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MamaGull

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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

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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

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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,

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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.

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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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Thank you coacht and Beau's Mom I appreciate the input and know that anger and resentment is born of the disappointments and been there done that..stuff that life is made of..Saying what I felt, in a space that no one really knows me but understands me was a relief...Just to say it!!

 

That's it: I hope I can take it as it comes; I know it will only get worse but for today, it was fine...And I suppose we can only live one day at a time anyway.......

 

thank you both......

 

Lucille....

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Lucille, Know that you are not alone. For me, the resentment came over the change in financial plans (no help the economy tanked about the same time as we were recognizing the impact PD would have on us). I can't say what changed for me (the economy got better!) but as we worked through the issues my resentment faded. My husband's MDS also gave us the name of a counselor that works with PD patients when he had to retire on disability. We ended up not needing to go but I felt better knowing that we had someone that would understand what we are facing.

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Thank you Golden, its such a relief to know that others have felt as I do.....I am trying...My husband doesnt seem the least bit concerned ( at least he never said so)....but he was always a laid back kind of guy who takes things as they com....

 

Lucille

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I am so glad I found not only this site but this forum and this caregivers thread! My hubby is 45, (I'm in my late 20's) and he was "unofficially" diagnosed over 10 years ago, before I even knew him. For many years it was only the hand tremors and it has slowly become more noticeable but now it seems to be progressing much quicker. Out of the blue his legs started locking in place causing much pain, feet curling up, hands/fingers locking in place, etc and I can tell it worries him. It worries me! He is such a hard worker, always has been but knowing how often and severe his symptoms are it scares me that he might soon have an accident, and he's had some close calls.... There are more symptoms which he just recently admitted to and most likely only b/c I asked him. Issues with smells, tastes/swallowing, he finally gave in to reading glasses, lol... He, like many men, doesn't like seeing a doctor or taking prescriptions unless it's an emergency so it has been hard trying to convince him to see a doctor about his progress in symptoms. BUT, I finally got through to him tonight! I know he has concerns for providing for our family but it won't do any good to ignore the PD. What if he has an accident at work, what if while he's driving his leg/foot stiffens and he can't take his foot off the accelerator? He would hate to be blood guilty. We have three little ones so if he's not careful our children could lose their father and I know he doesn't want that. It took a lot of convincing but as I said he finally gave in and agreed to me making an appointment with a neurologist nearby who is familiar with PD. I'm also starting to take charge in what he eats, ha ha, and keep insisting he start some form of exercise which he didn't agree to at first b/c of the work he does. He is active but it's just not the same. So, he finally gave in and told me to look up good exercises for PD patients. We are the type to deal with difficult times with humor and so we do with his PD and it really does seem to help. In fact, we can't wait til Micheal J Fox's new show airs. I showed my hubby the little preview of it and he had such fun relating to it, haha. MJF has a good view point on PD and I hope I can help my hubby see the positive so he doesn't get depressed as his PD gets worse. Since is symptoms have become noticeable to workmates and friends I am happy to say he has received support and his boss has even shown concern for his well being and loves having him around. Although we have support from friends and family it will be nice to learn from other caregivers and those who have PD. :)

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Welcome to the club, although not one we wanted to be in. Your support and that from those around you and your husband is wonderful to hear about and will be a strength along the way.

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Thank you for your warm welcome. I just joined as I am going through my mom having PD for 10 years now and it seems to have just gotten worse over the past few months out of nowhere. I look forward to talking to everyone here.

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I'm new to this forum.  My husband was diagnosed with PD in late May, while I was visiting relatives out of state.  I had known for some time that something was wrong and had been after him to see a doctor but he always had an excuse.  He's been on carbidopa/levodopa for almost 4 months now.  His tremor hasn't changed much but he's steadier on his feet and has some days when his cognition is out of the clouds, for a change.  He's more than twice as big as me, so I'm kinda concerned about how long I'll be able to take care of him.  I can certainly identify with those who can't get their husbands to see a doctor.  I think mine used to have the crazy idea that as long as he never heard an official diagnosis of anything, he couldn't die of whatever was ailing him.  I feel better knowing what we're facing because I can make a few plans for what's coming up.  But I'm very frustrated at the unwillingness of his neurologist to talk to me and at my DH's unwillingness to listen to me.  I sometimes wonder why I try.

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Welcome, Rasna, and thanks for sharing a bit of your frustration. We all benefit when a newcomer opens up because not all of us get here with the courage to do that.

 

As a PWP (Person with Parkinson's), and as a woman who worked in the medical field as a young woman, I am not afraid to go to the doctor. As the wife of a stubborn man, I understand perfectly your husband's thought system of, "If it doesn't have a name, it isn't happening."  He ignored problems in our marriage until it ended. 

 

You will find plenty of experience, strength and support here. Feel free to share on any forum at any time.  If you read the sections on preparing for the future, you will see that they recommend that the well spouse become Power of Attorney and/or Medical Power of Attorney for their PWP. That way the doctors HAVE to talk to you. Without that formal permission, they may be worried about HIPPA laws that protect medical confidentiality. At the very least, make sure your husband has added your name to the list of people who the docs and nurses can release information to. Then, there are some neurologists and Movement Disorders Specialists who are simply poor communicators, even to their patients. If your husband hasn't seen a Movement Disorders Specialist, I highly recommend you call the NPF Helpline for a referral to one near you. They are so much more knowledgeable than plain neurologists.

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i am new to this forum so please bear with me

i am a caregiver to my husband who has multiple health issues and has also been diagnosed with parkinsons.....he has been to mutiple doctors and has taken different meds with very little success. he was diagnosed nearly 4 years ago and things seems to be getting worse everyday, he refuses to return to the doctors who he considers will not be able to help him any longer yet says he does not want to live this way. life before parkinsons was a challenge but he was involved and though he has been disabled for now 20 years i feel it it now taken a toll on not only him but the rest of the family. 

i am only 45 and have been taking care of my husband for many years, yet the past few have left me very lonely and frustrated. i have now lost my husband who no longer participates in daily life, mood swings which are very difficult to understand, and no longer gets out of bed and makes me guilty that life is continuing around him and would prefer i sit in the house and i guess wither away along with him. im not sure how much longer i can continue to try and help someone who seems to not want to help themselves.  ive tried to get him all the help i can including therapy to help him through his feelings and condition but refuses it all or cancels at the last minute, i think this may be a selfish way of looking at things yet i feel that i do not deserve to have to do everything and more for someone who wont take on their own situation. i have supported the home working full time, running the house, raising the kids almost alone and im now sorry to say im tired. 

i have since had my own health issues including surgery and was forced to face it alone while continueing to maintain his care.  i often find myself with thoughts of leaving the marriage but realize i couldnt live the guilt of walking away. how do i cope in this situation knowing its only his life he is throwing away but mine as well.

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Thanks for your warm welcome and it is nice and sad to see there are so many others out there going through the same situation. My mother (62) was officially diagnosed with pd in 1999 and has slowly declined until the last couple of years. In 2011 she began seeing a new neurologist who is saying it is a parkinsonism not full blown pd. However, since this diagnoses she has rapidly declined. When originally diagnosed she was just having the tremors, then slowly started seeing all the signs. She gradually started falling, until right after the second diagnosis, when she started falling more frequently. Last year came the worst of them all, she fell and broke her right hip. For a normal person in their 60's that would mean hip replacement and physical therapy. However, for someone with PD, she spent the next 9 weeks in the hospital. 2 weeks in a hospital room and 7 weeks in in-house rehab. We were very fortunate for this, seeing she didn't have to go to a rehab facility, but could just stay at the hospital. Coming out of this, she is now confined to a walker, unless she is having a horrible day, where she is then confined to a wheel chair. She has a real hard time with this. My mother was a very outgoing and social person, but because of the walker she now doesn't want to go out. She doesn't want others to see her as handicapped. To top it all off one of the medications she is on makes her fall sleep at a moments notice. I feel for all those who are dealing with this disease and empathize with all the fellow family members/caregivers.

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Don,

 

If your not willing to share on the open forum, whats the point.  Your obviously looking to collect from people who are already suffering from this disease.  Share or go away.

 

Dave

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Thank you for the welcome, Sharon.  My husband was diagnosed with PD about 6 months ago, but he suspected it for at least a year before that. Sadly, his primary physician and the neurologist who made the diagnosis official were, I thought, very dismissive and not willing to give him their time. He immediately started on a homeopathic supplement smoothie and several supplements in pill form.  It is difficult to know if this has slowed the progression or not, but he said it made him feel better-probably a combination of better nutrition and a feeling of actively doing something for treatment.  He is very sensitive about people making light comments or even jokes about PD and its effects.  He was horrified when we went to a PD seminar and the presenters cracked jokes about the movement problems of some patients.  He has depression issues, but will not seek professional treatment, because he doesn't believe psychologists can give legitimate help.  It is very difficult for him to lose control and I am becoming depressed, too, as a result.  Any advice would be appreciated.

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Scubasmom,

My fiancée was diagnosed just over a year ago after suspecting for awhile and several misdiagnoses. Although PD is not ideal, it has completely changed everything in his life. He has become the most wonderful man I could have ever have been blessed to meet. He has his good days and his off days but as he says, "every day is a new opportunity." He has taken his diagnosis and become a better man, father and son. He has started college. He has begun a support group in out area. And most astonishing of all, he has begun an outreach in our community to help those diagnosed with PD, MS, or other disorders of this nature finding themselves without insurance, assistance in obtaining their astronomically expensive medications at no cost.

My Joe has become the most inspirational and wonderful man ever! I would think it may be nice if we put our hubbies in contact with each other. Joe may be able to help? He's not a psychologist or anything... Just a guy with an inspiring and bright future ahead of him, who just so happens to be diagnosed with Parkinson's.

Ally

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scubasmom and allyp2b -  Your posts took me back to when my husband was first diagnosed in 2005. He probably falls in the middle of the two responses you each have described. One thing I do remember is that in the beginning, it worked best for us that I be the one that learned about PD and then shared info selectively. I'd even go to PD seminars or meetings and then share just some info when I got back. It seemed overwhelming or discouraging for him to get too much info. I also had a fear that if he saw some folks with more advanced disease, he would really be discouraged. Now, after seven years, he goes with me and always comes home with something more to do to manage his PD. Christmas eve though, was markedly negative experience for him. We went to the late service at our church and there were several long-time members (all men) either with walkers or wheel chairs (some PD, some not). In talking about the service after it was over, he seemed to be quite discouraged and convinced that he would be one of the ones with a walker or wheel chair down the road. With PD being progressive, that is a real possibility, of course. Not jumping ahead to what might be ahead seems useful to me but I know we have to face the fears as they come.  He's having real back problems right now and isn't able to exercise as much which helps minimize his PD symptoms. Finding the balance of facing the realities of PD and staying optimistic is a challenge for us all. 

 

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Hi there--my name is Kim.   My dad, 80 years old, has Parkinson's.  His father had Parkinson's as well.   Up until the last couple of months, things have been going okay.  Dad did not drive, but otherwise was fairly independent.  He paid his own bills, scheduled his own appointments, did laundry, took out trash etc.   Just prior to Christmas, he had an episode of altered mental status, which was found to be due to a bladder infection (he has a neurogenic bladder).   In the ER, they kept him over night, and recommended him for rehab.  He was placed in a long term care facility, where I did not see much improvement, and he actually lost weight.  The breaking point was when he had another episode of altered mental status, due to bladder infection an pneumonia.   He was hospitalized for almost a week.  Needless to say, this time I more time to prep for a more preferable rehab placement.   In the past several months,  a whirlwind of social workers, speech therapist, PT's, OT's, doctors, palliative care doctors and nurses have crossed my path.  He is rehabbing at an excellent facility now.  Difference has been night and day.    They anticipate he will need about 10 days more of therapy, at which time he will come home.  I am trying to get services and equipment set up for his return.  I am single and work full time, so this is challenging.  I have no other family in the area. I am POA (medical and financial).   I am here looking to see what has worked and not worked for people, as well as support.  I am not new to the caregiver scene, as my mother had Alzheimer's Disease prior to her passing in 2007.

 

I know from experience that other caregivers can be the most valuable resource.  I look forward to learning and sharing with you!

 

Warm regards,

Kim

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My DH was just diagnosed with PD yesterday. I am trying to learn all I can. I have seen many symptoms and thought that it might be PD but for the neurologist to confirm it just has me feel overwhelmed. The doc said it is "early Parkinson" so had not put him on any medication at this point and will see him again in 6 months to see how he is progressing. I am searching for the things we can do for the best outcome to stall the progression of symptoms if possible. Also in addition to the PD he is intellectually disabled. We have been fighting for him to get SSDI for almost 2 years now and so this diagnosis may help on that front.  Any suggestions would be appreciated. 

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okiechick and Millie C - Welcome to the club you didn't want to join. You will find great support, information, and encouragement on these forums. Getting just the information I need about PD at the right time has been the challenge for me. Sometimes I feel like Goldilocks - not too much, not too little, but just right is what I want when learning about PD. Two books that have been helpful to me are "Take charge of Parking's Disease: Dynamic Lifestyle Changes to Put You in the Driver's Seat" (recipes are great) and "Navigating Life with Parkinson's Disease" by the American Academy of Neurology. Good luck in your journey. One thing I've learned is that everyone's journey is different but we all can help each other along the way. 

 

 

 

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Millie,

I'm so sorry that you have to be here, but i feel you're in a good place. My fiance was diagnosed with young-onset PD about 2 years ago, at the age of 46. Actually, about a month before his 46th birthday. He has taken a really crappy diagnosis and situation and has turned into something truly wonderful. He has started an outreach and support group. I'm in grad school and have turned my research project into a PD research.

I'm not sure where I'm going with this,  but welcome and know that you're not alone. It sucks that we have to be here, but you're among people who know where you are and can help. If you'd like, you are more than welcome to contact my fiance for more info and assistance, he might be able to help. His name is Joe and his email is joe@prophetfamily.com and just let him know that Ally directed you from the PD forum and I'll let him know you might be in contact. 

And, that goes for anyone else who is in need of assistance. His outreach is geared toward helping people with PD who cannot afford their Rx to get them through Patient Assistance Programs and filling out paperwork as well as support. His website is 

~Ally

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I guess I'm the newest member of this club. Thank you for the warm welcome.

 

Although my DH has been slowing down for awhile, a couple of falls in January led me to be concerned. After an MRI ruling out other issues, we saw the neurologist in March. We knew Parkinson's was "not off the table," but his symptoms weren't definitive. Suddenly in this last month he got much worse. After two more falls when he leaned over, we saw the family doctor who recommended we return to the neurologist immediately.

 

Last Friday he started a dopamine regimen, today was the day we got the official diagnosis.

 

I don't know how much I will post for awhile as we adapt, but I wanted a safe place to be. Will be reading a lot for now. Trusting those who have walked this path to cast some light on the journey. Thank you all for being here.

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