prepare for a dramatically worse progression of disease

Based on these non-motor (and some motor aspects), the most accurate way to divide patients was into three groups – diffuse (many non-motor symptoms), pure motor, and intermediate (halfway between the other). We then followed patients over time. The diffuse group had, by far, the worse prognosis. This was not only for the non-motor aspects, but the motor as well.

Most importantly, we can start to stratify patients into groups and predict their prognosis, based especially upon non-motor aspects of disease.

Not all patients are the same – if you are seeing mild cognitive changes, REM sleep behavior disorder, orthostatic hypotension and predominant gait dysfunction, prepare for a dramatically worse progression of disease, and be especially vigilant for cognitive changes.

medicalresearch.com/author-...

30 Replies

oldestnewest
  • I seek answers. I cannot accept, "each person is (affected) different".

    We (family) must prepare. Do I telephone my daughter and say in two years please drive a car and take me to shop, or in three years tend to me as I will be housebound. In four years I will require twenty-four hour caregiver.

    I seek answers. That article left me with more questions.

  • Keep asking the questions, and recall all the things you have done. Your job and hobbies ie. welders and hairdressers have the highest incidents of PD. The 'health' food fads you have had? how many antibiotics for minor ailments? how many vaccines? head injuries? stress? pharmaceuticals?processed foods? artificial sweeteners?pesticides?plastics{furniture, clothing etc}. Everyone looks for THE answer when there isn't one answer.

  • I do not seek the cause but seek the day-to-day, year-to-year prognosis.

  • The answers will be in the cause.

  • Caused by my diet. So, when will I need my daughter to be caregiver? What year into the course of this disease? :{)

  • OK. l'll put it another way. If i were to continuously bang my head on something, i could take paracetamol {tylenol} or the alternative method would be to stop banging my head. If you wish to wait for a prognosis. which are based on what the 'norm' is, then you will find what you seek.

  • Me too

  • Dear RoyProp;

    I hear what you are after, but why start your search with such a heading??

    Scared me at first glance!!!

    I believe in optimism. I belive attitude is everything.

    I believe faith will take you a LONG way towards living a very good life with any condition.

    Don't scare people. I do that very well all by myself!!

    I broke my right big toe last night. It is all black and blue and very painful. A friend told me it will be 8 weeks until I can speed walking again.

    Do I buy into that? And sit around eating too much, turning into a depressed whatever?

    No!!! There is a reason why this has happened. I will know as time goes on.

    Dear friend, why do you want to tell your daughter what to be prepared for???? None of us know how PD will evolve for each one.

    Are you telling your daughter you are doing your best to have faith and power to keep the illness from progressing?

    I believe that it will be done unto us according to our belief.

    I had to be frank with you RoyProp! Certainly you must be aware of the power of the mind?

    Lovingly and many hugs from Eva

    :)

  • I am very happy to have found this website and to meet all you wonderful people whom I now call my friends.

  • That is a direct quote from myself.

    I still feel that way.

    Including you:)

  • Right back at ya, my friend.

  • Ouch! Hope your'e toe gets better soon ;-]. You Eva, will do well. If you follow the herd and take or get 'put on' things that the herd gets 'put on' then the prognosis is a forgone conclusion. Hugs.

  • Thank you so much Garlinge:)

    Iappreciate you and the hug:)

  • There will always be another website, another new piece of research, another prediction pattern for different groups that will tell us that the end is nigh. Perhaps it soothes some people to be prepared for the worst. It soothes other people to subscribe to "The best is yet to come" school of thought. Here is a prescription (no side efffects guaranteed): play that song - the Tony Bennet version (although Frank does a fine job too) - and sway a little. Symptoms may lessen if appropriate dosage is consumed regularly.

  • Criminy! On that cheery note, I'm crawling back under my bed.

  • I choose possibility over probability. I choose to be an 'exceptional' patient which is a term coined by Dr Bernie Siegal who found cancer patients that outlived their prognosis because of a belief system.

    My Parkinson's nurses would agree with that as I'm not deteriorating as they expected me to. Instead I am in a minority which is where I chose to be.

    Royprop with all due respect, please do not imagine the worst but instead choose the best outcome. Your thoughts do create your reality.

    Love and blessings to you all.

    W

  • Well Royprop after feeling good that I have had only minor symptoms up to now after 5 years since diagnosis I should now be preparing myself for a train crash, however, have you read about the exciting announcement from Living Cell Technology, not like you to miss this one - lctglobal.com/ . Scroll down the page where they refer to their Parkinson research and trials. They will now move onto the next phase with an increased number of PD patients. They seem to be very positive but conservative with what success they have had to date. The 4 people who have been used in the testing claim the improvements to be life changing. I wish I knew how to get selected - it appears they only want people who are beyond help with standard medication.

  • Barry Snow the neuro specialist involved (who by the way is not an employee of lctglobal) works in Auckland Hospital. As the link shows this is an NZ research project. All participants are from NZ. The next phase they will probably look for participants at an earlier stage of PD. You could be eligible if you live in NZ Johnson.

  • Last year someone recommended a BBC Horizon 2014 presentation The Power of the Placebo. If you watched it you will remember it. Discussed a series of Experiments into the nature of Placebo, including the Vancouver Study where a Placebo was shown to be a replacement for Sinemet. Among the studies shown was the work of Ted Kaptuck from Harvard who studies the Placebo, One of the studies shown was the Doctor ? Patient relationship as Placebo.. He showed that the perception of this relationship by the Patient impacted outcome. In other words, given a group of PD patients, within the Group, belief by the patient that their Doctor cared for them, understood their situation and anticipated a positive outcome was predictive of the patient actually have such an outcome with the study! ONE'S BELIEF MAKES A DIFFERENCE.

    The bottom line, belief has an impact on outcome. This is one of the reasons that LSVT BIG is so effective. One learns that they can have control of their movement.

    Knowing that have some control of symptoms is incredibly encouraging.

    What is the point of this post? Noting that in the universe of all the folks who have PD, to some bad things happen. It is also a fact that many are outliers in the opposite direction, such as John Pepper, who is able to maintain the remission of most of his mobility disability symptoms. Bad things don't happen to them! I am going to spend my energy and expectations on being an outlier too. Joining the group of PD patients that good things happen to.

    BillDavid

  • Hear, hear

  • Yes, we can't give in to negative predictions. It helps me to take a day at a time and not dwell on the future.

  • Joanne joyce

    The distinction I am attempting to make.is that we can choose a positive outcome prediction. We can predict we will become an outlier like John Pepper. Our expectation will give us motivation and direction. Like being in the today, enjoying what you can do. As well as exploring on moving forward, like walking a longer distance.

    BillDavid

  • what will be will be . all you can do is your best .and keep singing . always look on the bright side of life dadadadadadadada .. ......

  • Or "Shake It Off"

  • Most of the replies I read indicate many of you must be in the " good group".... you can still be independent to some degree and may always be that lucky.... but don't doubt those of us who fall into a category that indeed is rapid digression....I am still in disbelief at how I could have been " getting along" ok just 2 years ago to needing a caregiver almost 24/7. I have a wonderful attitude, great faith...but I can assure you these attributes don't help me stand or walk or bathe. The Parkinson's Community will never have a chance of a cure or even better treatment options until all the false smiley faces have been removed from reality...my group's reality...I believe in Hugs and Love and Optimism...None have helped me stand or walk. I can barely move to type this...there will be no replies to any comments.... PD is devastating to many of us...don''t make light of it....That is why we are not getting the help we need. Everyone thinks PD is just a little "tremor" I hope none of you are ever on my path...the journey is too undignified for details . I wish you all well.

  • Hi Leilani, i think we all know that a progression can come swiftly. Some of us also know all the stages. All we can do is hope that it doesn't happen to ourselves or anyone else, but it does and we can only offer sympathy and i know it isn't of any use.

  • So sorry for what you are going through, Leilani. Your post reminds us that we must try to keep up the pressure for intensifying PD research.

  • Leilani54, Merry Christmas and .......

  • Ho Leilani54

    I am so sorry you feel so low ,, My husband is very advanced, either chair bed or commode bound . he also has carers three times a day has recently been accessed again .

    I came across an old photo of him which I have placed in the room so that the carers and myself can see the John he really is .

    even I have to be reminded now and again . so now and then when I am missing that old twinkle in his blue eyes , they were the first thing that attracted him to me ! I only have to glance at the photo.

    now when someone asks me how John is I say ok same as usual , or I could tell you the truth but that would only drag me dowN so I think most of us pretend it's how we cope .

    John gets I. With the card he is dealt with in the hope that one day a cure or at least more help with come for other who follow us .

  • cabbagecottage and John, Merry Christmas and hope that one day a cure or at least more help will come

You may also like...