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. Hello Ms. Fonda – although you posted this blog nearly one year ago, I just learned of it. I am the CEO of the Parkinson’s Action Network (PAN) which is the unified voice of the Parkinson’s community in Washington DC. In essence, we are a coalition of other Parkinson’s organizations (National Parkinson Foundation, Michael J. Fox Foundation, Parkinson’s Disease Foundation, American Parkinson’s Disease Association and others) advocating for public policies important to people living with Parkinson’s Disease. Among other things, a key role of PANs is to be sure the approximately $150 million in federal Parkinson’s research investments continue to flow. I very much enjoyed your post about Richard Perry and would of course welcome the opportunity to connect with you and Richard about what PAN does and whether you would want to be involved in any way. Our web address is http://www.ParkinsonsAction.org and my email is [email protected]. Thanks for what you are doing to raise awareness about Parkinson’s!

  2. Dear Jane,
    I am most grateful to you and Richard for sharing your story about Parkinson’s Disease. I am 77 years old and was diagnosed with PD 13 years ago. My 2 daughters (both in their early 50’s) also have PD. We share the inherited LRRK2 genetic mutation. Although much progress has been made recently toward finding a cure and prevention for PD, it does not seem likely that it will happen in time for me or your Richard or so many others of the one million Americans who are waiting and hoping. When well-known and respected public figures such as you and Michael J. Fox help raise awareness and provide support, it helps speed up the the progress toward a cure and prevention. I have hopes for my daughters and grandchildren. On a personal level, I am so glad to have you on our side. I have respected you and felt a connection with you and have eagerly followed your career ever since we were 9-year old campers together at D—— Camp in Pebble Beach in 1946! Good wishes to Richard and thanks to you for taking up our cause.
    Respectfully,Sue Diamond Lifschiz

    • Sue Diamond, Douglas Camp. Wow! I’ve been thinking about my experiences there…some good, some not so good. Thanks for your email

  3. Hi Jane. My name is Hannah and I’m 11yrs old from Sydney Australia. I think you are an amazing person and have chosen you, as an inspirational eminent woman for a school project. I have read a lot about you(from what I can find) and I have a few questions I would love to ask. Is it possible to send them to you?
    Hannah x

    • Yes, Hannah. Send them to me at 1718 Peachtree St. NW, Suite 465, Atlanta, GA 30309

  4. I just watched all of Grace and Frankie (twice!) while staying with my daughter (who has Netflix) after DBS surgeries for Parkinson’s. Loved the shows, laughed and cried, amazed by the current content and scripts. Looking forward to the 2nd season. I do admire you so, so read MY LIFE SO FAR next. Feel like I know you better. Just read, with surprise, that Richard has Parkinson’s. it does take A LOT of study to understand it well–even for the doctors! Have now updated my Fonda videos to get back in shape after surgery. What fun! Let me know if I can help with PD info.

  5. Thanks, Jane. Very inspiring to me, a recently diagnosed person.

  6. CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION…LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU…BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS….
    STILL INTERESTED? READ ON!…(and no I am not selling anything!)

    I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.

    The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamet, though he had a lot of side effects from Mirapex and Artane.
    I was busy teaching Science and although I lived close, found it tough to find the time to help out….though I’d often come over on the weekends.

    Years 5-10 became tougher as you know…Sinamet was introduced in year 7 and really helped for a while…but in year 11 Dad got Aspiration Pneumonia…spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:

    The Pulsatile Theory of Levadopa Administration:
    What does this mean? It means the Levadopa (L-Dopa or “Sinamet”) you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
    IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET…INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.

    I did this with my Dad and it really helped! Read on…

    What does it mean? It means that when you take a tablet or 2 of Sinamet…the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias…

    So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you’d take just a a little BEFORE you normally would…and the second just a little AFTER you normally would…about 15 minutes apart may work (AGAIN…ASK YOUR NEUROLOGIST FIRST!)

    WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low….then the second tablet can later “Buoy” up the dose level, BUT avoiding a sharp spike.

    My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended “off” periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart…
    HUGE DRAMATIC IMPROVEMENT….70%-80% BETTER IN ALL AREAS

    I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad…and shrugged their shoulders and said , “Well, 12 years with Parkinsons….and….what can you do?”

    I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.

    Though my father’s has it tough, at least this has eased his discomfort some…
    REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING…IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET…PERHAPS…
    Again Ask your Neurolgist…BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS…BE RELENTLESS….OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU’LL MAKE PROGRESS

    Good luck…I hope this helps someone….in the name of my Dad…Ed
    Love ya Dad…

    Steve

  7. My husband was misdiagnosed with PD in 2000. Very rapid deterioration and many queries eventually led to MSA (Multiple System Atrophy) diagnosis. A horrible, horrible condition robbing people of independence, dignity, movement, speech, continence, ability to swallow and breathe.we didn’t know what to do we tried everything possible medically, we were waiting for his death then one day our daughter got back from work with the email of a herbal Clinic saying her friend from work told her about a testimony on how Health Herbal Clinic cured her mom from PD and it truely worked, we were desperate and sceptical but my daughter told me we got nothing to loose and i decided to give it a try. 4 weeks after he started taking the herb he regained his speech and today my husband is fully rocovered from this deadly disease called PD, this isn’t a BS it is real you can also contact health herbal clinic on healthherbalclinic @ gmail COM

  8. Thank you for sharing this, Ms. Fonda. My husband would agree with you about spouses needing to learn all they can, as well as giving reminders about medication. For awhile, I swear, the only way he started a conversation with me was to say, “Are you up on your meds?”

    Yoga has been one of the best therapies for me. The next best therapy is dancing. I was lucky to find a wonderful lgbtq square dance group in town. Not only is it great therapy – physical, cognitive, social – they are also the most open and welcoming people I’ve ever met. It can be hard to feel comfortable in public when I sometimes slur my words or have sudden involuntary muscle movements from my dystonia. Maybe it is because the people in this group have struggled with how others may see them, they are amazing. They don’t mind that I have PD, they don’t mind that I sometimes get teary, they don’t mind when my muscles jerk or I do my involuntary pliés; we just dance.

    Everyone find what works for them. I’m glad Richard has a wonderful supportive partner. That makes a huge difference!

  9. My wife was diagnosed at age 64 with Parkinson’s disease. she was put on Senemet for 6 months and then Siferol was introduced and replaced the Senemet. During this time span she was also diagnosed with dementia. she started having hallucinations, lost touch with reality. Suspecting it was the medication I took her off the Siferol (with the doctor’s knowledge) whcih i started using a natural herbal products. she has improved dramatically.
    contact: https://totalcureherbalfou5.wixsite.com/herbal/contact
    [email protected]

  10. After my Parkinsons Disease diagnosis, i was on Carbidopa and Pramipexole for two years, as the disease progressed my symptoms worsened, with my neurologist guidance i started on natural PARKINSONS DISEASE TREATMENT from Rich Herbs Foundation (ww w. richherbsfoundation. c om). The treatment worked very effectively for my Parkinson’s, most of my severe symptoms simply vanished within the first 3 months on the treatment, i feel better now than I have felt in years and i can feel my strength again. My neurologist was very open when looking at alternative medicines and procedures, this alternative parkinson disease treatment is indeed a breakthrough.

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