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muppetgurl    0

I am new here. My DH has bladder spasms. He has a cath and I'm not sure if that is the reason for the spasms. He takes meds for the spasms but it doesn't help. Can anyone help. He was told about the PD in June when he turned 63. I'm sure he's had it for a long time but was only being treated for depression. He refuses to leave the house. I work full time (also 63) and then take care of him. He has been disabled from depression since 2007.

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Dear muppetgirl

Why does your DH have an in dwelling catheter? Does he have urinary incontinence? I think that catheters are very uncomfortable, would wonder if he may have a UTI( bladder infection)? Maybe watch for fever & get urology appt. to see if he may also have an enlarged prostrate. There are also meds for that which can assist urgency& reduced ability to completely empty his bladder. I would also wonder if he has a good Doctor to treat him for depression & take do long to pick up on the PD? Has he seen a neurologist?

I think it would be hard for him to go out & about with a catheter- even with a leg bag ? What about DBS? I don't know a lot about deep brain stimulation but maybe could help with the incontinence if he has it?

In regards to his depression- has he seen a psychiatrist?

I am an RN / psychiatric - nurse counselor & we frequently use combinations of medications to stabilize depression & / or change antidepressants as sometimes they stop working or just don't work for certain people. It is somewhat like the PD meds- sometimes has to be tweaked to fit individually.

I am not an expert but I hope this advice may be of use.

We really need to support each other here so I am happy to offer a listening ear, if nothing else.

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Thanks for the welcome. I'm new to the forum and new to PD. My DH whom I absolutely adore is 39 almost 40 and was diagnosed about 18 months ago. We got the diagnosis about a week after finding out we were pregnant with our first child. I'm really struggling to come to terms with what this means for our life. I know I need to be stronger for my husban but I'm not doing so well with all this. I'm 31 and I feel like my whole life is upside down. If any other young onset family members out there have any advice, I could sure use it. I don't know if I can call myself a caregiver yet since I'm doing such a miserable job dealing with everything.

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tedybrs    1

Glad to have found this site as my husband was diagnosed with PD 25 years ago. Our son was 3 and our daughter was 6 years old. Rick was 38, young onset. I raised the kids for the most part, took care of DH through depression and all the changes that PD cause, and worked full time. I have come to too many hurdles,and am now mentally as well as physically exhausted. Now I am looking for the light at the end of the tunnel. HELP! Thank goodness I am retired. DH is my full time job. Thanks for any input you can give. :roll: Over whelmed!

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april1987    3

Hello, I am a newbie to the forum as my DH was diagnosed with Parkinsonisms earlier this fall. He is 53 years young. Presently, my mother-in-law is living with us and is in the last stages of congestive heart failure. I am working second shift at our local hospital (2:30 - 11:00 p.m) so that I can care for her during the day. My husband is an elementary school guidance counselor and helps me to care for his mother in the evening hours.

 

Today, my DH had his 4 month follow-up where the doctor stated that the odds are not good. In the last 4 months, his rigidity and tremors have increased. He grinds his teeth and snores while sleeping. He was diagnosed with sleep apnea and uses a CPAP machine. His gait is cumbersome and his biggest obstacle is DEPRESSION.

 

My question is this - can someone give me their thoughts on the different medications? We are on Carbidopa/

Levodopa, but this doesn't seem to be working. Today the doctor prescribed Requip® XL to be taken with the Carbidopa/Levodopa. The doctor also started him on Effexor for depression.

 

Any help will be greatly appreciated.

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april1987    3

Hi I just read your entry, I know it was written a few years back. sounds similar to my situation now My husband is 53 and the biggest obstacle is his depression and irritability. He has all 4 of the motor symptoms of Pd and on mirapex, it has helped the motor symptoms but he is still depressed which has been a problem for a long time. He has worked and been social etc, others wouldn't know about the depression but me because we really do share and talk.

 

Just wondering how things are going with your journey and if you have any insights to share. As a nurse I am trying to be as educated as possible, it is a field where they know very little and no concrete answers are present. The more I research the more I realize you need to take one day at a time, everyone is different.

 

blessings to you and your families journey

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Alyxboi    0

Hi I am new here.

 

Just found out my partner as PD, well she was told she did, but We will be going for a 2nd opinion soon. Not really sure as she is on some anti psychotics and has been on them for many years so has always had ticks from them. Recently she had a very bad stomach bug and had not eaten or or kept down any liquids for three days. I think that was the cause of the bulk of her issues, but the DR in the hospital sent her home with L-Dopa? I think it is. Anyways her PCP told her she had it from what the DR n the hospital said. only thing is she hasn't seen a Neurologist yet, so we hope to set that up very soon. I am trying to prepare for the worst of a PD diagnosis so if and when it comes it won't be such a shock, but I am having a hard time with it as everything I keep reading tells me it is highly misdiagnosed.

 

So cutting a long story short this is my first time here, and I a rather lost in the world of PD.

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Beau's Mom    1,060

Hi, Alyx,

 

I drove myself and my family nearly insane researching Parkinsons when I was first diagnosed. I believe that is quite a natural response (although not my husband's respone) to a new diagnosis. For me it was naturally self-limiting because I quickly became overloaded emotionlly and mentally. I've slowed way down in the obsessive thinking as I have chosen not to look beyond what I faced with today. I try not to project into the future either positively or negatively because I am not a psychic and therefore am mostly wrong in my predictions anyway! Stay connected here if you can. There is a lot of combined wisdom here, and you will generally find understanding from other members because they have been where you are. Oh, and Welcome!

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Valderee    0

Thanks so much for your warm welcome. I come at a point of desperation, as grappling with PD has been the most demanding and frustrating effort DH and I have ever undertaken--and his symptoms have 'officially' now gone beyond my ability to do this on my own. DH was diagnosed five years ago, shortly after we moved here to our new Active 55 home in retirement. In looking back, I can easily see that certain minor behaviors and 'moods' were precursors to his 'full-blown' symptoms and diagnosis. DH has recently been introduced to Sinemet ER overnight; and prior to this point had started to experience Sinemet-caused hallucinations, which he at that time recognized them for what they were. We would discuss these and I would assure him and emphasize that they were hallucinations. With the Sinemet ER, tho', his hallucinations have become much more frequent, more real to him, and difficult to discuss with him, without he thinking they were still real.

 

Per his neuro's instructions, I will be calling him tomorrow, to discuss DH's unsuccessful transition to the Sinemet ER. Seeing some discussions briefly so far on this website, I'm greatly encouraged that DH will benefit from the knowledge I gain, the support from other CGs, as will I in providing loving care and assistance to him!

 

Again, thanks so much for your warm welcome--it means more to me than you know!

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McCall    12

Hello all,

I am new of course, last Friday I finally got my husband to go to the Dr. he has diabetes and do I that was not under good control and also he has been suffering from depression deep depression for what now seems to be a bout two years. Many months ago if not longer I started to notice tremors in his hands and he shakes his leg constantly, noticed other things and started to suspect he had PD, since things between us had not been good, I had to walk on egg shells around him and watch what I said but I finally told him what I thought and mentioned various symptoms including balance and difficulty getting up and soft speech, always having to say What? and my hearing is terrific. He just poo pooed my idea and that was it, I finally got him to the Dr. Friday and he mentioned some of his symptoms, she did some test with his arm articulation and said you have Parkinson's, She put him on the Levadopa mix stuff and started him on insulin for the diabetes, [he had been resisting that for years] and on Zoloft for the depression, OH HOW I HOPE THAT PART HELPS SOON.

 

I was not with him in the office, never have gone in with him when he sees a Dr. but was in the Car. So he came out and said Parkinson's! He did tell the Dr. after she told him that I had suspected it, she has told me before I am a good diagnostician, I have MS, and late stage Lyme, and moderately severe arthritis.

 

As a result of my conditions we have wheel chairs, scooters, car with a lift and we recently bought but have not yet installed stair lifts for what is to be our retirement home. So maybe we will have to share, LOL

 

Anyway it is still fresh and the ramifications are HUGE.

 

I don't work realy never have, he works over a hundred miles away and drives about 3 hours each way to work everyday. He is 62 now, we have virtually no savings or 401K, lost those in two different periods of unemployment. also have massive debt.

 

Future does not look rosy even with the best of outcomes. and of course you cannot count on the best of outcomes can you.

 

Anyway, while I am not much of a caregiver, he has been mine for the past 12 years, I will have to do my best. Luckily I have 5 children ONE of which I believe will be willing to move to the retirement house we bought with his family and take care of us, I hope so since there is no other way I see to get help or care.

 

We had been hoping he could work till 70 to maximize the SS payments which is all we will have to live on but that now seems very unlikely.

also we just realized that where he works they have no disabilty insurance at all. not short or long term. So trying to find a new job is going to be very important while he can still work.

Well that is our story to know, I am sure I will have lots of questions and comments.

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Redoubt    0

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)

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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

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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.

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LUTHERSFAITH    228

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

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grandma2    0

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

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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.

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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.

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Golden01    330

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.

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jodyangel    0

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...

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photofun    2

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.

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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

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tikka    0

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

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Golden01    330

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.

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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....

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allyp2b    2

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

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