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Topic Because it is safe to vent here Go to previous topic Go to next topic Go to higher level

By seawench On 2012.07.11 16:17
My husband has Parkinson's Plus - specifically MSA.

There is no cure. There isn't really any treatment other than treating the symptoms and trying to make him as comfortable as possible for as long as possible. I am not planning to bury him any time soon but I know that he has a very small window. I'm trying to eek out the best and most from what we have left and would love to have more time than what the prognosis predicts.

But I see the decline and His Dr. says she won't kid us there is a slope and we are fortunate that it is a gentle one, but it's there and I can see that the bottom of the hill is closer than I want it to be.

So what has me chapped is this. w3hen trying to explain our situation to others I get some replies that just about send me off the deep end.

"We are all dying" - Seriously??? That's supposed to make it all better? I"m sure they would feel differently if they saw the word "Terminal" in their chart. All this reply does is invalidate and minimize the horror that I face every day watching him slipping away.

"We'll just keep hoping he'll beat the odds" - We don't know what is wrong, we don't know what caused it, We don't know how to stop it or cure it, there is a known statistic regarding the prognosis so the odd are against us. The only way out of this is a miracle. Miracles are miracles because they are rare and they defy all knowledge. Not hanging all my hopes on that one.

I wish others would understand that sometimes Terminal means just exactly that and actively dying is not the same as living til someday you die.

I sorry for the harsh words today, I'm have a very hard day with him and these conversations with others just pushed me over. I grieve every day and I won't let it be diminished or invalidated.
seawench0

By jcoff012 On 2012.07.11 18:19
When I was dx with uterine cancer five years ago, everyone was sympathetic, but very few people truly understood. I think part of my problem with others was that the doctors "got" it after three surgeries and a hysterectomy...I didn't have to have chemo or rads...But, that didn't mean I didn't have it, or that it won't come back...I don't live like I am dying...I made it to the five year mark and heard, "No evidence of disease," and that was great. But for five years, it was always there...

Now, others chose to ignore the fact that I did go through a lot (tests, checkups every three months for years, the worry, the lymphedema in my leg that makes it painful, swollen, and will be with me forever), and on and on.

I tell you all of this because believe me, people who have never been through a life altering disease truly have NO idea how thoughtless and cruel they can be...I truly ignore most comments...Yes, I limp sometimes because my leg is swollen, so I don't need anyone telling me "You are lucky they got it and that's all you have to worry about." Try wearing compression hose in 100+ weather, Dummy...sorry...Or, how about, gee, you are lucky it's gone so you can take care of your husband now. Nice, sensitive comment...go from one disease to another...

I wish PD wasn't part of our lives, and yours, but as my husband says, "It is what it is." If WE are sad, imagine how the PWP feels...

Hugs to you. Hang tough. Cry if you need to. Life is both wonderful and miserable...I wish for you more wonderful times.

By lurkingforacure On 2012.07.12 23:03
I'm so sorry. I hate that so many suffer so with this disease. I can't believe how cruel, and ignorant, people can be. I've often wondered how people can be like that, surely they can't be THAT dumb.....

When you are having a particularly hard day, it may help to remember that none of us want any regrets. The other day I was so very frustrated with my husband and even though I know he can't help things, I am human and can only handle so much. I was seething inside, trying to focus on getting a million things done, when he asked me to do one more damn thing, and it was a rather huge thing. I about blew an internal gasket, but then, a weird calm came over me as I realized how absolutely horrible I would feel if I didn't do the thing he asked and he died tomorrow. I don't think I could live with myself, truly, and it just completely changed my attitude. I did as he asked and felt so at peace.

This doesn't help me deal with the clueless people out there, but it was a new tool I learned in helping cope with things at home.

By jcoff012 On 2012.07.12 23:26
Lurking, I had a similar experience the other day...in the middle of my anger, I walked over to him and said, "We've been together over 45 year, I don't want to ever tell you good-by or that I won't do something for you." He looked into my eyes and said, "I will love you til the end, even if I can't tell you. You have to know how I feel, no matter what happens."

By lurkingforacure On 2012.07.13 07:57
That brought immediate tears to my eyes. I am so happy for you that you and your husband had that moment together. Maybe PD doesn't steal quite everything from us.

By seawench On 2012.07.13 12:16
I have come up with an answer - "They" might not understand but here goes. We are living life as if we are dying, you are living life as if you will never die.

The difference is we are eeking out every drop of life that we can while others are careless with the time that they have because they have no real concept of how short it can be.

We will have no regrets and I will have plenty of precious memories to hug to my heart and comfort that I gave it my all and he had a great ride.

Thank you all for understanding and your kind words. I love that there are still moments where we can step away from the disease and affirm our love for each other. No matter what- I know that he sees me as his gift and he is truly mine.
Seawench

By parkinit On 2012.07.16 10:59
seawench -

It is difficult and many people find it hard to face reality. I recently had someone ask me about my spouse. He was doing well at the time of our visit with this gentleman. He said, "Your husband is doing quite well now, has his disease stabilized?" I replied, "No, he is just doing well right at this moment." He further inquired, "But he's doing better?" Finally (with a deep sigh), I replied, "PD is a progressive disease and frankly, right now, it is progressing for him, so no he is not getting better, but will continually get worse."

It's just that people continue to pursue and want to say everything is alright or better, when we know the naked, painful truth. I don't fool myself, but others seem to like to live that way.

By cmonge On 2012.07.16 12:21
seawench,
I completely understand what you are saying-I have resigned myself to the fact that my husband has a progressive disease, he gets worse everyday, and yes, he is going to die from it eventually. Most likely sooner than the 10-20 years some people keep telling me. I am a realist. He had DBS, can't take meds, has had several falls and I see the progression take a new leap everyday. Whether he leaves me physically or mentally altogether it is going to happen. And quite frankly, I'm ready for it. I hate it when people, even his neurologist, try to sugar coat it. That doesn't help me. What is going to help me is to deal with what is happening and prepare for what is going to happen to ease the pain when it does.

By Elly On 2012.07.21 23:39
Seawench, I understand your feelings and those of others since I am astonished at my husband's decline. Two years ago at the age of 51 my Parkinson's husband drove us to our son's college graduation. He walked all around the campus and enjoyed the festivities. All we had to worry about were the lawn chairs without arms. Today, just two years later he is struggling: using a walker, is incontinent and has slurred speech. It is at one both painful and terrifying to watch.

And I could fill a book with the ignorant comments I/we have gotten since the diagnosis. For example, a college buddy recently called my husband and said he was sorry to hear he was doing so poorly! Are you kidding me? I have to keep reminding myself that these comments are born of ignorance and insensitivity, not malice. But it does sting and occasionally shock.

I look for answers everywhere--doctors, lawyers, physical therapists, friends, family members, the internet but at the end of the day the only answer is to do my best and love my husband every day. I don't know what else to do.

By seawench On 2012.07.22 19:37
Thank you all for understanding.

Just to be a little more specific I was ranting at peole who make their responses after they have been told that he has a rapidly progressing degenertive terminal disease. In other words most folks who have MSA live approx 9-12 years after onset of symptoms. I believe that he has had this for seven years and he is following the course of the disease as described. Along with some other data that I have recieved I believe that we probably have 2-3 yrs at best before his death.

We are not in a position where he has a disease that will shorten his life someday, we have one that will end his life soon. That is what we are dealing with and why I want to chew the scenery when they say "well we are all dying."

I know that I have particularly blunt and harsh in this post, it is not how we live. We are living life to the fullest we can. I drag him everywhere and he goes all over the place in his scooter. He is helping teach sunday school (they mike him up) the kids are facinated by him. I enjoy his company and am fortunate that we are able to be together 24/7. I am storing away as many memories as I can.

Seawench


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