Parkinson’s News Forums Forums Family and ​Caregivers​ Both myself and my wife have Parkinson’s!

  • neurodoc

    Member
    July 23, 2024 at 11:08 am

    This is not as uncommon as u think.The critical thing is the diagnosis.Is it parkinson’s for both of u or one has parkinsonism,which means that many small unidentified strokes might present with similar symptoms?To ensure that,u must both have a dat scan positive.In my practice women get it harder since after menopause there are bone problems and need constant attention,also urinary incontinence might be more common if she has given birth.Talk about all this with your neurologist

    • ajs1

      Member
      July 24, 2024 at 3:22 pm

      Okay doctor, and your reply you indicated is not as uncommon as I may think. Interesting in your practice how many couples both have Parkinson’s.? Or parkinsonian because somebody has Parkinson’s will show also parkinsonian. I’ve been to Stanford neurology department nine times with my wife. She did the ultra focus ultrasound twice with a negative results. She did the DAT test inconclusive results at Stanford. Sameon doctors office in Santa Barbara twice, then do UCLA three times, they’re the ones that got her on the right medication because the carpidopa lipa dopa makes it very nauseated. Been to UCSF once for a consultation on DBS however he referred her to Stanford and eventually we ended up at UCLA which helped my wife get on the medicine. Because of my experience with her I know I have Parkinson’s not parkinsonian. Forgive me with the spelling but that’s all Google talk text is. Oh by the way all three hospitals have never heard couples having both Parkinson’s. I was just curious if it did exist, I’m sure it does but I won’t know until somebody tells me what the percentage is. Thank you for your reply though if you have some specific medical knowledge that you can share with us let us know like how about a cure! But very little action or I should say a lot of action with campaigning with month for money but no cures. Very irritating. Is one company who bleeds through the use of fg1 medication derived from the placenta, they can grow veins in the brain and other audio areas such as the heart and cure or leave it some medical conditions. However in the United States the FDA will not even give him plans to test in the United States, so he’s testing another countries. Canada and Europe have cleared a medical device similar to diabetics pump, that will pump medication into the patient like diabetic pump to alleviate the symptoms. . Again in the United States the FDA will not clear the system for the US. Thank you for listening to me and I hope somebody out there finds a cure at least the United States will clear a system to help with the symptoms of Parkinson’s disease.

      • havenonick

        Member
        August 11, 2024 at 12:10 pm

        My Wife and I both have PD.

        I was diagnosed 5 years ago but suffered from symptoms for the past 10.

        My wife was diagnosed early. (2 years ) Do too the signs we both recognized.

        We had never heard of another couple diagnosed before your post.

        You’re right when you worry about what’s going to happen in the future.

        As my wife PD progress we remember me at that stage and can’t help anticipating what’s coming.

        I have read that Parkinson can have different symptoms from other patients.

        I just pray that she doesn’t experience everything I’m going through.

  • Robert Ruiz

    Member
    July 23, 2024 at 2:08 pm

    No! Thank God! Lol

  • Whit

    Member
    July 23, 2024 at 2:49 pm

    I am absolutely terrified of the possibility of this because my husband needs a lot of care.

    • prff

      Member
      July 24, 2024 at 3:03 pm

      Yes, dear friends, patients and care givers, my wife and I live the dual condition of patients and care givers.

      In our house we have a large number of medicines and devices to fight our daily battle.

      What never fails is the desire to smile at our limitations, at our pains that are increasingly difficult to manage.

      Perhaps others may judge them as fools who have not done well

      The situation nor do they know what fate awaits them…

      No it does not!

      We simply chose to fight like a small but fierce army.

      We have lost many battles, painful ones, but we are sure that we will win

      War.

      Do we believe we are strong and invincible?

      No!

      We are parkinsonians not idiots!

      Paradoxically we can say that our strength has been…. :

      our awareness of being weak and fragile.

      For two, a glance is enough to understand.

      Both with young onset, my wife has had PD for more than twenty years….while I’m about to reach 10.

      It’s not easy, but in real life nothing is!

      We don’t think we’re the only ones nor do we consider ourselves heroes.

      The positive side is that neurologists only charge us for one visit, even if two of us show up…..

      Hugs to all.

      Have hope….

      PD can be managed with what medical practice already offers us today.

      And the future is full of sensational scientific discoveries.

      Some, incredibly close to coming true…….

      Perhaps, and everyone can thank their God in their own way (also because I believe that the division is on earth between men and the only truth is written in heaven) we are really close to great turning points…..but we know the innovations they are always contested.

      Courage, patient friends and care givers, we can do it.

      Even in the darkest moments, when really bad thoughts inhabit our minds, we resist, the light will come.

  • ajs1

    Member
    July 24, 2024 at 3:25 pm

    Thank you for your reply, yes it’s very tough on both husband and wife have Parkinson’s. Especially when there’s no caregivers around to help.

  • bet

    Member
    August 7, 2024 at 3:11 pm

    Hi! My husband and I have been diagnosed with Parkinson’s. So far the worse problem for me is the worry that we may be unable to care for each other. Being realistic going to a nursing home is probably in our future. My husband has fallen many times, but he’s tougher than he looks and hasn’t broken any bones. So far we do ok on a day to day basis.

    We don’t cook every day as we have found “Factor”a meal delivery company. Once a week, we order 8 meals. They are ready in 2:30 minutes. One of the things I enjoy the most is that we can eat when hungry, and not have to wait until the other person needs to eat. The meals are delicious, most of the time and cleanup is minimal. It is definitely a stay at home positive.

    My husband is 86 and I’m 82 so normal aging is expected, so I find it hard to decide if we should worry when new problems appear. The answer is don’t worry, but I need something to think about at 3 o’clock in the morning.

    I just remembered one problem. I’m hard of hearing and he is soft spoken. So you can imagine-don’t have to say more.

    Hopefully, we will hear from more couples who have been dealt this hand. I would think that someone would start a study.

    One other thought is for the children who must comfort two parents with Parkinson’s. It can’t be easy.

    Sending love

    Betty

    • neurodoc

      Member
      August 8, 2024 at 10:59 am

      I think that u need help-a third person.Who is going to do cleaning and cooking and medication maybe mixed.So sorry

  • David Blacker

    Member
    August 8, 2024 at 4:05 pm

    Sorry to hear about the couples both with PD; life just isn’t fair.

    It does raise the question of a common toxic exposure ?

    Best wishes

    David

    Retired neurologist

    PD since 2016

    • sas

      Member
      August 15, 2024 at 8:56 pm

      My husband and I have both been diagnosed with Parkinson. I am 10 years out from my diagnose. My husband was recently diagnosed with Parkinsonism this year. For the last 9 years, I identified as the one needing care. Having a dual role brings lots of questions? What will the rate of our progression look like? Can I care for my spouse? Will we be separated in the process? Can we handle this on our own?

      A lot of these questions were answered when we decided to go into three levels of care, starting with Independent living. Presently, we’re down sizing in preparation to sale our home and move into Independent Living. There’s definitely a lot of loss. However, there’s a sense of safety as we will be surrounded with friends who have also made the decision to do the same. I think we would have remained in our home for a longer period of time if only one of us had a PD diagnosis.

      <font face=”inherit”>Our symptoms, presently, are quite different. Again, the </font>unpredictable character PD, certainly keeps you guessing. <font face=”inherit”> </font>

      <font face=”inherit”>I’m so glad to know that we’re not alone as a couple with PD.</font>

      <font face=”inherit”>Best to each and everyone,,</font>

      <font face=”inherit”>Sharon</font>

  • Susan

    Member
    August 20, 2024 at 1:06 pm

    Hi, Both myself and my husband have Parkinson’s, both diagnosed in 2016, and both had symptoms around 10years before, he’s nearly 70 I’m 68, I must admit it is hard at times but we both manage, our symptoms are different and some the same, he has more non-motor symptoms, I have more motor symptoms, I’m suffering from osteoarthritis and fibromyalgia, had a hip replacement and heart attract early this year,

    We both have fatigue sometimes I’m awake early, and my husband is awake most mornings around 3or4 o’clock in the morning, we do get some meals in I’m not keen on them but il eat them, we help and support each other as much as possible, was now got a cleaner and someone to do the ironing, plus the garden,

    I think getting a good support team behind you, we eat and sleep when were ready, we let our body tell us what we need, 🌷

  • Lexie Jones

    Member
    August 20, 2024 at 8:43 pm

    I, the wife, was diagnosed with PD in 2020. My symptoms have been moderate. I take a moderate dose of carbo/dopa, and I exercise regularly to try to keep ahead of the disease as I have read in numerous studies this is advisable.

    About a year ago, my husband started exhibiting noticeable symptoms of PD. He went to see my doctor and she said after a visual exam that he might have PD and she put him on a low dose of carbo/dopa. Since then, his symptoms have increased to the point that he has more symptoms than I have and his are more pronounced. A number of months ago, our doctor did a deep skin biopsy on him which came back negative for PD. It was 95 to 99% accurate for predicting whether or not he had PD. So, she said he has parkinsonians and not PD.

    Just this week, we went to Duke University to a neurologist there who specialized in PD. He did a very thorough physical exam on my husband after talking to us. He also was able to read all the medical records that had been kept by our doctors and the testing that had been performed in the past. He ended up saying that if he just went by the testing he had done, he would say my husband definitely had PD. But because of that deep skin biopsy result, he would be forced to say my husband doesn’t have PD, but rather parkinsonians.

    So, we have been living with both spouses with at least symptoms of PD. We’ve made it just fine so far. We have had to cut back on long distance driving trips which bothers us as our kids are 7 to 10 hours away. That’s been the toughest issue so far. Also, my husband tends to get really tired and fall asleep during the day when he should be doing things. I do have to rely on my husband often when I need to walk down steps. Other than these few things, we are doing ok.

    I do worry about our future though. What happens when we both get to the point where we both need more care and assistance. Dear God, what happens then?

    • neurodoc

      Member
      August 27, 2024 at 9:56 am

      May I ask the name of the neurologist?The skin biopsy though new as a test is not definitive

  • cary corso

    Member
    August 27, 2024 at 12:56 pm

    It is not as uncommon as you might think. The critical thing is the diagnosis. Is it Parkinson’s for both of you or does one have parkinsonism? This means that many small unidentified strokes might present with similar symptoms. To ensure that, both of you must have a positive DAT scan. In my practice, women have a harder time since after menopause they experience bone problems and need constant attention. Also, urinary incontinence might be more common if she has given birth.

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