eloquent, and like Lohengrin, doesn't pull any punches about describing the nitty gritty reality of living with PD for the rest of us. I don't live near them, but I see his posts at 2 and 3 a.m. when he's in so much pain he can't sleep. I see the videos he's taped for his friends and family (which includes their "PD family" that they've reached out to all over the world) showing how it really is from the inside. I compare where he is to where my husband is (mine is where you describe - still working, still doing pretty well on the meds and not fully disabled yet, knock on wood), and feel thankful that we're not there yet. I guess the thing that really impresses me is that even when he's posting at 3 a.m. and in so much pain that he can't sleep, there are four sentences about how much that sucks and the last one is the observation that he's really grateful to be alive, and that at least the sunrise looks beautiful at that time of the morning and he got a chance to see it. I don't think I ever see him fail to mention one without the other.

I don't think I could be as graceful as KK's spouse is under the circumstances. If I were as sick I'd want to crawl into bed and be taken care of 24/7, and I'm pretty sure I'd be hard pressed to be thankful for anything. So it really inspires me personally that he's so vested in life, despite these rotten cards he's gotten dealt. I know it isn't for everyone, and he's a pretty special case, and that's fine, but it really really does impress me.

Nobody sets out in life with the goal of dying. It has to happen, but we all believe it's sometime in the indefinite (and very far away!) future. For these guys, that thought is never miles and miles away. It's something that they have to come to terms with, especially as they get sicker and lose more and more of their previous abilities. Everyone copes with that in their own way, and all are equally valid. What I see from KK's husband, and some of the other people that KK mentions, is the desire to hold on to every piece of life as long as they possibly can, like a piece of fruit whose juices they draw every drop of for as long as they can before the empty husk must be thrown away. These guys aren't just chugging the nectar - they're trying to savor every drop because they know that there isn't much left. Are they always sunshiney and grateful? Not every day, for sure. None of us are. But I applaud the desire to seize the day. I hope that they never lose that. Please don't knock that process or make light of it. It has nothing to do with what stage of the game it is or how bad off they are. PD is a losing game all the way around, and we're not in competition with each other. Hopefully we do our best to encourage one another.

Finally, KK's quote about the "joy" of PD was irony/sarcasm, not literal. It's not that PD itself is the blessing, it's the observation that hard times can really illuminate what our real blessings are. Colors always look brighter against the blackest background. I know that you guys have had previous wrangles in previous posts, but her post on this particular thread wasn't preachy or blanket, just her own observations of themselves and people in her own network. Personally, I like the stories of people who are giving the finger to PD and to Death, but others may not. That's okay. Just take it for what it's worth and leave what doesn't work for you.

By karolinakitty On 2012.02.16 11:11
Thank you mylove...from the bottom of my heart...

Yes we've only been into this about 4 years. But when given a life expectancy of 3-5 years with a PD plus disease...well...we've beaten 3 and are hoping for more than 5...

If you look at the post I made to seawench you would understand....

I said in there i wish he had just plain PD...maybe our lives together would be longer....and I didn't want to offend someone by saying's selfish of me and not fair to those who have regular PD and like Al live over 25 years with it.

we can agree to problem there..none at all..

But when you cut to the crist of it saying I don't know what its like to have this disease so long...well..I don't, but what I do know is we struggle with this disease x25

A PD plus disease is just can do all the research you want.. you can comb through scores and scores of books but until you know what it entails don't you dare so I have no right to blanket it or know what I am talking about....many of your PDers have gone years without many hard core mylove said Three times in 2011 we were told that was it....when your blood pressure is 250/150 and stays there and your blood sugar stays in the 600 range then stays there...when you get a staph then later get pneumonia....yeah I've had my fill of PD in just 4 short years... I wish you would watch that movie on MSA.. in just four short years this woman went from in 2 years not being able to get out of suffering 2 years bedridden, not able to eat but a liquid diet not being able to see because her eye lids just shut..and this is still to come for us...his eyelids are shutting already and his vision is not good... he struggles to write and type but he feels he must to encourage others...and to keep PD at a distance...

I don't care how long someone has had PD.. each and every person is different and if you have PD plus your life expectancy ranges depending on the disease from 3-5, 7-9 and 9-12....unlike regular PD and YOPD as 25 years or more...PD plus diseases are sped up ..period....

and he does have dementia so I know all about that too....

my name is not Matthew, Mark Luke or John..what I write isn't gospel but what I write is and comes from my heart and my hearts desire to help others....

By karolinakitty On 2012.02.16 12:07
just a ps....

If only I could have 8, 10 or more just don't get it....

By seawench On 2012.02.16 13:32
It dosen't matter what type or how long -it sucks. Some of us have it harder and more horrific than others, we all have different abilities and levels of coping.
I find there are absolutely horrible things that I won't blink an a eyelash at and other seeming small things that have me freaking out - it dosen't make sense to me why that is.
There are a lot of variables - each person's progression is different
Some have incredible inner stamina, charachter, personalities, resources, faiths, prior life experiences. The hero's are the ones that know what they can do and do it and don't when they know it is too harmful to continue - it's not a failure this isn't a test. If we can prop each other up to make it through that is what we are here to do. Encourage.

My guy has been seriously ill for 16 yrs with other things - the PD Plus didn't show it's face until 3 yrs ago by that time he was seriously disabled. He had a rare tumor that robbed us of any honeymoon period we may have had with meds so when we got the dx he was already 5 to six years into what will probably be a 9-10 yr journey. Do the math his time is short and he is progressing rapidly
The last 16 yrs have been brutal - especially with 2 diseases that no one could sort out (they couldn't figure out what it was). It's freakin hard and I grieve everyday. It's like the title to this post - life will never be the same. Until 3 yrs ago we had hope that it would be figured out and fixed and we could rebuild our life - but now.... we cope.

I could play the violins and park myself in victim mode (And I'm not saying anyone here is it's just an illustration and we all know people who do) - but I don't, I can't I have an effervesent personality- I'm a cheerleader, I can't sit down for long. I will cheer you all on and push to see the sunshine - that's who I am but please never doubt that I don't know the darkside, I do and I will never intentionally put down any one who struggles. I want to wrap my arms around you and comfort you - sometimes we just need someone to say it's horrible, we need to be affirmed that what we are facing is one of the most taxing, destructive, horrific thing we will ever face and sometimes (most times?) we just want to be done.

There are websites that I visited when we first started our PD journey and they were so horrible that I wept and had great fear about what was to come. It was too much for me. We knew so little and he was advanced and I was thinking 20yrs???? OMB! (Oh My Broccoli) I can't do it! But I found this forum and you all don't hide the ugly but you share the sucesses, the solutions and provide encouragement - Thank you. The things that I have learned here have made a huge difference in our lives and made us able to do things we thought we would never do again

So ...If it sucks- it sucks, let us support you. If you have sucess, let us cheer you on. What ever you learn please share, you'll never know how much it may help some one else.

Good luck to you all

By daisy On 2012.02.16 13:39
Hi. I don't post very often but do read this site everyday and I feel that the support and encouragement offered is fantastic. This pernicious disease has stolen something precious from each and every one of us and it's great that some of us PDers and caregivers alike can be upbeat at all, given the circumstances.
Every case is so different, no one can compare or contradict.. My own PDer my beloved hubbie was diagnosed at 46 only 4 years ago and has been to hell and back with VERY aggressive parkinsons. He is at the end as far as treatment is concerned and never had any drug honeymoon. He hasn't been able to work for over 3 years and I am his only caregiver. I won't go into his daily routine- ya'll know the problems. On top of that I try (& fail) to juggle fulltime work and bringing up a young family who have never had a daddy able to play, cycle, swim or help with homework. I feel like a sgl mom all the time. Personally, this disease has robbed us of the best time of our lives, our security and any real future.
I envy those who have been lucky enough to have any kind of life after a parkinsons DX we haven't been that lucky, but I wish them well. I think this is a great forum so please do away with the petty wrangling and back biting! We're all in this together!

By mylove On 2012.02.16 14:39

Please hang in here with us. This happens occasionally here; it's a raw place, and so emotions fire hot sometimes. The bottom line is that we are all grieving, in our ways, and it takes so many different forms.

My heart goes out to you. I understand your words so very clearly. Right now on another post I talked about our latest challenge, my husband's pending stepdown from working full time, and all that means to us. He is grieving yet another loss in his life, and I am struggling to figure out what that means for us and how to rearrange our lives to accomodate yet another challenge. Grief is a big part of things right now. Sometimes we can push it off, and I am very thankful for that.

Seawench and Daisy, I second your thoughts. I feel for all of you, wherever you are in your journeys. This forum is a rock to cling to when the seas are rough, and man - sometimes I need that. Here's my short thought - PD is ugly. Let's us not be. Thanks to all of you for the insights that many times I'm too far in to see, and the support that keeps me going.

By LindaRhea On 2012.02.25 00:38
Thanks to all of you. I just started with this site and feel better already- or at least not so alone.

My husband (72 and married 48 years) refuses to see a doctor or to take any type of medication. But he constantly tries different herbal remedies, although I haven't seen much improvement. I'm supposed to support anything he does because it's his body and he can take care of himself. In the meantime, I'm still trying to be a full time care giver (he has had increasing symptoms and difficulties for 12 years)

He has lost so much because of this disease, but I feel that I've given up more than he has. He CAN'T do things, but do I have to quit doing the things I want to do? Sounds selfish, but it hurts to see so much of life just rushing past me!

By moonswife On 2012.02.25 04:06
I see you found our lifeline. Without the middle of another scary night....most of us would just silently sob in frustration.

The incredible posters on this sight teach, support, suggest, console and comfort each other. Occasionally they snipe. I have been just a lurker, not a poster for a long time, but saw two people that have a lot of knowledge to share have such a strong difference of opinions it was unsettling to many of us.

Listen to these folks. Read all you can. And, DO NOT HESITATE to post questions. I try to follow every thread, because I am surprised weekly at what I have learned.

By jcoff012 On 2012.02.25 12:48
Mylove, and others, I have to say, I was a little put off by some of the earlier posts. However, I feel strongly that this IS the place to vent and express opinions. I came here because *I* need to vent, to understand, but I AM strong and can ultimately make my own decisions.

While I respect the words of advice and comfort and appreciate others' sentiments, no one opinion should ever be considered the *best* and only one to follow. I, too, wish to remain positive, but, I do *know* this disease; we lived with it in my MIL for 22 years. I was her caregiver many, many times. We know what is coming.

I just was extremely down and needed to say it out loud. I DO value all of the comments and will be on regularly...

It IS the last test result...I am NOT in cancer IS gone!!!


By LOHENGR1N On 2012.02.25 15:45
Jane, Congratulations on Your wonderful news!

By karolinakitty On 2012.02.25 21:27
Congrats glad you got such great news with all you are dealing with....Totally awesome!!!!!

By Reflection On 2012.02.26 10:02
Jane - delighted to hear your cancer is gone. Such a relief.

By parkinit On 2012.02.26 11:46
Lovin' to heard the good news, Jane. This post has gone a lot of different directions, but am encouraged by the positive ending! Hugs,

By jcoff012 On 2012.02.26 14:14
Last evening was pretty awful with the PD; it was one of those 'nothing I say or do is right' nights. So, I have learned to not fight; I made myself a tuna sandwich at six, folded a load of clothes, then came upstairs, by myself, and watched, "Scent of a Woman", one of my all time favorite movies. Not a big Pacino fan, but LOVED him in this! Went to sleep shortly after...

This morning, got up, got a shower, then walked over to him, hugged him and asked if he felt like going out for breakfast...we did, he didn't eat much, but he made the effort. Our favorite waitress made him laugh and told him he needs to cherish a wife like me...lolol

So, today is better! Jane

By parkinit On 2012.03.01 10:27
Good job, Jane! Sometimes we do have to step back for them to appreciate us, don't we? I do believe it is easy to step into the mode of being taken for granted.

Take care,

By ateacher On 2012.03.04 09:14
Greetings All,
I just discovered this site and find it most helpful and honest! I have been keeping a journal, which has been helpful to me when I need to express my fears, concerns, joys and frustrations. Somehow putting things into words on a page helps, as one of you also said.
My husband was diagnosed at age 61 and a half, which was two and a half years ago. We have been able to still do things, but at a much slower pace. Because we were always so busy and active and loved to travel and fill each day as much as possible, this has been quite a change. Also, patience is my absolutely least virtue, so this has been a challenge.
We are fortunate that our sons are grown and have good jobs and fantastic spouses, so they are on their way successfully. Also, my husband has a great sense of humour, which helps us both. He does take citalopran for anxiety, which I think also helps with possible depression. He also takes dopamine, which is probably helping, although we do not see quite how.
One of the things that is most troubling for me, that one of you posted, too, is that he sleeps quite a lot of the time. Given our former lifestyle, this is frustrating to me. But on Valentine's Day, he wrote (not in his former excellent penmanship but clearly understandably), "I may sleep a lot, but I always dream of you!" Believe me, that made my day, my week!
I know I will return to this forum from time to time, as it does help to read the experiences and opinions and suggestions of others.
Meanwhile, we, too, live as much as we can in the good moments and savor all that we can still do!

By jcoff012 On 2012.03.17 19:44
Happy St. Patrick's Day! We decided to go out for breakfast, since we don't have our grandson on the, I hollered up the stairs, "Don't forget your green; after all, you ARE Irish!" Well, that was probably a mistake, because after ten minutes (he WAS close to being ready), I came back upstairs, only to find him struggling with a green pullover shirt. He didn't see me, I just backed out of the room and went back down and waited...He came down and we went out, without me saying anything. I told him he looked handsome and our waitress commented on his "green", so I'm glad I hadn't made an issue of how long it was taking...

How do you handle all of these subtle changes? Things no one else notices; but are major efforts for him...and, me! Do you offer to help? Or is that met with "I can DO it!"

My mother thinks I am too hard on him, asking him to keep doing things that zap his energy...Like this morning, I "let" him go to Home Depot and Costco by himself...He wanted to take his time and look at tools...he was gone three hours!! I was beginning to get worried, but he still drives, and I think sometimes, like me, he wants to be alone...he's asleep downstairs...said, "Jane, you would have gone nuts, as slow as I am..." and, I think he's right...I used the time to catch up with relatives, file paperwork, and clean the house...none of which can be easily done with a two year old around all the time!

Hope everyone is well and doing well...
Hugs all around. Jane

BTW, I DO understand everyone's sides on the PD issues; how we personally travel down this road is up to each of us. Jane

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