In denial

Hi everyone I am now 56 yo, was diagnosed 3 years ago with PD but am just now thinking ok maybe they are right so far tremors in my left leg and left arm. My family is supportive I have a good neuro from Cleveland Clinic I do have an ideal what life could be for me I have been an LPN working mostly with long term care elderly can't say I wanted this but there are worse things I guess, I will live life to the fullest and love every minute.

12 Replies

  • Hi Boomer, I was dx Dec 2012. Tremors in right hand and left foot. Doing OK. Other health issues: epidural last Friday for referred pain (leg and hip), plus dx with paretic diaphragm (neurologist says not caused by PD) have to wear oxygen day and night. So for now, PD is the least of my worries (and least of my pain).

  • Hi Boomercd. None of us Pd patients are the same. So what I tell you here may not apply to you! But maybe it does and maybe you should be looking carefully into it. It does not cost anything, cut it is priceless.

    Are you aware that no Pd medication does anything to slow down or reverse your Pd? You may already be aware that exercise does have the ability to slow down or even reverse your Pd symptoms? If so, and you are not already doing fast walking, then why wait any longer and start doing it NOW?

    I was diagnosed with Pd in 1992 and took Pd medication for 10 years. I have been able to stay medication-free since 2002, when I stopped taking any Pd medication.

    In 1994, my neurologist changed my medication from Sinemet and Symmetrel to Eldepryl (Selegiline), which is an MAO-b inhibitor. Also in that year, I stopped going to the gym for 90 minutes a day and started doing ‘Fast Walking’ for one hour, three times a week. I had already given up my job, the day I was diagnosed. That got rid of a lot of harmful stress, which is not good for Pd, and I started doing brain exercises and developed a healthy positive attitude towards the management of my Pd.

    By 1998, nobody would have been able to see that I still had Pd.

    I have lived a 'normal' life, since 2002, even though I still have Pd. I am now 82 years old in 2016

    I wrote a book about my experience in 2003, which is available on my website

    It is also available in digital version on Amazon at $3.99. Don't be tempted to buy the so-called second hand books at a highly inflated price. My printed book will soon be available on Amazon as well.

  • John, You've posted tirelessly about the successes of your methodology--and I am one of your many believers--but disclosure of its limitations would also be a valuable service since it may save others from wasted efforts and disillusionment.

    Tremor-dominant PD applies to the majority of PwP, including me. I recall seeing a brief exchange you had with Hikoi maybe about 9 months - 1 year ago. (Sorry, I can't locate it.) You conceded that you "have not been able to help those with tremor" (quoted from memory). Could you elaborate on this? Did you mean that your fast-walking regimen, and other ideas, did not help just their tremors, or did you include their general well-being and symptoms as a whole?

  • Hi dumpelkin. This is very hard for me to nail down. I do not get a great deal of feed-back from people. Many expect to get better immediately, and when that does not happen they stop doing the walking. It took 4 months for me to realize that I had become a lot fitter and my times per kilometer had improved from over 10.5 minutes to less than 9 minutes. It took 4 years before someone stopped me in a shopping mall and said "You are looking good John". That was said in a rather accusatory way, because everybody knows that with Pd, you don't get better!

    The people who do come back to me are the ones who have stuck to the walking for several months and tell me they are feeling a lot better. Some tell me how much less medication they are taking.

    Exercise does EVERYBODY good. There is nobody who starts to walk regularly, as fast as they are able, who will not feel better! The question is, "Have their Pd symptoms got worse during the time they have been doing the walking?" If they have not, then at least, they have slowed down the progression of the Pd, and time will tell if they in fact will realize that they are getting better.

    Tremor dominant Pd patients appear to be so focused on the tremor that they don't notice the change in other symptoms and in their overall fitness.

    Some people don't understand that there are two different types of tremor. The most common one is the resting tremor and the other is what I am led to believe is essential tremor. Other people call it action tremor. I only shake when I am trying to perform fine motor functions. That tremor I am able to overcome but it is hopeless when I am under stress. That is what Hikoi and I do not agree upon.

    I still have most of my Pd symptoms, but they are all at a much lower level now. I am able to live a normal life, medication-free, but if I stop doing my walking, the symptoms start to return again, slowly!

    As there is no cure, and I don't think we will ever see a cure, I think that what I am doing is the best way to deal with Pd.

  • John, Many thanks for the lengthy, detailed reply. Your natural, cost-free approach should have great appeal for many of us, though, admittedly, some are so incapacitated, even with medication, that fast-walking is no longer an option for them.

  • Hi dumpelkin. What you say is not always the case. I have spoken to a large number of Pd patients, who have been either in wheelchairs or using walkers and unable to walk properly.

    It takes me less than 2 minutes to show them how to walk 'normally' and with me holding loosely onto their left arm they have all but 3 been able to walk properly. After a few minutes they can walk without me holding them at all. The difference is that before I show them they are controlling their walking the way they always have, which is using their subconscious brain. They have always walked without having to think about what their legs and arms are doing.

    I show them how to consciously control their leg and arm movements. It does not take long. If they continue to walk normally they can start my fast walking and they are A for away. If they choose to walk badly and are unable to do the fast walking that is their choice.

    My experience is that about 33 percent of them do the walking and the others opt for doing it the old way.

    So. If you walk badly and want to learn how to walk properly I can email you the instructions on the walking at no cost.

  • Johnpepper: Am working out on stairways, light sprints and fast walking on grass. Recently legs feel burning sensation in thighs during night and day. Did I do too much? Age 76. -Tom

  • Hi Tmarsella. On the face of it I would answer Yes to your question, but tell me more:

    1.Did you start the walking for maximum of 15 minutes?

  • Hi Tmarsella. I pressed the wrong button.

    2. Did you only increase the time by 5 minutes every second week?

    3. Did you take nearly 5 months to get up to one hour each walk?"

    4. Did you walk as fast as possible for all the walks?

    5. Did I not tell everybody that you must not do any leg exercises outside of the walking?

    6. I have said that if you do too much you will pick up injuries, which I think is what you have.

    7. If you want to exercise your upper body in between days you may do so!

    Come back to me with these answers please.

  • PD is a boutique disease it doesn't effect everyone the same. Before I was afflicted I watched my dad as hestruggled with it for 15 years. When diagnosed at the same age thought that I would be the same .Very depressing and upsetting. Once I accepted PD was living with me and I am in control of it and don't let it be in control of me , I live everyday as it's the last ,live life to the full ,live in the moment, not the past or the future ,THE MOMENT. Yes I get off days but doesn't everyone? They are not unique to PWP! Always focus on what you can do not what you can't and yes love every minute.

  • I agree, I have MS joined PD because of a friend of mine, his sister has PD and thinks it's the end of the world. Our Diseases are not death sentences and you are correct there are alot of worse things that could happen to us. I have has MS for 17 years had no idea what it was back then it didn't affect me until 2 years ago, I now use a walker 24/7 but I am mobile and alive. Good luck to you. I find with my MS that I learn more from these groups then from my Dr.

  • Yes it feels like you are going to die the next day, after your dx, when I was dx 12yrs ago, the "why me" was in my head day and night, I have PD but PD doesn't have mr.

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