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    • #16677
      Garrett McAuliffe
      Participant

      I am wondering what I can realistically expect about my future.I was diagnosed 10 years ago, and in the past year my symptoms have noticeably increased, including 12-15 hour episodes of being severely On, with massive tremoring and other symptoms that last all day. Then I see Michael j. Fox acting, going abroad, and looking quite functional in his 25th year. What is he doing? Everyone else I know or hear about has had to retire from work, sad and discouraged, often from work they love. I know of no case like Michael’s.
      I am still working as a university professor. One advantage I have is that I can often work from home with flexible hours. But i teach demanding courses, supervise dissertations, run meetings, and much more. I am not always at my best at this ten-year point, but i am doing justice to the job expectations. I want to work ten more years. Can I?
      Does MJF just put up with a lot of dyskinesia in order to function with fewer symptoms? Maybe that’s the key. I would love to hear from others on the topics of working for many years with significant PD. Does anyone know how Michael does it? Is my plan realistic? Does it just take the right job and bullheaded determination to do a job while significantly disabled by PD?

    • #16678
      Jean Mellano
      Participant

      hi garret, thanks for posting such an interesting topic.  it took me a while to find since it is in the ‘using our forums’ posts.

       

      i was diagnosed in 2015.  i have no answers, but do have the following observations:

      1.  everyone with pd progresses at different rates.   there is no way of telling how one will progress.

      2.  attitude, socialization, diet and exercise are our best weapons for fighting this disease.  I believe MJF relies on these ‘therapies’, plus it seems as though he has an excellent support system.

      3.  i believe living in the moment and being thankful for what i can do is critical in keeping the pD beast tamed.  some days are easier than others.  have you considered yoga or meditation?  if i go down the rabbit hole of where i will be 10 years from now, i will never come out.

      4.  i am also finding that we may have to deal with one symptom more  to relieve another …. ie… if i increase my levodopa too much to alleviate the bradykinesia,, i end up getting dyskinesia… choose your poison.

      i blogged about acceptance, attitude and gratitude and frequently must go back and re read it to remind myself…  https://slippedawayblog.wordpress.com/2018/02/26/acceptance-gratitude-and-attitude/

      keep working and hang in there..

       

    • #16684
      Dan Freedman
      Participant

      Everyone seems to react differently, not just to the disease, but to the medications and their inevitable side effects. I think it is important to recognize that you may well have a neurologist, a family physician, and maybe some others, but … you are your own doctor. Only you can directly assess the nuances of the disease and the meds, especially non motor symptoms such as apathy, lack of motivation, depression, and so on. The disease, and also the meds, affect our mind as much as our body. If you haven’t already done so, it might be good to acquire a second neurologist, for a second opinion. One way to do this “on the cheap” is to volunteer for a clinical trial of some kind. You’ll be well poked and prodded, and it won’t cost any money (only some time), and you’ll learn a lot from all the researchers involved with your study.

      I’m not sure if this will be helpful to you, but it has been helpful to me. I treat PD as a new partner in life, or a new room mate. One I cannot get rid of, but we can accommodate each other. When during the day/week/month do I want my best times to be? If I’m getting up in front of people, should I slightly over-medicate to reduce shaking, or slightly under-medicate to increase clarity of thought? These are the kinds of realities that PD patients face, and both you and I are among them.

      You ask if you can reasonably expect to continue with your profession? I’d say: do it as long as it feels worth doing, but have a backup plan in place for what to do it you decide you can’t continue working. The stress of worrying about “I can’t continue but I also can’t stop” will make all of life worse, including PD, since stress brings out the symptoms.

      Final thought: There is lots of research happening now. When I was diagnosed 3 1/2 years ago, I felt that within 5 – 10 years, symptom progression would likely be stopped. I still believe that. But on this forum, I bet there are people who believed that 5 – 10 years ago, and yet here we still are. At best, we’re all going to have to deal with the same kind of uncertainty that you are expressing in your post, for a while longer.

       

      Dan

    • #16686
      Jean Mellano
      Participant

      well said Dan

    • #16692
      Tina
      Participant

      MJF has an implant I believe and also underwent deep brain stimulation before that. He’s so involved in finding a cure with having set up his foundation and actively operating it with getting funding, research etc. I’m sure it must affect his outlook on a daily basis as well as long term in a positive and realistic manner.

      He’s also had early onset PD and has been dealing with it for many years longer than a substantial amount of PD patients just learning to understand and cope with their particular version of PD like me.

      In my particular case I’ve found that acceptance of my new level of “thriving” follows the initial shock, denial, anger and sadness at each new door being opened on my PD journey.

      I’ve had a very fulfilling professional life before my PD diagnosis, and continue to do what I can to entertain interest in my former field. However, some days I have to take a day or two off just to allow my mind to rest, and it usually doesn’t take 5 days to reach that need.

      I’ve learned that my worse symptom days occur or follow some new stressor that I’ve encountered or tried to overcome or accept.

      It’s definitely a challenge dealing with this disease and deciding how and when to share the next onset of symptoms with loved ones and others.

      Confidence in myself however, gives me ultimate control in  how I choose to react to things after I allow myself to get over the next “shock of the new”.

      I hope for the best for others dealing with this terrible set of symptoms. I encourage them to set appropriate short term goals and adjust their path on a weekly, daily and hourly basis to “keep the peace” in their body, mind and heart.  This goes a long way in helping to deal with disease symptoms as best as can be done along with medication, sleep, diet as well as healthy habits and hobbies.

      It’s not easy to deal with PD for anyone, but nothing I’ve ever done has been easy, so I look at it as my personal success story that may somehow encourage others.

      I do have to additionally give credit to meditation and prayer as the mainstay in keeping my balance in offsetting the challenges of PD and other medical conditions I’ve been dealing with for many years.  Enjoying nature and laughing with others rounds out my daily plan for coping with PD.

      I don’t know how long I’ll be fighting this battle as I have other conditions far worse on a daily basis. But I’m grateful for each day and consider it an inestimable gift to spend more time with my kids and know that I’m teaching them important life lessons of how to deal with adversity with dignity, grace and endurance.

      Such traits can be hard to develop in this world of instant gratification. I’m happy that I’m able to have an opportunity to still have a substantial impact on my adult children’s lives.

      My personal goal is to make it to the birth of my first grandchild in April and see this little girl come into the world to replace my efforts anew. I’d like to be around long enough to introduce her to the Grand Creator who’s enabled her to enjoy life as I’ve had. We’ll see if I get that opportunity! You never know. Life’s a gift every day to enjoy!

       

    • #16714
      Jean Mellano
      Participant

      tina, words of wisdom.  i believe you are dealing well with the cards you have been dealt and  you are on the right track… acceptance, attitude and gratitude

    • #16724
      John Humphreys
      Participant

      Tina – great post. These are great words of wisdom. I’m going through a rough patch at the moment and being distracted by grandkids or in a Rock Steady Boxing session helps me live in the moment and keep the black devils of depression at bay.

    • #16726
      Dan
      Participant

      Tina – let er buck. good post. brightens my dimly lighted pathway just a bit. God is my rock. My wife is my life. Together the three of us will go find the rest of the story….

       

    • #16727
      Dan
      Participant

      If it is possible to have  bradykenisia and dyskenisia at the same time, I have it….one fights with the other and my two dogs maul the winner.  my newest symptom is severe throat constriction. brings on headache. can’t speak, swallow. oh well. for every symptom, there is a equally miserable person that has that and worse. And I’m have freedom. It 16 deg f outside, think I’ll bring in more wood….

       

      • #16766
        Jo S.
        Participant

        Dan, I have that throat constriction going on too! I’ve been calling it “dry throat,” but I think it’s more than that. It’s very difficult to explain it to someone else (who doesn’t experience it), and I haven’t found any remedies to help ease it. All I can do is suck on a lozenge for dry mouth. Have you come up with anything that helps? Have you spoken to your docs about it (and, if so, did they have any advice)?

    • #16729
      Jean Mellano
      Participant

      dan, i too suffer from bradyk and dysk… try and explain to someone how that feels…

    • #16732
      Russ Hudson
      Participant

      I’ve posted this before. I self-diagnosed myself in September 2018 (I had 7 out of 10 of the symptoms). I then Googled for the latest treatments for Parkinson’s, and found articles which told of the benefits of Butyric Acid supplements. I take 12 pills a day, six in the morning and six at night. Not only has my PD been stopped, but it’s been reversed as my brain has healed.

      • #16757
        Andrew L.
        Participant

        Hi Russ: Congrats on reversing your PD, there is very little about this in the literature. I have some questions for you:

        1) Did you do this treatment on your own, or are you working in conjunction with a doc (if with a doc, is it a neurologist or internist?)
        2) How did you decide on your butyric acid dose?
        3) Which brand do you use?
        4) Do you take dietary fiber and any other prebiotics or probiotics as well?

        Many thanks and Happy turkey day, Andrew L.

    • #16733
      Jean Mellano
      Participant

      Russ, thanks for sharing..  indeed, there are some articles that reference butyric acid and Pd, here is one of them:

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6595503/

      as it is with pd, we all react differently to different therapies.  I am happy this has worked for you.

       

    • #16735
      Marlene Donnelly
      Participant

      I found all of the above comments on target, especially Dan’s and Tina’s.  I take to heart the concept of acceptance, attitude, and gratitude – it certainly puts things in perspective for me.  I have had PD for over 9 years, and I found that my second and third years were probably the roughest – symptoms were increasing and I hadn’t yet started dealing with each symptom as something that could be lowered in intensity.  For me the most important thing has been going to weekly T’ai Chi, Yoga, and Lite and Fit classes.  I have always been more the bookworm and couch potato, but these classes have turned everything around.   Besides the exercise that has made a huge difference (example: before T’ai Chi I took some really bad falls but haven’t done that in years now), I have new circles of friends who have made my life much more pleasant.  Secondly, I am blessed with wonderful doctors who all communicate with each other.  I am confident I couldn’t be in better hands.

      An experience I had beginning in September illustrates what I mean.  I was feeling more and more fatigued and assumed that both my PD and my Fibromyalgia were the cause so I would have to live with it.  Then I started getting dizzy, and to make a very long story short, I found that my heart-rate was, on occasion, dropping lower and lower, even pausing for over 6 seconds at one point.  I had a pacemaker implanted, so now the rate will not go below 60.  On coming home from the hospital, I got a call from my primary doctor’s office because she had a concern about the dosage of one med I was given, and she asked me to call my cardiologist, who agreed that the primary care doctor was on target and changed the dosage.   For the month after that I felt exhausted and in pain, not from the surgery but from the PD and Fibro.  I was wondering if this was going to be my “new normal” in a negative way.  Then I got calls from people in my classes who were concerned because I had not been there.  They all encouraged me to show up, even if I couldn’t do everything.  Well, I am back to all classes and feeling better than I have in a while.  This would not have happened if I hadn’t gotten a push.  PD is different for everyone, and we all have to find what works for us.  Looking at the negative is scary – so I don’t!  There is so much research going on, so I look at the positive.  I have nothing to lose by doing this.

    • #16743
      Jean Mellano
      Participant

      To all who responded, excellent responses.. thank you so much for sharing your thoughts..

    • #16744
      Tina
      Participant

      Marlene I like what you said about looking at the negative is scary so don’t do it. I had a friend call me and after listening to my latest negative medical finding, said “ok and what is your recent positive?” I was instantly reset to my usual positive mindset, for which I was grateful.

      So I’m going to add this to my mental phrases I use on myself, like “this too shall pass”, “it’ll be ok”, “you’re doing good”, “that was funny”, “that was a close one”, and my go to “stay calm”. I plan on typing a list of them and framing them to hang in each room.

      You know how people say they can’t remember why they came into a room? Mine is “it’s ok to leave. You’ll figure it out next time!” so I guess I’ll add that to the list too

      • #16765
        Jo S.
        Participant

        Those are such great “self-talk” phrases, Tina. I need to use more of those more often. Thank you for the reminder!

    • #16746
      Jean Mellano
      Participant

      tina, i love your post, especially about “it’s ok to leave. You’ll figure it out next time!”.  i got my chuckle for the day!

    • #16747
      Garrett McAuliffe
      Participant

      To all who responded to my initial post. It is inspiring and heartening to hear your words. I want to add an important discovery that I have made. My extended episodes of tremors, involuntary movements, and feeling “speedy” I think are related to engaging in a stressful task when I am feeling a return of symptoms. Even driving at that point. Instead I have intentionally paused to meditate or relax at that point. It has made a difference. Somehow jumping into activity, even if it is merely concentrating on a work task at the computer, revs up my symptoms so that they go on overdrive! My mantra is “No two activities in a row!

    • #16748
      Tina
      Participant

      Garrett, that’s been my experience also. Being someone who’s always managed five things at once, I’m down to half of one before getting “the shakes” as I call them. All I have to do is think of something and I become unable to do it.

      Hence, paying bills has become unmanageable. As a degreed financial expert with a storied career, it’s incomprehensible to me that I can still sometimes run numbers in my head concerning stocks yet can’t figure out my checkbook.

      Oh well. Just another thing I’ll be “delegating” to my kids…and the fun continues. I’m looking at this as my well earned early retirement. I only have to do the things that make me happy lol

    • #16755
      Jean Mellano
      Participant

      Garrett, stress wreaks havoc with my symptoms and certainly no more ‘multitasking’ for me, a difficult habit to break.  Now i must remind myself to focus on he task at hand and work on my breathing.  I am glad you found a technique to help you..

       

      Tina, I too struggle with balancing my checkbook now.  I try to minimize the checks I write and time payments so it is easier for balancing.  the simplest things we always took for granted can now confound us.

    • #16773
      Russ Hudson
      Participant

      Andrew L.

      1) Did you do this treatment on your own, or are you working in conjunction with a doc (if with a doc, is it a neurologist or internist?) I’ve gone to two PD docs, seeking a prescription for phenylbutyrate ( https://www.emcell.com/en/list_of_diseases/parkinson_treatment/news-and-articles-about/1659.htm). They wouldn’t prescribe it and pretty much blew me off.

      2) How did you decide on your butyric acid dose? I found this on Google (https://selfhacked.com/blog/butyrate-health-benefits/) Joe Cohen said he took 4 pills twice a day, which I started out with.
      3) Which brand do you use? I started with the brand referred to on this site (https://www.foundationalmedicinereview.com/blog/the-potential-of-butyric-acid-as-an-alternative-treatment-for-parkinsons-disease/) but then I found it cheaper elsewhere.
      4) Do you take dietary fiber and any other prebiotics or probiotics as well? Nope.

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