PD by the book may be wrong

PD by the book may be wrong

Many people who do not have PD have told me what PD is. It started with the first Neurologist I met and continued with many of my friends,other doctors and association members. The Neurologist was comfortable with the standard definition he learned in school and my friends went to the web sites of PD Association and major clinics and teaching hospitals . The descriptions and lists of symptoms are almost identical to the degree that some might almost see some plagiarism going on here. The Government has cut back on the amount of pain medication they will pay for because as my Neurologist, Motion Disorder Specialist and MD have said there is no pain associated with PD and similarly sleep problems are not caused by PD but are instead a side effect of the medication, it says so in the book. Neither of those understandings are correct.

You23andme has several thousand members that have PD. The first thing we did upon joining was to fill out extensive surveys. The result of those surveys gave the information to produce the chart shown here . The chart shows the relative importance placed on various symptoms by thousands of Diagnosed Parkies. You will note that it is pretty much the opposite of what you have been told

Personally I am tired of anybody who has not suffered from at least 10 years of actually having been diagnosed with the decease him /herself telling me what it is all about. They do not have a clue. The result is that we have an unending line of people with PD asking what is the cause of their sleeplessness etc. getting answers that are wrong, from people who are convinced that they know best.

It is time we all spoke out. I will show the chart to my doctors and we will have a discussion and I may be looking for new doctors soon. But enough is enough. We are not stupid or addled or demented. We just look that way. Now open and close your hands as fast as you can, now look up, now look down, now walk to the door,turn around and come back, now I am going to push you from behind. What you need is a sound machine beside your bed. If you exercise all day you will be cured.

Crap , it's all crap.

48 Replies

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  • Great article GymBag. The graph too.

    I burst out laughing when you ended with 'if we exercise all day, we'll be cured!

    Thanks for sharing your thoughts :)

    Love and hugs from Eva G.

    :)

  • I always feel like I am looking through the key hole at you looking through the Keyhole. Thanks for the kind comments.

  • What I don't understand is why it makes any difference if sleep disorders are caused directly by PD or by the medication. Anyone with PD suffers from it and that should be recognised by the neurologists and the government should assist with any payment for medication for the problem.

  • Any one who assesses non motor symptoms in pd in clinic will pick up sleep issues and usually try to find the route cause and treat it. Dehydration medications running out over night causing broken sleep. People sleep in the day need less sleep at night. Rem behaviour disorders rapid eye movement sleep. Restless legs at night. Off pain at night and so it goes on. All treatable symptoms but unless a clinician is aware of these symptoms and of these symptoms are reported in clinic then they can't treat them or improve the sleep status.

  • If non motor symptoms are assessed before the next patient comes in. NEXT

  • The problem is not so much who pays for it as much as getting a prescription in the first place. Every Dr. says the same thing. There is no pain associated with PD. Look at the PD web sites and try to find the word "pain" and then ask the Parkies here and you will get similar results to the graph.

  • Hi I saw my dr 2weeks a go and she told she did think the pain in my right leg was due to pd as pain is not associated with pd , I saw my consultant last week and he told me you do get a lot of pain when muscles are contracting and I also take medication for the chronic pain I get from my nerve.My best time of day is in the mornings and I suffer more as the days goes on.muscles and joints causeme a lot of pain .I have read Johns book and I found it very interesting and helpful ,I up to 20 mins a day walking

    my husband goes with me because I have had a number falls I have found that exercising at home as well I sleep a lot better at night kind regards

  • Hi Aunt Honey

    Your experience is same as mine. Better in the mornings. In my case that starts at 5 am . But the falls you talk about concern me . You may be more flexible due to the exercise and are probably learning how to hit the ground with minimum damage but sooner or later you will break something and that can be very bad, serious. I use a cane , not for walking but to keep my balance when I am standing still.

    You must have a zero falls attitude. A broken hip can be life changing and last forever. Sorry to lecture. You are correct, Exercise helps sleep, constipation and many other things bloating........

    BUT Why are you falling??????

  • Hi again, In our support group of 25, some fall often, and most of us fall every now and then, we have had some serious falls, I think it's par for the course. Right now 2 are in hospital with broken hips. Balance problem

  • they should live with is for a week or a month . Wear our shoes . . john can't speak all day but last night was buzzing me and calling toilet first next what's the time a dozen times , The next was , Who did I think might win the election . I can tell you at three in the morning I don't give a fig lol

  • Amen. Recent Research suggests even more. Dr Ted Kaptchuk (Harvard) has researched the doctor patient relationship. He has found that the belief of both the patient and doctor regards the outcome are critical.....that is even predictive. Said in another way, if your doctor expects your PD to have a better outcome such as delay the development of mobility symptoms, or to adapt more successfully to them when and if they occur........much more likely to be the outcome compared to a doctor who believes you cannot delay outset or that PwP do not adapt well.

    Given an individual doctor patient relationship, most Patient success, comes when Patient experiences Compassion from Doctor, has Trust and Hope! Actually Dr Kaptchuk, proposes that the relationship itself is healing (a kind of placebo).

    In the research, this was measured by a series of relationship variables..... Notes from Ted Kaptchuk Compiled by myself.......

    Placebo (healing ritual) is embedded in provision of Care.

    oWhat does the ritual of medicine provide people? (in terms of Placebo)

    oOr what does the Doctor/Patient relationship provide? (again in terms of Placebo.

    Mechanism and implications for the Rituals as Placebo are stunning! They can be taught!

    oPlacebo provides Compassion, Trust and Hope.

    oThe Ritual of Treatment, itself, can be a Placebo

    Components of this ritual Placebo

    oAttentive listing…..repeating the words the Patient has used.

    oLooking at the Patient in his/her eyes.

    oExpressing Empathy.

    oFeeling connected to the Patient……to the serious questions in their lives.

    oExpress confidence in outcome.

    oTouching the Patient physically.

    oBeing taken care of.

    This set of Provider behaviors was determined through research conducted by Dr Ted Kaptchuk.

    Can image how Patient outcomes impacted if ….he or she

    Feels heard, understood by Provider...... believes engaged with him or her

    Has undivided attention.

    Feels Cared about in the their circumstances

    Recognizes Provider is confident in outcome.

    Feels being taken care of in their situation

    Seems to me that his findings are important. Seems like more emphasis should be put on this healing ritual.....in medicine, less on rigorous method. The scientists' method doesn't like placebo. Have they also got something against healing?

    Apparently, if they cannot attribute it to a pill.

    It is almost like what is needed is the evolution in healthcare of…..a (new) state of being or a healing state of being involving the merging somehow of Provider and Patient in a way that is a necessary prerequisite for the healing to take place. Thus creates the necessary potential for change. The effect being within…..

    I personally take this seriously.......believe it ties to the post I am commenting on.

    BillDavid

  • I am a retired PT. I had a very successful private practice. My patients frequently referred to me as their doctor which I would respond to by stating that I was not a doctor but rather a PT. A very common response was "you are a Doctor to me".

    I always felt it was because I intuitively possessed the traits that you have listed.

  • Thank you

    well said and constructive

  • My hubby did this assessment for 23 and Me. What he put down as severity of symptoms for himself is not reflected in this chart. All of the problems that go with PD are life changing, and several of them can be life threatening. You are right exercise id the answer, just don't swallow of freeze, or lose your balance and fall while you are exercising. Ha.

  • that is so very true, no pain with pd????????????????? guess you have to be in one's shoes to feel it. we pd people know our bodies and that is why I'm Dr. Lake

    Alice Lake

  • Ditto, ditto. I agree with you. Since I was diagnosed with Parkinson's I feel like a student pilot up on a solo flight. I don't know how to read instruments and the weather has socked in. I've lost radio contact with the control tower.

    Where is "depression" on your list? What about mental/cognitive deterioration (experienced or anticipated). Supposedly these items are most feared by PwP.

    Certainly tops my list. Not worthy of mention?

    I consider input that I get from other PwP's, even though it is highly subjective and based on "the experience of one" far more valuable and credible than what I hear from MD's.

  • FMundo Depression, mental/ cognitive deterioration or the fear of either were not on the questionnaire as things you could comment on. I have noticed that those subjects are generally avoided and do not generate much discussion. I think that no one wants to hear about it or acknowledge it. Yet depression is the most feared and most terrible of the symptoms and I believe that it can be avoided or treated if caught in time. We set our own agenda here. Start a string and discuss it . It is time somebody did. EDIT: OR MAYBE NOT

  • Where HAVE you been? Yahoo, someone with the guts to say it like it is!

  • No he was probably just having a bad day, frustrated and feeling sorry for himself , was taking 2 celebrex a day and the govt. and DR. cut it down to one a day. I would gladly pay for it but pharmacy is giving me a hard time and Dr says that I have been on two a day too long, miserable, grumpy, difficult to move, awake all night and no use complaining to any one . You know typical day in the life.

  • I am seriously considering getting a new PD doc. Mine extended my appointment with her after three months since the last visit, for another three months because I missed to call transportation one day late. So in other words, it will be 6 mo before I see her again.

    When I ask her about a symptom that I don't know is PD or not, she gets irritated and ask me to see another specialist.

    It is time for me to do myself a favor and get another doctor!

    Make this a great week!!

    :)

  • IT SURE AS HELL SOUNDS LIKE IT !!

  • Hi 12Stargate, curious to know if you changed doctors? The doctor that diagnosed me was no good at all, I only saw her twice. Now have a fantastic neurologist!

  • Hi Bluejeans;

    I have not done it yet. I am in the process though.

    Lovingly, Eva G

    :)

  • Well said! I especially enjoyed the ending. It gave me the best laugh I've had in a while. Thanks for sharing. :)

  • Interesting post, my gran has parkinsons and certainly feels pain from her stiff muscles along with her arthritis.

  • Hi GymBag. I agree on most things you have said, especially about sleep. I have not taken any Pd medication for the last 13 years, but it is 4-30 am and I have been up for over half an hour, and that happens every day! So insomnia is not a side effect of medication!

    But when you eventually realize that you CAN CONSCIOUSLY control your movements, particularly walking, and you CAN do FAST WALKING and you CAN produce GDNF in your brain, which DOES repair the damaged BRAIN CELLS, which CAN get you to the stage where I am at, which is LIVING A NORMAL LIFE AGAIN!

    John

  • Hi John;

    I was waiting for you to say something. Because, honestly GymBag, even though I laughed at the end of your post, your post frightened me. I felt hopeless after i read it. There is no cure for pd yet, but there are things to do to keep comfortable.

    My regimen still is to work up to what you are doing John, and that is the 1 h walking at a fast pace. I am working on it with my pedometer in my iPhone.

    My main issue is lightheadedness. My blood pressure this morning was 97/56. i am taking meds for irregular heartbeats, and that may be the cause of the drop in blood pressure and lightheaded.

    I am calling my GP and neurologist shortly.

    Hugs, Eva G

  • Hi Eva. Not being a doctor I am unable to give you any help with the BP problem. I know how debilitating it is when you feel light-headed. I get a similar feeling when my Menniere's gives me problems. I have to sit down before I fall down! Not Nice!

    Get your doctor's help and see what you can do in order to get fit, as that is the only way to get the walking up to 1 hour at a time.

    Good luck!

    John

  • Thanks Gymbag for starting this post. I am suffering from severe pain from my hips down both legs into my feet. Have had numerous scans which show some damage so have had steroid injections. I have always believed this pain is associated with my Parkinsons. However, this view is not shared by my Doctors. At last, it appears that I am right. Thank you for your comments. I took part in the 23andMe questionnaire. I rate Pain with Parkinsons as being one of the hardest things to deal with in my every day life.

    It takes people with Parkinsons to understand the many problems associated with day to day living. Thank goodness for this Site where we can help each other.

    Sue

  • pops007's wife

    My husband was dx 13 years ago after "something" went wrong during a shoulder op. He walked out of the hospital just fine, just to have his body go in shock three days later and from the next day on he couldn't walk. We've been to all sorts of doctors, specialists, wannabee specialists, alternative doctors, etc, etc. What GymBag is saying is absolutely 100% what we have found as well. Doctors just don't know what they don't know. They read books and attend conferences, but not one of them has actually got the disease themselves. As for pain, my husband suffers a lot of back and hip pain especially during the night. And as for exercise and the "fast walking". Please John, get real. I honestly wish you could spend one week with my husband and see how he can do any fast walking. I'm sure it may work for some, but it is certainly not for everyone.

    Parkinsons is a bugger - no matter which way you look at it. And it has many faces! Symptoms seem to come and go as it pleases. It also has devastating effects on the partner/carer's life. It's not easy.

    We try to stay positive by taking it one day at a time - and also trying to not be too serious about it.

    Smile, patience, love, faith and hope

  • "We try to stay positive by taking it one day at a time - and also trying to not be too serious about it.

    Smile, patience , love , faith and hope"

    so what your saying is I am feeling sorry for myself and wining and complaining too much. OK you' r right.

    Say hi to Pop for us.

    THANKS

  • I met with my Movement disorders specialist via the medical television network this morning. He said that I should talk to my MD about fiber mialage because there is no pain associated with PD and he cut me of as soon as I started talking about surveys. He was not interested. He suggested that I reduce the Ropinarole to reduce the drowsiness during the day to improve my nights sleep and it was obvious he thought that I was not trying hard enough to sleep through the night.

    I think he is a very knowledgeable Doctor but he is very busy and he and I just do not fit and that is the end of that and this post.

  • Gymbag...... get a new doctor, or a 2nd opinion! Keep that chin up! :)

  • 12stargate posted

    Hi John;

    I was waiting for you to say something. Because, honestly GymBag, even though I laughed at the end of your post, your post frightened me. I felt hopeless after i read it. There is no cure for pd yet, but there are things to do to keep comfortable.

    My regimen still is to work up to what you are doing John, and that is the 1 h walking at a fast pace. I am working on it with my pedometer in my iPhone.

    My main issue is lightheadedness. My blood pressure this morning was 97/56. i am taking meds for irregular heartbeats, and that may be the cause of the drop in blood pressure and lightheaded.

    I am calling my GP and neurologist shortly.

    Hugs, Eva G

    Yes you are right lets stop this post

    and try something a little more light hearted next time

    Sorry Eva

    GymBag

  • It''s ok gym bag.

    We all have days we feel discouraged.

    You are the best :)

    Hugs, Eva

    :)

  • Daytime sleepiness, Chronic Pain, Fatigue and trouble sleeping through the night are all symptoms of low Vitamin D Levels.

    Couple that with a study In Finland, which found that higher vitamin D levels were associated with reduced the risk of developing PD by two-thirds. This result was noted at a 29-year follow-up.

    To top it off, supposedly up to 90% of Americans are Vitamin D Deficient, especially if you live in the higher latitudes that get less sunlight.

    I give my 80 year old father in law, who's been suffering from PD for 15 years 20,000 IU of Vitamin D3, along with 45mg of K2 to avoid any calcification issues and it's definitely helped his Daytime Sleepiness issues, along with lowering pain symptoms.

  • I live in a land where the snow comes to stay in November and finally leaves in April with mostly cloudy sky through out that time period. Any clear sky during most of that time only serves as an indicator that it is very cold outside.

    I feel much better in summer but assumed it was because I was getting more exercise. So maybe my friends were correct. We should have spent the winter in Arizona. Vitamin D I just looked in the medicine cabinet and there are lots of different supplements ( I do not take any) but I can not find any Vitamin D. I will look up what the D3 means and what K2 is.

    I am on it. Buying some first thing in the morning.

    THANKS That made this string of posts a lot more positive

    If you are old enough and in North America you might remember the Li'l Abner cartoon by Al Capp in which some times they would take you to a country called Lower Slobbovia where people and polar bears stood up to their necks in snow. That's where I live.

  • Wisconsin,Michigan or Minnesota? :)

  • No no, The big land of ice and snow. Look north.

  • D3 is the form of Vitamin D that's most absorbable in your body. D1 and D2 are not quite AS absorbable. Personally, I like the Health Resources Brand because it's GMP Certified, Pharmaceutical Grade, has 5000IU per capsule, yet is still fairly inexpensive on Amazon. Most of the others that meet those standards are around $30.00. Most supplements out there don't even have 1000IU and considering that in the summer, your skin will creat 15,000IU in 15 Min. anything less than 5000IU is simply not enough.

    Some old school doctors will tell you it's too much because it might cause Calcification, but new research shows that Calcification is a K2 deficiency problem, not a "too much D" problem. You can get K2 from fermented products, like Natto, Yogurt, Fermented Cod Liver Oil and Animal Organs or Grass Fed Beef (regular beef - usually growth accelerated via Hormones, is slaughtered too young to absorb any K2 in anything other than their organs)

  • GymBag ...... ok, so after reading this new post of yours, I say MOVE, then find a new doctor!! I live in South Africa and cannot imagine Sun restrictions.... we have sunny summers and sunny winters! I've seen snow about 3 times in my life and the deepest about three fingers deep! Move!!!!!

  • Canada?

  • I finally see that I have come full circle in my opinion of how to best treat this disease. I used to say "do not follow advise with out first checking with a professional.

    Now , I am a little frustrated expecting the Professionals to actually listen to me. That's not what they do, they talk, same words different month. nothing changes. I need them as a source of prescriptions.

    I am taking over this patient's care right now.

    I will double my efforts to exercise as suggested by John, I will obtain and take vitamin D3 and K2. as suggested above by Rejuvem The information on this is incredible.

    I will purchase and use a Basis Peak watch and analyze my routine as suggested by JUNEBUG56 and I will keep reading this forum. No criticism, more optimism and I will show the same patients that every one has shown to me, and I will be happy as suggested by someone a long time ago. Now I will lurk for a while and read .

  • interesting. I will watch for your reports, successes and failures.

    I have tried most everything else (no mary jane / no Indian herbs) and now, I am on the exercise routine and watching for any substantial decrease in symptoms. If I only knew what change is a result of exercise or the normal progression.

  • I find I have to really force myself. It is very difficult

    the benefits are visible the next day and increase each day

    it is that quick

    but it hurts, I understand that over a long time that the pain diminishes. (NO pain No gain ) does not just apply to weight lifting.

    Others can tell you better many kinds of exercise.

    I have not done a rigorous training routine in 40 years and back then, sleep, eat, train and play the game took up all my time. Can not do that now but I will do what I can.

  • Hi RoyProp I did obtain the Vitamin D and the K2 and took it faithfully for a few weeks and then the sun came out. Summer glorious summer. I quickly tanned and starting being outside as much as I could so I discontinued taking the vitamin D. I am now told that I should take it all year round and I am looking into that. Exercise opportunities abound in summer. I still have not signed on to a regimented ,exercise programme, and will leave that to September. Just walking can be exhausting and of course now if I get too tired my toes start curling under. A little twist thrown in by the "Fates" to fully screw up the situation. It turns out that I do not any longer have any ability to force myself through a weight lifting, or similar programe , no stamina. I think I will look for a professional trainer or something.

  • LOVE IT GymBag!!!! I run support group and we have +- 24 Parkies, we are all different, both symptoms and reactions to meds, BUT if I got a chart going of our complaints, symptoms etc. it would look exactly like the one you've posted. I am of the opinion that dopamine is not all that's it's cracked up to be, I've been a Parkie for 6 years, my sister for 15. She took dopamine from the start, and is now totally dependant, and is in a very bad state, tremors, dyskinesia, pain, cramps, sleepy during the day, can't sleep at night, constipation, slurred speech, bad balance and gait, falling, swallowing, speech etc etc. I am not on dopamine I only take selegiline, and six years in I'm MUCH better than she was at 6 years! I exercise (Yoga) twice a week, and TRY to walk three times a week, which I am very good at avoiding. My Neurologist wants me to start taking carbilev, I tried, I made me so nauseous I stopped after a week or so. My shakes are slight and in my right hand only, I'll just put up with a shaky right hand and hold my wine glass in my left!

    I read somewhere that in the sixties they did a medication trial/test on 6 PWP's, two improved 80% and 4 recovered completely, completely PD free. then recently the same meds were tested on a vast number of PWP's and NO ONE improved even slightly. I'm not sure I've got the numbers correct, or who did it, I seem to think it was Fox, but the story is this. Now, is it that the pharmaceutical companies are not happy to 'cure' anything, they will lose out big time! Is it just "don't believe all that you read"?

    I was diagnosed in South Africa, but was told in Europe that I don't have PD, because I don't fit into the description in the book!

    We've got this flipping curse, and I can't see light at the end of the tunnel, it shakes around too much!

    GymBag, if you haven't already, read John Peppers story, he has got a blog and a web site. I was fortunate to meet him at a talk that a Canadian doctor, Norman Doige, was giving in South Africa, it was soon after I was diagnosed and I'm following his theory of no dopamine. BUT it's too late for my dear sister, she cannot do without it!

    Cheers!

  • So funny! The routine check!

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