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#61 Redoubt

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Posted 15 March 2012 - 09:09 PM

Thank you, I appreciate the welcome :)

I have an elderly mother (88) who has shown signs of PD for a few years but the symptoms have really moved in since December when she suffered blood clots in her lungs. Though she has not been officially diagnosed, she has a majority of those symptoms now with the 'freezing' being the latest and most troubling in its effect.
I foresee visiting here with many questions in the near future. I am grateful to have found this website.

Thanks again,

Mike (aka Redoubt)

#62 linda dailey

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Posted 03 April 2012 - 06:00 PM

I am really glad I found this site and this forum. What I have read so far exactly expresses my feelings. I hope I can connect with other's who have loved one's who too have been recently diagnoised. This is a new journey and much to learn. I thank God each and every day that my husband is with me and would be so greatful to meet other's here.Blessings, Linda Dailey

#63 Om mani padme hum

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Posted 05 April 2012 - 03:03 PM

My husband is called Peter and was diagnosed with PD ten years ago, so I don't feel like a Newbie. There must be a better word. It sounds a bit exciting, like joining a new school or an Arctic adventure and it really isn't. Raw or Virgin comes closer.

Peter's doctor told me he had PD symptoms and that I must break the news to him. I spent the weekend alone, researching the disease and in tears. How on earth was I going to tell a man who flew planes, sailed boats and raced cars that everything he loved doing most was going to have to stop and then eventually he'd die? I phoned his doctor on Monday and told him to tell him himself because I couldn't.

That was a long time ago. Since then P's had operations on his feel and a knee replacement. Before PD started to affect the whole of his body he treated it like a car, replacing the parts that stopped working. Now he's given up everything he loves doing, except making love. He's a different man from the extraordinary person I married, but I still love him. The first thing an American girlfriend asked me when I told her what was wrong with him was; 'Are you going to leave him?' It never occurred to me, but perhaps that's what happens, many people are dumped by partners who don't want to stay when the party's over.

I'm unsure how writing about this helps, connecting with people I'll never meet seems a bit pointless since everyone's experience of PD is different, alternative therapies have little substantial to offer and there's no cure. I wonder whether levels of Dopamine could be checked annually after the age of 50 in people with a family history of PD, perhaps falling Dopamine levels could be kept topped up, it would be worth a study if measurement is possible, by the time the symptoms appear it's too late.

For many years, until P's symptoms became obvious, he didn't want anyone to know, but I don't know which is worse. It makes me very very sad talking or writing about it, it's like having to grip a bunch of potent stinging nettles tightly without crying.

It's extraordinary that there isn't a cure or better medication. DBS is horribly invasive. We try to establish the optimum dose of Sinemet, then P's symptoms get worse and we have to readjust which takes weeks. The disease (it isn't really a disease is it) is always one step ahead. The batteries in his brain that supplied dopamine have simply run out of juice too early.

For him the biggest battle of his life is to stay positive. Forget about winning the war. P has always sorted out problems using exceptional powers of lateral thinking. sometimes it would take him a few days but the solution was always clever and unexpected. He frequently helped other people through seemingly insurmountable difficulties. The Gods probably picked up on this and decided to give him a problem he couldn't possibly solve.

Perhaps what I dread most is that P might decide the solution lies in a one way plane trip to the Dignitas clinic in Zurich. That would kill me too, it would mean I'd failed to make the end of his life happy.

#64 Luthersfaith

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Posted 06 April 2012 - 02:20 PM

Perhaps what I dread most is that P might decide the solution lies in a one way plane trip to the Dignitas clinic in Zurich. That would kill me too, it would mean I'd failed to make the end of his life happy.


Hi, It is very hard. But maybe the hard things in life are here to teach us something.

Peter sounds like an interesting fellow and very intelligent. Then why the suicide palace? PD is not a death sentence it just helps to put death on a, sort of, time frame. 10 out of 10 people die. Its not a matter of if, but when. I do not mean to be preachy, but death and Jesus have a lot in common. Have you ever read the 4 gospels in the Bible? Death does not have to be so nasty... oh it is... but the sting of death can be taken away. If your open, you can take a look.

I think you are a wonderful wife. You have chosen to stand by your husband, through all the changes PD have brought to his life. I'm the one with PD, and I am changing and I don't even know it until my wife ( who also is wonderful ) tells me. On behalf of all of us here with PD, we say THANK YOU for staying with your husband.

In no way have you failed him... even if he makes a bad choice in the future.

God bless you.

Edited by Luthersfaith, 07 April 2012 - 07:37 AM.

"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#65 grandma2

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Posted 09 April 2012 - 07:59 AM

I always feel sad when it comes to welcoming someone to this forum, because it means that person has a loved one who has PD. You - collectively - have had your lives turned upside down, and we understand the cries of "WHY?" and "How will I deal with this?" and especially "What happened to the future???"


My husband, now 65, was diagnosed just after his 63rd birthday, and we realize now that he had been exhibiting symptoms for at least 2 yrs before that. I guess, in a way, we were lucky, because at the time of his diagnosis, my husband had just been offered a job transfer back to the Seattle area from Kansas. So we didn't have too much time to concentrate on the news; we were wrapped up in all the preparations for the move. We bought a few books about PD, found the various websites, but were not really able to absorb it all. He made the move to Washington while I stayed in Kansas to finish prepping the house to be put on the market. I found this forum in Feb. '06 and started firing questions left and right. After a bit I calmed down a little and was able to absorb all that I'd learned.


The men and women here are saints - no matter what they deal with at home, they are always ready to answer questions, offer advice/insight/experience, and most of all, to hug and support you. This group is mainly women, but there are also a number of men caring for their wives, and our guiding light is Jim K, who has Parkinson's. He shares his own experiences, gives us the opportunity to see through the window, as it were, and see how it feels inside, and his greatest gift is that he encourages us all. A rare and unique gentleman and our dear friend.


PD is a tough foe that doesn't fight fair; there is no timetable that helps you understand just where you are relative to the overall scheme of things. No two people with PD will deal with the same symptoms, much less in the same order, nor will their meds 'cocktail' be the same as the next person. This is why it is very frequently referred to as a 'designer disease'. One size does NOT fit all.


Ask any question that comes to mind - there is no such thing as a taboo subject. No matter what your problem, someone here has already dealt with the same thing, or something very very similar. We are our own community.


Before I close out, I thought it would be wise to share some of our shortcuts (you know, the secret handshake?!!?). We use some 'shorthand' - definitions follow. If I forget anything, I know that members of the forum will fill in the blanks...


PD - Parkinson's Disease


PWP - Person With Parkinson's (also known as "Parkie")


CG - Caregiver


DH - Dear Husband ... DW - Dear Wife


MIL/FIL/DIL/SIL - Mother/Father/Daughter/Son-in-Law etc...


MDS – Motion Disorder Specialist (a Neurologist who has done

additional work and specializes in illnesses of this sort).


DBS – Deep Brain Stimulation – a surgery in which electrodes are implanted in the brain to reduce the symptoms of PD. We have more than a few here whose PWP’s have had this procedure done, and can advise, share wisdom and experience. For additional information on this, check out the “Ask the Dr” or the "Ask the Surgeon" forums, as there are numerous threads on this subject.


Each of us here is in a different place on the PD roadway - many have PWP's that are still in early stage, others are in all of the various later stages, and a few have lost their PWP's but remain here to help. Member's backgrounds are very diverse, but there are more than a few who have medical backgrounds and are particularly helpful. We are spread all over the globe, with members in a number of countries beyond the North American shores. PD inevitably infiltrates our entire life, so in addition to specific PD issues, we share what is going on in our lives. In this forum you will find many others who know how hard it is to be a caregiver, and understand. You will quickly find that you are not alone, and that there are people out there that can not only relate, but help! Finally, we share some humor as well, for 'phunnies' are great medicine, and as often as not, the only thing we will find to laugh about in any given day.


Welcome to the warmest and most nurturing support group you could ever hope to find.


Hugs, Sharon



#66 Om mani padme hum

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Posted 23 April 2012 - 10:33 AM

Hi, It is very hard. But maybe the hard things in life are here to teach us something.

Peter sounds like an interesting fellow and very intelligent. Then why the suicide palace? PD is not a death sentence it just helps to put death on a, sort of, time frame. 10 out of 10 people die. Its not a matter of if, but when. I do not mean to be preachy, but death and Jesus have a lot in common. Have you ever read the 4 gospels in the Bible? Death does not have to be so nasty... oh it is... but the sting of death can be taken away. If your open, you can take a look.

I think you are a wonderful wife. You have chosen to stand by your husband, through all the changes PD have brought to his life. I'm the one with PD, and I am changing and I don't even know it until my wife ( who also is wonderful ) tells me. On behalf of all of us here with PD, we say THANK YOU for staying with your husband.

In no way have you failed him... even if he makes a bad choice in the future.

God bless you.


Thank you for this kind message. What I would like more than anything is to know how not to feel sad all the time. I don't show it, but it's very difficult being a witness to what's happening to my husband. Yesterday as we left a lunch party a woman told P what blue eyes he had as we were saying goodbye, I know she meant it sweetly, but it was so patronising to a man who used to have so many more things going for him than the colour of his eyes.

#67 cleblanc

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Posted 04 July 2012 - 06:41 AM

My DH was just diagnosed at the age of 48 with PD. He has chosen to deal with it by just living day to day and rolling with the punches. "Whatever is to come will come" is what he likes to say. I, on the other hand, am reading everythig I can find about PD because I want to be prepared and to be educated on the topic.
He first noted a tremor of the left hand involving only his thumb and first finger. This started a few weeks after he was stung about 25 times by a swarm of wasps. He had a severe allergic reaction and had to go to the hospital. He never mention the tremor to me. Instead he just kept it hidden and hoped it would go away. I noticed it one day when his hand was at rest and he was watching TV. He dismissed if but I told him he better make an apt with the Dr and get it checked out. He put it off and never made the appointment so I went forward and did it for him.
Fast forward to today....he has seen a Movement Disorders MD, had a DAT scan and been officially diagnosed with PD. He was started on carbidopa-levadopa. There is no improvement yet after 3 weeks of medication. His left arm barely swings when walking and the tremor is noticeable in his left arm now.
I am here because I want to find out as much as I can and I know you have all been through it and can offer pearls of wisdom and support. We are not wealthy and we both have to work full-time currently. What is going to happen when he can no longer work? He justs tells me to live for today and stop getting worked up about the future but I want to be prepared.

#68 Golden01

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Posted 07 July 2012 - 10:09 AM

cleblanc - What a lot you've been through. My husband was diagonosed seven years ago but had symptoms for several years before then. I've found that he and I have sometimes moved ahead and behind each other in being ready to deal with PD, especially in looking at the "what might be ahead". One of the things that was hardest for me was getting over being mad that our finanical future was not going to be what we'd planned (and then the economy took a downtown too!). I never was mad at him, just our situation. Once I got over being mad (it took a long time), we could move ahead with figuring things out. My husband left work for fulltime disability due to the PD about two months ago at age 59. Here's some of the things I think we've learned were important:
  • Get rid of any debt if you have any. We chose to carry debt for college expenses (and we'd make that decision again but would go about it a little differently). That debt has made the move to disability a little more challenging.
  • Check out ALL the details on any disability coverage he has through work or any private plans you might have taken out in the past. We thought we'd done that and we'd added up a small private plan, what he'd get from his employer's plan, a small pension from his employer, and what he'd recieve from Social Security Disability once he qualified. We thought we'd be okay. When we got the "Full Plan Description" rather than the "Summary" from his employer, turns out they reduce what he receives from the employer's plan by the amount from Social Security and the employer's pension payments. Ouch, we won't lose the house but we found out really late in the game how much less he'd recieve. Apparently, that is a pretty common clause in most employer's long term disability plans. We are opting to delay the pension so it will be a little bit more after he is 65 and the company's disability payments stop.
  • Start looking at the Social Security Disability website and gather medical records or other documentation along the way. That way, if he does need to stop working down the road, you'll have a start on the paperwork that you'll need, or if he keeps working, you'll have a great file!
  • Think about asking for appropriate accomodations at work. Here's a great link with some ideas: https://askjan.org/media/PD.html. For a variety of reasons (good ones, we'd make the same decision again), my husband did not ask for accomodations until last year. Deciding when to disclose the PD at work is a hard decision and I think the answer will be different for everyone.
  • If symptoms get severe, consider short term leave to adjust medications, work on sleeping better, and upping the exercise. My husband did this and it turns out that has aided in approval for disability (the employer's and private plan anyway, we are still waiting on Social Security). It shows he worked hard and did everything he could in trying to return to work. Check with someone on length of times, etc. though as it can work the other way too.
  • Talk regularly and often with your husband's MDS about the impact of PD on his ability to work. In gathering our medical records, we found out that my husband's MDS had been documenting from the very first visit how PD symptoms might affect his ability to continue working (soft voice, keyboarding, etc.). A couple of years ago, my husband started completing and taking to each doctor's visit this form: http://www.parkinsonsaction.org/pdform. Over time, there is a record of how the progressive sypmtoms made it harder to work successfully.
  • As my husband began the process of applying for disability, one of the most difficult things for us is that in the application process, we've had to focus on what he can't do because of PD. That is not how we have ever approached the disease. We always focus on what he can do. That was really hard for us and what we figured out was that we only look at the "can't" aspects when we are actually sitting down with the paperwork or on the phone with the disability company representatives. As soon as we are done, we go back to our more postive way of looking at things. Works for us while filling out those dreaded forms with all the questions about what he can't do anymore.
  • One thing we are going to look at once the debt is taken care of is long term care insurance for me. Of course with his PD, we can't get it for my husband but figure I'll be there for him but I may come up short later on.
  • The other thing, is I've had to face the fact that I may have to work longer than I'd planned on. I'm finding that hard now that he is home! I'd like to be there too.
  • See if you can find someone you know that has been down this path. We had a family friend that went on disability due to PD a few years ago. He and his wife really helped us know how to get started on the process.
What I know is that his symptoms are so much better now that he has stopped working that whatever we have had to do to figure out the financial side has been more than worth it. We used to joke that his hand had already headed to work because his tremor was so bad sometimes.

Know that others on this forum will have ideas for you too. You will be surrounded by good wishes and support as you move ahead.

#69 jodyangel

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Posted 13 August 2012 - 07:54 AM

I think we have a unique situation in that because my husband is a new citizen here in the USA he is ineligable for any SS or assistance. I work fulltime as an RN which puts us in an income too high for any sort of assistance.
But living on one income is not always easy..

So since he hasnt put into the system, he gets nothing out. Doesnt feel fair to me..

We are pursuing a lawsuit again'st the company who poisoned him and caused this early onset parkinsons. Hopefully that will work out.

Oh did I mention my husband is 44 yrs old and I am 58?

Unique..thats us.

I love him so much, just wish I could do something to help...

#70 photofun

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Posted 27 August 2012 - 10:57 PM

Thank you Sharon for the welcome. I have been reading some of the stories and Dr.;s answers. I am really going to love this forum as I've learned a lot already. My husband was diagnosed at 52 we are sevven years into this and having several issues now. Cognative, OCD and very dependant yet able to do things.

#71 arvis rosendahl

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Posted 21 September 2012 - 03:06 PM

Hi I am a first timer to this forum. Not to sure where I am or what to do. My husband of 53 years is a cancer patiant we are told it is temanel at best 1.5 years, yesterday they told us he has parkensons bad ,he needs help with every thing now but is in no pain at this point,will this continue to be the case? what can I do to make his life more comfortable and how do I keep a possitive attitude ?
Inside I am so sad and scared but I try to be up beat for him. I have been reading the other peoples letters and find them very informative but I still feel alone and very confused . Will I be able to get past this feeling ?
Arvis

#72 tikka

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Posted 29 October 2012 - 07:45 PM

Thank you. My wife was diagnosed with PD about 6 months ago. She had a mild tremor which seems to be constant at times. She's sick to her stomach a lot these days. We found that if she doesn't eat breakfast before our walk in the morning that she doesn't get the sick feeling. But after eating it starts. I'm already on pins and needles. She is also pre osteoporosis. We live in a 2 story home and are looking at getting in a 1 story. I'm still working but I'm considering retiring a couple years early. I want to stay home with my wife. I'm exhausted already. I'm trying to get my wife to exercise more, rest more and take care of herself. I"m worn on trying to stay on top of her and her condition. I really need to do something, I feel like I"m about to snap, and that I may be loosing my wife. I don't know how true this is or not, but I'm burned out. I'm here looking for help for both of us. My wife is not medicated yet, she tried a medicine that made her real sick. I"ve asked her to talk to her doc about different meds. I can't even get her to do that.

Allen

#73 Golden01

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Posted 29 October 2012 - 08:26 PM

Welcome to this forum. I'm sorry that your wive was diagnosed with PD but hope you find information that will help you as you start on this journey. My one piece of advice (my husband, sister, and best friend from grade school all have PD) is to run, not walk, to the best Movement Disorder Specialist (MDS) that you can find. For these three so close to me, that has made all the difference for each of them. Second piece of advice is that getting them into "BIG" training or other specialized physical therapy for PD is important too.

#74 Joni

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Posted 06 November 2012 - 09:33 AM

Good Morning! This welcome brought tears to my eyes yet a smile to my face to see the warmth and caring of this group. My husband, at 61 yrs young, has aged so much in the 4 years of PD. With a 13 year old son, a full time job (I am 50 yrs young), we keep trying. PWP is in a unique situation and so are we caregivers...I am trying to get all the help andsupport we can and use this as a learning for our wonderful son.

Any tips you can giv eme re: how not get mad and overwhelmed? PWP depression and lack of motivation can be very disheartening....

#75 allyp2b

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Posted 13 January 2013 - 09:25 PM

I'm not really sure where to start... My fiancee was just recently diagnosed with PD, like a month ago. He has terible trempors, especially if he's upset about soemthing adn I'm pretty sure he's falling into a depression. I don't know what to do to help him. I am so in love with this man who is warm, sweet, caring, wonderful, everything I've wanted my entire life... He doesn't smile or laugh anymore. He doesn't play, just sits and watches tv. (Might I also add that he had full hip replacement surgery at the same time as his diagnosis.) He feels like he's a burden. I feel ignored. I feel scared. I feel worried and don't know what I can do to help this incredibly wonderful man of mine. Yes, he shakes, I don't care! Yes, he stutters and skips a step here and there, I still don't care! But, I miss MY hunny! Will he ever come back? I've tried getting him to go to counseling but he puts it off. I don't feel like I should call and make the appointment for him. It's something he needs to do. I can't find a support group locally but his doc has suggested he start one since he is so young (48) for young people diagnosed with PD. I just want to understand what he's feeling, what he's going through, what I can do to help him? Please... anyone? Do you have answers or are these the same questions you're all asking too? Thanks,
Ally

#76 Golden01

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Posted 14 January 2013 - 07:46 AM

There will be lots of support and information for you on the NPF website and these forums. My husband was diagnosed with PD seven years ago. My sister and my best friend from grade school also have PD. The disease causes lots of symptoms beyond tremors and some of what you are describing could also be side effects from medications that are commonly used in PD. My husband didn't do well on the dopamine agonists, like you, I felt he was "gone" from me. It took about six weeks after he stopped that medication for him to come "back". It is hard for us to know sometimes, what symptoms are coming from PD, which ones are from medication, and sometimes that there is something else entirely going on (we learned not to assume it is always PD when he had a thyroid problem a few years back).

Since we've been on this journey with PD, I think I have learned a few things. First, run, don't walk to the best Movement Disorder Specialist (MDS) you can find. Even if you have to travel a ways. Generally, things don't happen fast with PD and you will only need appointments every three months or so. Both my husband and sister see excellent MDSs and these doctors can help adjust medications, recommend therapies, and monitor progression. The special training that a MDS has does make a difference in the care he will receive. Second, excercise matters. Expecially with your finace's recent hip replacement, not moving much can often make the symptoms worse. Find a PD specific program like "BIG" or work with a physical therapist trained in PD. Here's a website with information on PD and exercise http://www.pwr4life.org/ (check out the videos, my sister is in some of them!). Third, learn as much as you can about PD. The NPF website and materials are a great place to start. The new book "Navigating Life with Parkinson Disease" by the American Academy of Neurology is good too. the Davis Phinney Foundation http://www.davisphinneyfoundation.org/ also has excellent resources and if you can attend a Phinney "Victory Summit", I'm confident you will find the day inspiring.

Your fiance is fortunate to have you in hyis life. That warm, sweet, caring, wonderful man you describe is probably still there. The facial masking that often occurs in PD may not let you see that as easily. Depression and apathy from PD can get in the way too. While you may feel like you can't make appointments for him, you can research and find options as well as offer to make the appointment once he has made his decisions about next steps. Good luck to you both.

Edited by Golden01, 14 January 2013 - 09:08 AM.


#77 allyp2b

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Posted 14 January 2013 - 09:18 AM

Thank you so much for your kind words and support. It seems like his whole world came crashing down with those words from the neurologist after he'd been told by two previous that it was just essential tremor. The neurologist he sees now specializes in neurological disorders and he's the one that gave us the sad news. But, in a way it is also happpy news, because there was another option that this could have been that is less "easily" treated. I just don't know the name of it, I never got to hear it and my fiancee can't remember what it's called.
I googled a movement disorder specialist and can't seem to find one in Idaho, especially not SE Idaho. I will ask his neurologist next time he sees him. Has anyone had their loved one who's been diagnosed seek counseling to help them through? DOes it help?
He's already in PT for the hip and I believe he goes again tomorrow so I will have him ask about PD specific exercises in addition to the hip exercises. Thank you again for your words. Good luck on your journey.
~Ally

#78 Lucille

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Posted 21 February 2013 - 03:34 PM

Hello, my husband is diagnosed with PD or Parkinsonian this all stated after quatruple bypass surgery. 3 years ago.....he never recovered. The cardio told us he would be 10 years younger, but every year things were getting worse..And now three years later we are seeing a Movement Discorder specialist in Long Island on 3/15. ....As a nurse I know whats ahead, but his progression seems fast. His left side is affected...He seems to take it like a grain of salt, whether he gets it or not, I havent a clue, but its has changed our lives dramatically, or at least mine.. I was a widow when I married him 7 years ago; and now he has been failing for three years...His kids are terrified, so there is not help here, my own children live on the West coast, I have many friends, and work from home...But I feel angry, and I am ashamed of that anger and resentment......I am not a mean person, but I feel mean and cheated...I seemed to have forgotten, the sickenss in health thing; I have been throught his before with my first husband whose cancer took him in 4 months....There I said it!!!
I am no Mother Theresa,

#79 Beau's Mom

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Posted 21 February 2013 - 05:36 PM

Lucille, feelings are feelings, not to be labeled bad or good. It is resistance to the feelings that keeps us stuck in them. When I allow myself to fully feel, I once again have control over myself. Resentment and anger are normal parts of the grieving process, and you are grieving the loss of a future you had planned. Both Parkies and caregivers have to grieve their losses on what seems like a daily basis. You have been cheated out of a picture you painted. I'd feel angry about that, too.

Caregiver support groups are a wonderful place to vent about what's going on at home and with your spouse. You can call the NPF hotline listed on this website for the meetings closest to you.

I saw a quote from Mother Theresa recently that I will paraphrase here: I know God will never give me more than I can handle. I just wish sometimes he didn't trust me so much!

You are not expected to be Mother Theresa. I suspect that when your husband chose you as a partner, he was impressed with your warmness and caring. You might also be reliving the losses sustained during your first husband's illness. Go easy on yourself. Life has thrown you two a huge curve ball. Allow yourself to grieve.

If the PD is still on one side, that's something to celebrate. He would be further down the road if it had spread to both sides.

Wishing you silver linings and lots of support. All you have to do is reach out.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#80 coacht

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Posted 22 February 2013 - 09:14 AM

Lucille,
You are not the first and you won't be the last to have feeling like that. My wife drives me crazy a lot of the time because of cognitive problems and I know it will only get worse. I hate to think what it will be like when the kids are gone and she doesn't have something to direct her activities to. I just pray I can last another twenty years or more the way it is going.
coach T




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