LIVING WITH PARKINSON’S

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Richard Perry, the man I live with, has Parkinson’s. He’s had it for over 10 years. He told me about it 4 and a half years ago on our first date. I knew it was a disease with no cure but he seemed so strong. He’s tall, well-built, athletic, despite the fact that childhood polio has left one leg without muscle from the knee down. I remember the first time I went to his house for dinner. I was on crutches because I’d had knee replacement surgery 10 days before. I looked at him walk and said, “wait a minute, I’m the one who’s suppose to be limping. What gives?” He laughed and told me about the polio. It’s a funny thing about Richard: He tends to laugh when confronted with challenges. He also said that he would lick the Parkinson’s. I said to myself, “No he won’t. There won’t be a cure in his lifetime.” But, Frankly, I didn’t pay it much heed. After all, it was just a date.

But then there comes love and I entered a committed relationship and I said, “Richard, if you don’t take your disease seriously and become an expert in it so you know exactly what your options are, I’m not hanging around.” And he did–become an expert. He has a top notch motor-disorder neurologist, he works out every day, does yoga, he takes his meds (well, I do have to remind him sometimes because, when his symptoms were getting worse, I went with him to see the doctor and learned that the timing of the meds is critical). Who knew. Seems I have to become an expert as well. After all, the disease has a long arc–20 or more years, and it’s not directly life threatening–so they refer to ‘living with Parkinson’s.’

I’ve learned that Parkinson’s is what the doctor calls a ’boutique disease’ meaning it affects each person a little to a lot differently. Some people’s torsos sway (one of Richard’s symptoms), some have very visible tremors. In some people it can affect swallowing, balance, cognition– the voice can become so soft it’s hard to hear. Richard stuttered as a young boy (though he won the public speaking competition in school 4 years in a row and doesn’t stutter when he is interviewed or making a speech) and so Parkinson’s, like all villains, has taken aim at his weak links–the stutter and the walking.

I discussed with Richard the pros and cons of writing a blog about his disease and we decided I should do it because his symptoms are increasing and I felt it was better that people know why he sometimes sways or staggers or stutters rather than them thinking he was drunk (which has happened) or just out of it. That’s another common symptom of this disease–loss of affect. The brain chemical transmitter dopamine is reduced in Parkinson’s patients. Dopamine has many functions, one of which can enable positive moods. When dopamine levels are reduced, muscle slackness can cause a person to look blank, uninterested, when, in fact, that isn’t the case. (Richard never seems to be in a bad mood.)

Since we’ve been together I’ve been sick a lot (I have a weak immune system) and have had numerous surgeries–knee, hip, back, thumb, etc due to osteo-arthritis. Richard has never even had a cold. He brings me meals in bed and ministers to my needs when I’m sick. I think a lot about all this. He’s much more of a caregiver than I am. I don’t see myself as an especially nurturing type. Still… I do believe my angels have put me in this situation for a reason. I am to learn from this, including upping my quotient of empathy and understanding; matching Richard’s level of kindness. (No one teaches courses on relationships to teenagers. If they did, maybe kids would learn to look for–among all the more talked about things–KINDNESS in a partner. Seventy-something is kinda late to figure that out, doncha know.)

Richard and I are both grateful that more and more people are talking about their Parkinson’s Disease, most especially and importantly, Michael J. Fox. So, with this blog, we’re publicly joining the discourse.

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  1. That’s a trully touching story : D I understand about looking after your partner too! My husband/partner was diagnozed with AML (Acute Myloid Leukaemia) in 2006. He had chemo, and full body irradiation. He was lucky in that one of his brothers was a match for using his stem cells to give my husband a Bone Marrow Transplant. I looked after him, by giving him injections in the stomach, cleaning and making sure the Hickmans access point ( an opening in the chest into the main artery, to deliver medications, etc, when put on an IV Drip.) One time we were being silly and playing around and he accidentally pulled on the hickmans cord. He was in agony, and some blood came out. I felt terribly guilty that I slacked off from being the ‘nurse’, that I was meant to be at that time in my life. I won’t go into more of it all, but I wanted to show that we all could be at any given time in our lives, a carer to a loved one, and so that’s when we learn to put others first, to be empathetic to our loved one and to be there for the family and friends ( those that stay that is. You learn just who your real friends are at times like these.) Empathy, Compassion, and prayer, plus don’t forget to accept the help of those around you. Sometimes we think we have to do it all ourselves. We need to learn that we can allow those who wish to show the empathy and compassion in different forms, and learn that their is support out there, even when we think there isn’t.
    Jane, I can understand where your coming from with sharing your story of yourself and your partner. I think it’s lovely that Richard comes and gives you attention and attends to your needs, and vice versa. This is what true loving relationships are about. I wish you both well, and will keep you both in my prayers. Now my husband does thqt too! He is cancer free btw…Hope I haven’t written too much! lol : )

    • I think you and Richard are great. It’s wonderful to see you both helping each other, and I hope that they come up with better treatments for Parkinsons, and a cure even more so.

  2. Thank you Jane and Richard for sharing this. This is a topic close to my heart. My father was diagnosed with Parkinson’s several years ago. He will be 75 years old this year. He struggled for quite awhile trying to find medication that helped without a lot of side effects. I think he has finally found something that is working for now. My dad has many of the symptoms you mentioned; shuffling when walking, tremors in the arms/hands, soft voice, and expressionless look often. His new medicine has helped with some of this. My mother does a lot of research to help better understand Parkinson’s. (She is amazing when it comes to educating herself about medical situations. My brother had AIDS. My mother did so much research that I think my mom and brother knew more than the doctors did. Unfortunately, the medical field was just on the brink of releasing the medicine AIDS patients use today when my brother passed away. My brother, mom, and dad are definitely my heros.) Are there any books or articles that you would recommend my mom read about Parkinson’s? I know once when I show my mom this blog she will have a zillion questions.

  3. hello jane fonda, i have read your blog regarding your partner aveing parkinsons, i used to work in a residential care home for the elderly and one of the clients that i used to look after was a loverly gentleman who also had parkinsons, he used to have bad tremors or shakes as we in the united kingdom would say but he was a very happy person. i just wanted to share that with you . king regards to you and your family.

  4. very good results controlling with HGH along with a gram of testrostrone. each day..along with precribe meds and food

  5. Looking forward to more entries! Thank you for sharing both of your journeys. My father has been living with this for 30+ years and he has been challenging himself (senior Olympics, band class, water skiing). I have spent many hours at UCSF with him and also at the Parkinson’s Institute. My father is such an inspiration to me and has never let this stop him from dreaming, laughing and loving!

  6. Hi Jane,
    this is interesting stuff! I am in a relatively new relationship, and I appreciate what you are doing together here….it is very beautiful…although both of us are physically healthy, we are both recovering alcoholics. That means that daily self-maintenance, and a deep compassion, kindness, tolerance and understanding for variations on the human theme.
    In any case, I find your website inspiring and feel I can relate to all you write although I am 48 (My best female friend and mentor is 70!)
    Thank you for being so honest, it eliminates so many subtle differences amongst us humans.
    All the best from Berlin, Germany.
    Lisa

  7. Thank you for always aspiring to be emotionally honest. It is what I admire the most in you. I’m so happy you found your voice to become a guiding light. And such a rare one. I love you. You know. The way a person can when they don’t know you. You have taught me so much and I want you to know that. Xo

  8. I wish both of you health, happiness and strength. It’s important to speak up about health issues, which should never be taboo subjects in an intelligent society. Physical and mental health contributes to happier, more fulfilled lives and discussion allows those who luckily have both to be more understanding and just aware of the problems of those who have to fight a little harder. Blessings to you both. 🙂

  9. Dear Jane,
    When I have briefly met you in 2006 at a book signing was such a highlight for me in my life! Your honesty and being so open made “My Life So Far” such a great read and with that you have also helped many people to be open with their issues!
    Also with this amazing blog further proves that I am proud to be a fan of yours! You are not only such a great actress in many amazing movies but an amazing writer, you have helped so many people just by being honest and giving!

    Please do a signing in London again in the near future, was hoping when you did some US dates for Prime Time, but sadly it was only in the US.

    Love,
    David

  10. I love this. It is curious that you don’t see yourself as an especially nurturing type; and even more curious how our experience with someone and how we “see” them can differ a whole lot from how the other person sees themselves. You have been nothing but kind to me, and you have been what I felt like was very empathetic and understanding. And so, in that, have felt very nurturing. I am glad that Richard agreed to this blog. Most of what you ever have to say goes far beyond the initial subject. You are a provoker of thought, in me anyway; and I love that you share some of your life here with us.

  11. Another arena for you to discuss and inform. Thank you for all that you do to keep your public informed with the correct information. Best to you and Richard.

  12. Dear Jane
    Thank you for your wonderful blog. Very much of an inspiration. Richard too of course. This is the first time I have ever “blogged.”

    Last summer I was given a PD diagnosis. I am just figuring out how I will “live with PD.” (exercise!) Dogs and grandchildren help. Qi Gung, too. But what was surprising was how varied the symptoms are. I never know when the anxious feeling will arise. What symptoms will present? Keeps me in the present. So much is unknown and misunderstood by friends and family, and me! I look thinner but not much different. Hard for others to remember. So I muddle along hoping things will get more clear and less isolated….and they do. Bit by bit. I am lucky enough to have two spectacular grown children (I am 65) who help me in various ways. What a blessing. Also I have a practice that gives me something of a rudder navigating these waters. And the fantastic healers at UCSF have guided me through decision making.

    I have always loved your spirit and you bring that to bear now for all of us as you have before. Thank you for stepping forward.

  13. Hi Jane & Richard, thanks for sharing! My Dad had PD and I have PD, and a great wife and care-partner! A book I highly recommend is “The Peripatetic Pursuit of Parkinson Disease” written by over 100 people with Parkinson’s, MDs and neurologists. You can find it on Amazon. Many moving stories, practical advice and inspiration.
    -Brian

  14. Also for anyone with PD:
    Deep breathing (improves posture)
    Meditation (calming)
    Yoga
    Vigorous exercise
    Tai Chi for balance
    Qigong (magical)
    Healthy eating with high fiber
    Daily hugs and laughter !

  15. I think it’s great that you discuss this openly. Also that he was so honest with you from the beginning. I have familial tremors which seems a bit like Parkinson’s for the hands or even head shaking. People do wonder. My aunt (mine is hereditary) had to drink with a straw. I’ve had people ask me why I am so nervous. The more they understand, the less they will judge.

  16. I’ve looked at this photograph about a hundred times. I love that you are looking “at” Richard. I think the photograph, in and of itself, says a lot. Richard has his shit, you have your shit; everybody has their shit. You are looking “at” him. I don’t really know how to say it like it is in my head. :/

  17. You always speak of becoming whole. When I saw this quote, it reminded me of you after reading your latest blog about Richard. “A person who embraces the desire to find wholeness within his own being, soon learns the importance of tending to relationships, caring for the planet, having compassion for humankind and accepting and tolerating differences among a diverse population of people.”

  18. This is off-topic, but I read this and I wanted to share with you in case you haven’t seen it:
    “One of the performances that made me want to become an actress was seeing Jane Fonda in They Shoot Horses Don’t They? That was quite extraordinary.” It was Cate Blanchett who said that. It really was heartwarming to read: a genious inspiring another genious.

  19. The very best to both you and Richard. Please let him know that I think of him often, he holds a very special place in my heart. I plan to be in LA this summer and it would be lovely to do lunch, I will call him.

  20. MODERATOR PLEASE MAKE SURE JANE SEES THIS POST VERY IMPORTANT!
    Dear Jane,
    you wrote: “Still… I do believe my angels have put me in this situation for a reason. I am to learn from this, including upping my quotient of empathy and understanding; ”
    In my personal spiritual experiences, sometimes you don’t realize that something spiritual happened until later on after the fact.

    I don’t know if you’ve seen my previous carefully worded posts, with links to videos I made for evidence, to make a case for what I claim. And without enough information you may think I’m crazy. And that is a great tragedy.

    You are claiming ANGELS (God) have put you in a situation for a “REASON”!

    But I have recently posted that I believe God has put you into a situation “for a reason” where you commented on Aging and I saw it. Then I realized you perfectly fit the situation at hand. I had seen mention of a “Jane” within the Bible Code seeming to play an important role in my future. You know people with great power and influence, people with the power to start and stop wars and it’s those people who I need to get involved with finding (cured within 2 years) a cure for paralysis so that they know how and where it came from; via clues from the Bible Code. And hopefully this would change their hearts and minds towards peace and love for Mankind instead of destruction of it. “Reverse Aging” is a bribe/reward to make sure they are interested and committed.

    IF you are now saying God is taking action in your life for a reason and that you are to learn; well, it’s just what I’ve been saying! If you’re thinking to yourself, “Hey, Jimmy! Prove it!”
    Well, that’s what I’m trying to do!
    I say bring me your best and brightest. We shall work together on the Bible Code and God willing, cures will be found. It will quickly become apparent that there is TRUTH in the Bible Code.
    I have already asked you just to spend a few hours on a little sightseeing trip in Chicago or NYC to see if God would show us a “sign/omen” confirming that God is taking action and approves, if you desire that experience before getting involved. And all I really need is for you to contact a few people with power and influence who probably are already very interested in “Reverse aging” and say there’s a man who believes he can find the solution within 2 years but he needs help to do it.
    It seems the “powers that be” are on a suicidal path of destruction that the Bible predicts will destroy a third of Mankind, and it is for that EXACT reason that God would let cures to be found within the Bible Code in order to stop it!
    IF that is the case, what does it hurt to try and find cures? I’ve said before the Bible Code has made a prediction about my life that came true 6-7 months afterwards, so I KNOW it works!
    You wrote:
    “I’ve learned that Parkinson’s is what the doctor calls a ’boutique disease’ meaning it affects each person a little to a lot differently.” And “I am to learn from this, including upping my quotient of empathy and understanding”.
    Unless you had Richard’s disease, you can’t really know what it’s like or what he would do to cure it. Ask him if he would like to see what the Bible Code can do. When it comes to “Reverse Aging” and in this case “Parkinson’s”, it may be that cures are possible on a case by case situation instead of one size fits all. So, I could look up what would cure just him or a cure in general.
    If you know the researchers that Michael J. Fox has, we and Richard’s personal Dr. can have a mini-conference and examine what the Bible Code suggests in curing Parkinson’s. Or Richard and I with his Dr. can look at the Bible Code together first and maybe concentrate on his own personal cure. If you see positive results with Richard maybe then you will help me with curing paralysis and “Reverse Aging”. You don’t even have to meet me if you don’t want to.
    What would Richard say if I came for 7-10 days so we could get acquainted and brainstorm for a cure? But, believe this to be true Jane, Richard’s cure will have to be found fast if it is to be found out in time to prevent what I fear is coming. So, this isn’t going to take one or two years. This needs to be cured in just a few months; or shall I say you will quickly see a noticeable improvement in his condition?

    Take a leap of faith and see if God is really working through you. Ask Richard what he thinks.

    Hebrews Chapter 11:6 “You see, it’s impossible to please Him well without faith. Because, whoever wants to come to God must believe that He exists and that He rewards those who eagerly search for Him.”

    Sincerely , Jimmy

    • Dear Jane,
      I took a small look into what the cure could be for Parkinson’s within the Bible Code. I see the word “Chlorine” has appeared and I suspect that some form of “Chlorine” is a cause of Parkinson’s. “Changing” the “Brain” is a theme I see.
      When you look at Matrices seeking a specific cure, it’s a more mentally draining effort because of the deep concentration you go into. You’re trying to put pieces of a puzzle together and you try and see all the connections as you go along.
      As I looked, I began to wonder if the way to “Reverse Aging” is also the cure for not only paralysis but Parkinson’s as well. I mean there may be more than one way to cure Parkinson’s and the “Reverse Aging” way is more efficient because it cures a wide variety of things at once.
      I would suspect that anything that improves brain function is also good for brain diseases, like antioxidants. So if you took vitamins & supplements to optimize your memory and increase intelligence when you are healthy, using those same things on an ill person should work.
      I’ve written to you before that whatever causes your immune system to weaken or malfunction opens the door to disease and I expect that goes for mental problems as well.
      And that might turn into a discussion of your intestines gut flora and how it relates to your immune system. Good bacteria and bad bacteria. If “Chlorine” is being mentioned, is it a problem in the brain or in the gut flora?
      So, I’m just letting you know, early indicators suggest something can be done.

      Sincerely, Jimmy

  21. Another great post , that I saw first on the “Daily Mail” ! One of my elder prother suffer from P.D. and by reading all that, I know a little more about it now! Thanks for sharing it all with us, and by telling how you get that sick sometimes, proves that you are really a “people like us”. That´s why I always have been and will be your trully fan. From Brazil with love.

  22. Hi Jane,
    I was just diagnosed last month with this disease. It is very hard to accept. Last summer I would fall for no reason, I also sway when I walk and hug the walls when walking with even trying. Swallowing is difficult also. A couple of months ago I would notice my hands trembling and weakness on my left side. They started me on a drug called Azilect that is suppose to stop any more damage to the dopamine from dying. This is my second chronic disease and I am scared to death. I have to keep strong for my family and thank god I have support. I did sign up on Michael Foxes web site. I pray for everyone.
    Karin

  23. Jane,
    I know you probably know this already, but just in case you don’t, there are HUGE results coming in on the homeopathic use of organic, unrefined coconut oil in the treatment of brain related illnesses. There was recent clinic with Alzheimer’s patients in which they’ve seen amazing results.
    PLEASE have Richard take it daily. I take 1-2 tablespoons daily with some Manukah honey and my 50-year old ass is thriving these days.
    At normal room temperature it has the consistency of shortening. Make sure you buy the unrefined, virgin, organic type.
    I’m being totally serious about this. Please have him use it and for yourself also as it promotes optimal health.

    • Thank you, Ralph. Richard does drink coconut milk but this specific recommendation looks interesting and we will follow up. Thanks.

      • Dear Jane,
        I knew about this and I would have told you, if you had given me the chance.
        Coconut Oil Touted as Alzheimer’s Remedy http://www.cbn.com/tv/1472017228001
        And I know this guy exists. Henry McCance is a director of Cure Alzheimer’s Fund, which he co-founded in 2006, a new non-profit which uses the venture capital model to fund breakthrough research on Alzheimer’s Disease.
        http://www.greylock.com/teams/32-Henry-McCance
        I told you a cure may be specific to each person. So far, the Bible Code says in Richard’s case, BASIL (the food), could be really important. I suspect if he takes it like a medicine, say 2-3 tablespoons 4 times a day, he’d see results in 4-6 weeks, maybe sooner. Ask your doctor first. There may be more that can be done than Basil, but it requires a response from your side.
        Sincerely, Jimmy

        • MODERATOR, PLEASE MAKE SURE JANE SEES THIS POST!
          TUESDAY APRIL 15–MONDAY, MAY 26, 2014. 42 DAYS
          Dear Jane,
          I’ve written to you that you fit the profile of someone that the Bible Code suggests would/could help with curing paralysis & spine injuries and “Reverse Aging”. You seem to think otherwise.
          Okay. Since you are unconvinced so far, maybe you are right. But let’s just make sure about it.
          IT TOOK 42 days from the day Jesus died to the day He ascended to Heaven. In the Bible Code, weather predictions of MAJOR storms can occur around 42 days/6 weeks beforehand.
          IF it’s GOD’s TRUE DESIRE that YOU are to help me, then I will leave it to GOD to convince you!
          STARTING April 15 – May 26 (42 days) I leave it to God to take action in your life and show you “signs/omens” that will suggest to you that He wants/desires that you assist my efforts.
          IF God does not “desire” you to get involved, then everything will be just plain old normal.
          From my personal spiritual experiences, here are some things to look for. 1) Someone acts out of character and does strange things they’d never usually do. 2) You’ll know something is a possible “sign” when it is very specific in nature and comes in bunches. 3) The “signs” occur rapidly.
          What I expect you may see: You may see “Rapture” signs. You’ll start to see things frequently in an abnormal amount, like all of a sudden you start seeing people with missing limbs all the time or you’ll see abandoned shoes or clothing in strange places everywhere you go. You may hear people talking about Jesus or God in casual conversation more frequently. You may start to have “spiritual dreams” about Jesus, the “Rapture” or the upcoming “4 Horsemen of the Apocalypse”. As you are slowly falling asleep “something” may grab your foot or feet, pulling “upwards” on consecutive days. You may start to feel as if a Religious/spiritual “theme” is being “manifested” in your daily life; even the things you see on TV may echo it. You may see a man dressed like Jesus, not at a Church where you’d expect, but at an airport or at the grocery or just walking down the street; where it’s unexpected.
          In my experience spiritual things can occur really fast. Something may happen 1 minute after you first read this. I would think things will start to “manifest’ in the first few days, right away. Or, as in a previous experience, at the very last minute of the 42nd day, maybe even the 43rd day ( 40 days & nights of rain for Noah, then sunshine day 41!).
          These 42 days (43?) are a chance for God to show to you if He desires for you to get involved; so if strange things start happening don’t just assume it’s luck or coincidence; pay attention to a possible underlying message that God is taking action for you to see.
          On a Worldwide scale, if you see a great economic crisis arise, WW3 starting or some serious other type of world event that scares the hell out of you, contact me right away!
          You should have my information from previous posts. If not, contact me now.
          Please DON”T be frightened if God is showing you things! This is all a blessing for you! Let me know if God takes action!

          Sincerely, Jimmy

          • Dear Jane,
            I just discovered this NEWS today, April 15!
            “Jackie Robinson’s legacy was memorialized on April 15, 2011, by fans, players and Major League Baseball, marking the 64th anniversary of the Hall of Famer breaking baseball’s color barrier. For the third consecutive year, all uniformed personnel at 15 different ballparks were asked to wear Jackie’s retired No. 42.”— MLB
            THIS MEANS at all ball parks in America today, everyone will be wearing the number 42! The number 42 is being celebrated nationwide today and today you start your 42 day journey to see “signs from God”! I had no idea that Baseball would celebrate the # 42 today.
            It appears God has begun to “manifest” “signs” for you already! This is an example of how quickly God can act and influence people! I chose April 15 as the starting point since there is a rare ‘Blood Moon” lunar eclipse today and should be an easy day to remember for that reason. “Blood Moons” are also said to be “Omens” in the Bible as well, so it’s an apropos day to start your journey!
            Sincerely, Jimmy

          • Dear Jane,
            Genesis 41:32 “Now as for the repeating of the dream to Pharaoh twice, it means that the matter is determined by God, and God will quickly bring it about.”
            APRIL 16–BASEBALL HONORS THE #42 AGAIN FOR 2ND DAY IN A ROW!
            I didn’t see any Baseball on April 15, so I missed seeing the #42 on all uniforms honoring Jackie Robinson. I thought they’d have the number on an arm patch. Today I turned on the Chicago Cubs game in progress and I saw the Pitcher’s number was 42. “Interesting”, I thought. Then the Batter’s number was 42 as well. I thought, “That’s strange”. Then I realize EVERY PLAYER has the number 42 on their backs and front, not on an arm patch at all, and it’s the only number on every uniform. Every player is #42!
            What had happened is that some Baseball games had been postponed because of bad weather(act of God). So, instead of Baseball waiting until next year to honor #42 for those teams, they honored it the next game. So, for the 2nd day in a row, all over the country the #42 is being honored/ “MANIFESTED”.
            This fits the pattern of a “sign from God” coming quickly, specifically, and in bunches.
            There are more obvious Biblical numbers I could have picked as a time period for your spiritual journey; 3,7,8,12,33,40,50,70,120 etc. 42 was kind of strange, but I felt somehow more apropos. And now you see how quickly the number 42 has “manifested”.
            So far, it’s looking as if God DOES desire you to get involved and assist me. Keep watching, Jane!

  24. My husband was diagnosed at age 35. We had babies at home and a still-growing family. It has simply become a fact of life and an issue like any other that just needs to be embraced with a spirit of gratitude. Thanks for writing this. I will enjoy commiserating about all the quirky things you deal with too. One big blessing about having PD- the amazing, strong beautiful people whom we would never have met if we didn’t have this disease.

    • Jill, I like (and share) your attitude: there’s always something positive that comes from challenges and set backs—IF we’re able to see it (and learn from it).

  25. Jane, thanks for sharing this.
    Nancy

  26. Jane, have you heard of food as medicine? I believe what we eat has a huge bearing on our health. Food can also be a poison that makes us sick. The Standard American Diet of high animal protein (both meat and dairy) causes much disease. Combine that with so much processed food, which has taken almost all the nutrition out of it and then adulterated with preservatives and chemicals of Frankenstein proportions, and further add oils at high heat that cause more illness, and no wonder we’ve got all this sickness in our population. I was very sick and I found Dr. Joel Fuhrman’s book “Eat to Live.” I was sold within the first 30 pages, because he makes so much sense. I’m 68 pounds lighter, completely off some meds I was taking, reduced others, and have energy to burn. I couldn’t walk around the block and now I can walk miles and miles. I can’t say that Richard’s Parkingson’s can be completely healed, but I bet he can be improved with a truly good diet. Check it out and see where it leads you. My best to you both! I’ve always admired your work and your endeavors. Great website here too.

    • Diane, both Richard and I are very aware of what we eat and what is counterindicated given our various health issues–Parkinson’s in his case, osteoarthritis in mine. Thanks, though.

  27. Great post! Chronic illness is a very hard thing to live with. Especially if you don’t “look” ill, i.e. invisible illnesses. It seems you both learn a lot from each other and support each other. I remember your first blog post many years ago when you first fell in love. Glad to see you still going strong after all these years.

  28. I’d like to encourage anyone with PD or a PD patient care-partner to join the Parkinson’s community group on this website so we can all share ideas and information.

  29. 😀 😀 i’m really sorry for having said this in this place… i didn’t see another place.
    And now that i have read the post, I would like to give Richard a message: remember to don’t let anything break your sense of humor. All the colours… black humor white humor… yellow brown…
    parkingson can be strong, but it’s only a spot in comparision with human nature. Never give up on you. There’s a whole eternity to take a time. If you need some time… just take that time, take air, and keep fighting, not with rage but with a good, strong and healthy spirit.
    Everything is going to go ok. you will see.
    I hope that theese words were not needed but i leave them here anyway… juuust in case….

    • I WROTE PARKIN-G-SON HAHAHAHAHAHA… it’s just that i am too used to the word HuntinGton… (that’s my war 😉 )

    • “There’s a whole eternity to take a time. If you need some time… just take that time, take air, and keep fighting, not with rage but with a good, strong and healthy spirit.”
      well… english is not my native langue so… i am going to make a precision just to separate concepts…
      if you need some time NOW, just take air, sleep a little maybe… and keep fighting… AND… non-affected people use to overprotect a lot… they are soooo soooo exausting sometimes… soooooooooooooo exausting… 😀 they are how they are. anyway, just understand them… even if they are so famous, so implicated and active in so many activities… they are non-affected people, exausting by days all the day on you, on your head, “do this do that, try harder, blablahblah”… don’t feel guity or alone if sometimes you cheat them with excuses to avoid some exercises, or if you get angry…
      bah… follow the river of their advices as much as you can…
      and also… remember one thing: no matter how strong the parkingson is… you will always be able to express yoursef with non verbal communication… and your capacity to laugh healthy will not be affected (i have seen it)
      so… once you are old enaugh… who cares if you are not able to do some activities.
      pacience, forgiving, and laugh… that’s the cure.
      … and yes, also medicins, doctors, exercises, and REAL science (special atention to smoke sellers, important… there are going to try to sell you infinite ‘magical solutions’ from every part of the world… it’s incredible the number of cheaters that are going to try to contact with you and your fiance)
      .
      .
      .
      and applauses for jane fonda. (sorry again, this was not the place, i found no other)

  30. Hello miss Fonda! I just rented the Butler on dvd to see your deleted scenes, very disapointing that they were not added….why? do you know?

    Glad to see you have many projects, love they lonh hair. Busy busy Jane…

    • Marc, what? I am not in the film? Nancy Reagen is cut from The Butler? Not possible.

      • Not from the film of course, but from the special features. I was hoping to see your scenes that weren’t not in the movie, in the special features dvd deletes scenes….Are you disapointed that will never get to see them ever?

        ps: your scene from the movie better living through chemistry, is so so short omg! The narration is great!

        • Marc, scenes that weren’t in which movie?

          • The Butler….I was hoping to see the scenes you did portraying Nancy Reagan, in the special features section, to see some of the scenes that were cut from the film. I saw it on the silver screen, then i rented the dvd, hoping to see the scenes that were cut from the picture. Like your other scenes playing Nancy Reagan. Usually the director puts those scenes in the dvd in the special features category and your scenes are not there at all and i was disapointed. Why did he not showed them? Are you disapointed?

          • MOST OF WHAT I SHOT WAS WHAT YOU SAW. NOT MUCH WAS CUT.

  31. Hi Jane
    Today is the London marathon. I was wondering. Have you ever run a marathon?
    Best regards
    Jason

    • I once walked a marathon. Was sooo sore after!!

  32. hi Jane,
    I wish you courage. it’s great to be able to help one another
    love is stronger than anything and it is very important. it gives you strength to fight against the disease !
    I think well of you xxx

  33. Happy Easter weekend to you and your family!! Thank you for sharing Richard’s and your journey out of the closet with us. I’ll never understand the shame associated with disease. Honesty requires strength enough to be vulnerable. Just a quick update: I remain 570 days (and growing) sober. I recently passed my management certification with Motel 6. I have found a church home that accepts me as I am, while challenging me to continue growing in my Christ-led spiritual journey. My marriage to Erik grows stronger — he is battling FIbromyalgia. I am glad that we will be afforded the opportunity to attend a conference on this disease in early May. Information is freedom. Be well, Jane and Richard. Love!

    • Dear Peter, thanks for sharing. My prayers go out for you and Erik. And congrats on your sobriety. Happy Easter

  34. Dear Ms Jane, A friend of mine was married to a gentleman that lived to be 85. She’d swear by it that the daily massage she gave him extended his life. She told me that he had outlived his friends with this disease. Daily full bodied massages to relax.

    Hope that you and Richard tie the knot.
    d

  35. Please say a very long distance hello to my old friend
    Rich!! I haven’t seen him since I retired in 1981–we
    shared hits together through the years!
    I see he continues to do well—Mozeltov!!
    Ed Silvers

  36. Jane,

    I just found your blog. After reading this post, I was struck by the strong mutual feelings of love and respect between you and Richard. I didn’t meet my life partner until I was 46 (5 1/2 years ago) and kindness is his prominent trait. He is the kindest person i have ever known and I can’t think of a better quality in a person.

    I wanted to ask you if you/Richard have looked into Neurofeedback treatment. Here is an article http://www.walesonline.co.uk/news/wales-news/study-finds-brain-retraining-can-1795050

    I discovered NF Treatment 2 years ago when I was diagnosed with Adult ADHD. It changed my life. It freed me from life long anxiety, major depression, sugar addiction, impulsiveness, non-stop motor, and chronic insomnia. It is a wonderful healing modality and worth checking into

    http://www.walesonline.co.uk/news/wales-news/study-finds-brain-retraining-can-1795050

    I started my own blog and this posting is my favorite about NF

    http://www.thehummingbirdeffect.com/the-brain-the-final-frontier/

    The brain is amazing..

    Mitzi MacBain

  37. Help Mitzi, thanks for the above links. I liked the examples of executive chef, 4 star hotel and the freight train! I have not formally being diagnosed with ADD nor ADHD! However, it does not mean that I do not have it. I do know this, the fact that I suffer a lot from depression. I have been since I left my home at the age of 17 to come to US and attend the last year my HS and attend college. Now, at the age IMF 54, I have depression tuning on the front burnmer at the same time anxiety, massive levels of stress topped with a healthy dallop of feeling of deafet and despair.
    My mother lost her life about 100 days ago, she battled dementia. She lived a very high stress life, up to 9 years before he death, she lived a very social and active life. A very close family member who is suffering from anxiety and depression, has been seeing the same health professional for 13 years, at times the prescription work and at time ineffective, resulting in change of medicines. By large that person is faced with climbing up the slippery slope. The doctor’s average visit time is 8 minutes+/- 3 every 4 months! So much for the behavioral therapy!
    Thanks for sharing this information. I will be looking forward to read additional posts! Cheers!

  38. Help Mitzi, thanks for the above links. I liked the examples of executive chef, 4 star hotel and the freight train! I have not formally being diagnosed with ADD nor ADHD! However, it does not mean that I do not have it. I do know this, the fact that I suffer a lot from depression. I have been since I left my home at the age of 17 to come to US and attend the last year my HS and attend college. Now, at the age IMF 54, I have depression tuning on the front burnmer at the same time anxiety, massive levels of stress topped with a healthy dallop of feeling of deafet and despair.
    My mother lost her life about 100 days ago, she battled dementia. She lived a very high stress life, up to 9 years before he death, she lived a very social and active life. A very close family member who is suffering from anxiety and depression, has been seeing the same health professional for 13 years, at times the prescription work and at time ineffective, resulting in change of medicines. By large that person is faced with climbing up the slippery slope. The doctor’s average visit time is 8 minutes+/- 3 every 4 months! So much for the behavioral therapy!
    Thanks for sharing this information. I will be looking forward to read additional posts! Cheers!

  39. Oh! By the way Jane and Mitzi please do check out the following link. It is very promising. It somewhat releats to Parkinson’s and not necessarily to ADHD.

    http://www.safeshare.tv/w/DTAINyElxY

    If it doesn’t work let me know!

  40. I have been looking for a blog about being a partner to a person with Parkinsons. 20 years ago my now husband was diagnosed with this disease and we thought nothing of it. (we believed there would be a cure in 10 years ). He is now 67 and it is beginning to be problematic. I can’t find anywhere that addresses the real issues the partner deals with: such as enabling to keep them living a normal life, how sex changes and how to deal with it, lose of clear speech and when to intervene, how to be all right about when he falls, how to deal with my inabilities and anger? My husband has a great attitude and tries so very hard to lead a normal life and will do so as long as possible. He does what needs to be done, (exercise, diet, careful monitoring of drugs) but now he needs help and I do not want to have our relationship change from partner to caregiver. I joined a support group for awhile and it was all about how to be a good “cheerleader”. I believe he is still the man I fell in love with and married and I want very much to preserve that. If you know of any resources that answer these questions please help. Thanks.

    • Annie, whew! What good, important questions that I am grappling with myself. I know that if I become ‘caregiver’ our lover’s life will suffer. He’s a much better caregiver than I am. I’m not cut out for it. All I can say right now is that whatever you do (or don’t do) try and be kind. That’s my mantra—and I don’t always live up to it. There must be books/support groups that do more than make you a cheerleader. Wish I had the answers. xx

  41. Have you ever heard of the healing stone called Angelite? I was allowed to discover the healing properties of this incredible stone and have had it heal burns and bruises overnight also cancers, tumors and broken bones in weeks. It is a mineral and will help strengthen your bones and your hair will become thicker and grow. The angelite tools (that glow in the dark) helps release pain and stress in minutes. Jayne Seymor may remember me I had a crystal store in Topanga caynon and we did a Patch Adams fun raiser together (around 1999) and I gave away free massages to all who came to the event. You may want to ck angelite out . I believe it can help you a lot. Much admiration. Cathy

  42. Thank you Jane. I was diagnosed with PD three years ago and ironically these years have been among the best in my life. Every aspect of my life coming into balance, especially my relationship with my husband. I work daily to stay right here right now, to stay in gratitude and acceptance. Life is magical, we are beautiful.

    Do I have fear, of course. Do I explore all potential treatments, you bet. Currently I am doing breath work and acupuncture (Dr. Wen in BH). But nobody is getting out alive and we may as well relax and practice letting go! We try to control (I do this with symptoms), but it is in letting go that we obtain the true ability to creatively direct our lives. Observing my symptoms with curiosity and acceptance is a form of letting go for me and brings relief. Deep body intuition then can arise to help us to know what is the best course of action is for us. Hope this is helpfull.

    • Very beautiful, Nancy. thank you. I have been told by a woman I met recently in Boston that during mindfulness meditation her father’s PD symptoms disappeared!

  43. Wow. Yes, this morning I was doing a meditation taught by the hugging saint, Amma. In the beginning, I experienced tremors on my right side but as I “clicked in” to another level (alpha?) they ceased. Now I just need to be able to meditate while on the 405….LOL.

    Thank-you!

  44. Hi Jane,

    I came across your website searching about you after watching the AFI tribute to you on Turner Classic Movies and Summer Under the Stars, which I’m an avid fan of. I had planned on just leaving a comment on how touched I was by your son’s tribute to you, as well as how much I didn’t know of your other accomplishments beyond the Hollywood realm. As I was watching the film clips of your career, I hadn’t realized how much the films have been apart of my life, starting with Julia, then 9 to 5, and On Golden Pond. From there I had read portions of your autobiography that shared such private information about your Mother and mental illness, as well as the relationship you forged between you and your Father. It hit a chord. I can’t remember exactly what you said, but I remember on a talk show how you defended Michael Jackson and his religion, one that I shared with him. I discovered other aspects of your life and activism, and would try to defend you to some that would negatively comment on your activism during the Vietnam war. To be honest not knowing much about the Vietnam War, I didn’t really know how to respond to them , so I was really touched by the words of the man in the wheelchair, Ron Kovic . I plan on viewing that film “Coming Home”, among other films highlighted during your tribute. But as I was perusing this site, I came across this story of Richard and Parkinson’s . Just wanted to share a tiny bit of information that I came across via a friend who is a speech therapist.. Upon returning home from a conference on Parkinson’s, she told me about a supplement that a physician had spoken about at that meeting and how it showed promise to those afflicted with that disease. The supplement is coenzyme Q10 or a more absorbed form of it called Ubiquinol. Hope that information might be of use to Richard and others with Parkinson’s. Wish him all the best.

    I am a great admirer of both Doris Day and Katharine Hepburn, and include you in that club. If you have time, I’d love to hear your thoughts on both those actresses, as people and actors. For me, it was not only their great talents, but what they accomplished in their personal lives. Happy that Doris is still with us and going strong in her activism for animal welfare. I had the great fortune of meeting Katharine Hepburn at all places, a movie theater here in Florida, Not wanting to invade her privacy, but being star struck, all I could muster saying was how much I enjoyed Bringing Up Baby! LOL. She was so gracious, that in the parking lot as we were walking to our car, we heard a car horn, looked up, to see Katharine waving to us from the back seat of her car! Still waiting on that chance with Doris Day, missed it at her 90th birthday fundraiser this year!

    Did not intend to write such a lengthy message, but I’m glad that I did. Again, thank you

    Craig Marquis

    • Craig, thanks fo all that you wrote. I am shooting my new Netflix TV series with Lily Tomlin and have no time just now to write about D. Day and K. Hepburn. I will blog about my series this weekend. We’re working nights. xx

  45. I just discovered your blog yesterday — as I am listening to your audio book “My Life So Far”: delightful and such a treasure. (The quality of your speaking voice — the timber, the agile enunciation, the deep soul of it — is pure joy to listen to.) And, I was wondering if you were ever going to record some of your thoughts here as well as write them: that is to say, as you are looking out of a window, for example, or pondering your day, will you ever just record that moment on your iPhone (one example) and post it here? I ask you this because you have such an extraordinary storyteller’s voice. You possess one of the great American speaking voices.

    • Thanks, Daniel. I hadn’t thought of doing what you suggest.

      • Your blog, unlike a handheld newspaper, has such software potential for audio. And, your iPhone has voice memos in the Utilities section: a few taps and et voilà. You might really — really, really — like that sometimes.

  46. We have just released an app for hand tremor measurement for Android & Iphone. 10% of the proceeds are donated to the Multiple Sysetm Atrophy Coalition. If you’d like Jane, I could send Richard a free version of the app. Info about it is at: http://www.human-innovations.net/tremwatch/
    The android version is here:
    https://play.google.com/store/apps/details?id=com.humaninnovations.tremwatch

    and Iphone version is here:

    https://itunes.apple.com/us/app/tremwatch-tm/id912461232?mt=8

    Take Care,
    Steve

  47. Thank you for sharing your experience and suggestions. It inspired me 🙂 My mother had Parkinson’s with Lewy Body dementia. It was a terrible thing. I’ve researched a lot and found several connections with other comments left in the blog. I’ve found in my research that coconut oil is multi purpose – as an oral antibacterial solution (oil pulling) that leaves you mouth very fresh (there is a connection between oral health and overall health), as a oil that passed the blood brain barrier and reduces inflammation too. I use it as a moisturizer too. Finally, there is good research on Coconut oil and neurodegenerative diseases like Parkinson’s and Alzheimer’s because of its omega profile and anti inflammatory properties. There is also a connection between high blood pressure in your mid life as a predictive marker of neurodegenerative diseases. The connection is healthy blood flow. High blood pressure prevents blood flow to the brain as well as the rest of your body. Coconut oil, cardio exercise (thanks Jane!), inversion yoga postures, and breathing techniques are all about getting the blood flowing throughout your body. As well as stimulating the good hormones, dopamine, regeneration of your cells through the natural release of growth hormone. One other connection to this pattern with Parkinson’s – my mom didn’t have tremors when she was sleeping and Jane, when you mentioned mindfulness exercises stop tremors, it sparked the memory. There is something about the ability to relax – being mindful – controlling your thoughts – sleep that controls the tremors for Parkinson’s. And it wasn’t just deep sleep, my mom’s little cat naps were never interrupted by tremors. Just sharing thoughts, and hoping to find connections, patterns and answers. – Regards.

  48. There is always that look the female gives the male that says everything is all right, everything is perfect. What is amazing to me is how rarely this occurs in life. Young men and women need to know this and value it more than anything else.

  49. Thank you for sharing your story. As a decade-with-PD person (diagnosed at 43), Perhaps you and Richard your might find my blog about Service Dogs and Parkinson’s helpful (or, at least, enjoyable). http://www.limyoga.com/service-dog-parkinsons/

  50. Jane, thanks to you for taking this challenge. I am a caregiver for my 82 yr. old mom with Parkinson’s and Dementia. Two years ago I was diagnosed with PD also. Talk about having to live your future in advance! It’s people like you that give hope to PWP. I am going to have to depend on a caregiver some day. I hope my husband sticks with me through it. He has pledged to do so but this is a very difficult disease to deal with and I know what’s ahead. I am not really a very religious person but prayers are always a good idea. Prayers and blessings to you and Richard.

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