Shaky Sullivan's dilemma

On the first day of my diagnosis of Parkinson's I was given no information on steps to stop the progression of this disease. Through a local network I now have information on diet and exercise along with recommendations for additional supports

Has anyone else experienced this lack of referrals to other therapists, physical therapists, yoga or exercise programs??

I think I need to change my neurologist.

19 Replies

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  • Hi, I was dxd earlier this year and had a similar reaction. Michael J Fox (suggest a visit to the website) recommends getting 2nd and third opinions - or more - and I agree with that because I saw 3 movement disorder neurologists and each suggested a different course of treatment:

    Carbidopa/Levodopa (Sinemet®), or C/L, is the most potent medication for Parkinson's and considered "the gold standard". It was prescribed by the first MD, but the 2 subsequent doctors felt given my younger age for PD and that my symptoms are not severe (tremor mainly) that it was too soon to start with C/L. Understand also there are side effects to C/L.

    Azilect was prescribed by the 2nd MD and I found it to have a positive effect.

    Nothing was prescibed by the 3rd MD.

    Exercise was mentioned by one MD as I was walking out the door. I exercise at least 6 days a week now 1 - 2 hours, mainly brisk walk/ run and yoga. This makes me feel much better in general and research tells us it's one of the best things you can do, if not the best thing.

    This is what I've learned: PD is complex and different for each person so, if possible, take responsibility for your treatment in a very active way by doing research, seeking multiple opinions, and understanding the ramifications of whatever medication or path you choose. Also, I learned that a dog really is one of your best friends ;-)

    Here is a link you might enjoy:

    tons out there like this to explore. Good luck and keep us posted!

  • Thank you p-oui

    I'll definitely try other neuros. So far I am loaded with info I've acquired from PD books. Some have good stuff. Others way too technical.

  • Yes levodopa is the gold standard but there are a lot of alternatives out there to try first. I have been on Mirapexin and Azelect for 4 1/2 years and still doing ok on them with exercise +++

  • P-oui

    The video won't show can you give a link.?

  • So sorry about the link, there are many yoga tutorials posted on Youtube, how to find some: yogiapproved.com/yoga/10-gr...

  • Try this too: youtube.com/user/badyogitv

    Anyone can follow along via video from a laptop, etc. I find yoga is another great stress reliever as well as helping work on balance and countering rigidity.

  • The link did not work. Can you please try to send it again?

  • Yes just about everyone here has that experience.

  • My son, 2015 and 52 years old, received no guidance, immediately put on Sinemet. If I hadn't been so scared of the DX I would/should have given myself (caretaker and mom) time to research. It's been almost 2 years of a mess. It seems, based on what I read on this site, most Neuros have little time to give...especially at the initial consult.

  • I have had PD for 10 years and only one time was told to see a physical therapists to help keep my hands working and to practice moving small objects around to keep my hands from getting stiff.

    No information about exercise in any form. My son told me about the person who developed boxing for PD and ask me to try it but at that time about 5 years ago i believe i was doing very poorly and could not even do punches. I tried but had to give up. Then 2 years ago i was put on C/L and my life changed. I regain total use of my hands and my PD was almost completely controlled. Then i started Crossfit got stronger and faster and now enjoy a good almost "normal" life. The last 2 years have not been without problems and i have learned a hell of a lot.

    The most important thing i learned was the Doctors have as much knowledge as they can have about PD and most do their best. But PD and PWP are so varied and complicated there is no way they can do what is right for every PWP.

    So we must take charge of our PD and find what works for us.

  • paRecommend a video Discussion between Authors of “Goodbye Parkinson’s, Hello Life” (in Israel) and a Panel of Movement Disorder Neurologists (in Seattle). Goggle above underlined title to locate this video..

    Topic: TREATING PARKIN’ DISEASE, HOW TO MOVE FOREWARD.

    This video was brought to my attention by Google recommendation. It presents an serious discussion between Motion Disorder Specialists in Seattle and the authors of Goodbye Parkinson’s , Hello Life, which presents the Gyro Kinetic Method , which is practiced in Israel. All recognize that current treatment regimens (emphasizing Medication) are not meeting the needs of patients. And that although many medications are initially effective , their prolonged administration for continuing symptoms typically leads to addiction as well as other undesired consequences.

    Breaking down silos, with surprising frankness, they explore various factors that impact Patient treatment and how they could collaborate between themselves and others.to Move Treatment Forward, Finally a treatment recommend that makes sense.

    Issues Discussed

    Three Kinds of Patients (Alex Kerten, Physical Therapist)

    The First kind show little pain tolerance. “I have pain, take the pain away” . Can take away pain, but it will come back again and again. Can help them change bogy language and expressions – and pain changes along with it. But unwilling or unable to change their Parkinson’s scripts. So the pain and chronic habits will return.

    The Second type are those who are willing to work just hard enough to maintain their current state.. “Don’t have the energy or time to do on my own. But will come to you once or twice a week, do your brainwashing on me, and I’ll do the exercises”. Are resigned to Parkinson’s always having the upper hand.

    The Third kind are Parkinson Warriors. They are the ones who say, “I want to feel good.”

    They fight Parkinson’s, take responsibility by listening to and speaking with their body. Are ready to work on their PD everyday. Indeed they make war on PD.

    Which Patient Type describes you?

    Parkinson’s Disease or Parkinsonism, a Distinction

    The Five Stages of PD

    Stage 1 – (known as Parkinsonism) – person has some symptoms, but these doesn’t have to develop or get worst. .

    Stage 2 - symptoms much more noticeable – stiffness, freezing, tremors and trembling, Gait is stiff. The progress from Stage 1 to 2 can take months or even years – and if you’ve been able to change your script and communicate between mind and body, it never has to get there.

    Stages 3, 4, and 5. These stages of PD mark the major turning point in disease progression. Daily tasks become difficult and behavior unmistakably Parkinsonian.

    Because of the health challenges ,as well as personal and social impacts of diagnosis with Parkinson’s disease, being certain in the diagnosis is important. As a consequence response to medication (Levodopa) is often used, meanwhile at diagnosis the disease has often progressed to Stage 2.

    Using Medication (Levodopa), to Diagnosis Parkinson’s Disease. Problem, there is No Marker for Parkinsonism. By the time medication is useful for diagnosis., PD has already progressed beyond Stage1. Usually Levodopa is used for diagnosis. In turn, treatment becomes focused on Levodopa, Which initially, early in the disease course (Stage 2), is very effective.

    However, on going treatment, over time, with increasingly larger amounts, Levodopa tends to be less effective. Typically leads to addiction, and a resulting focus on side effects

    Besides Medication, Recommended two other area for focus of treatment.

    Wellness – exercise and physical therapy, group support. Recognized as be better place for initial focus and assessment. Would provide opportunity to delay the onset of disabling symptoms.

    Mindfulness – TaiChi, meditation, calibration, Gyro Kinetics. Each has a powerful connection to

    Neuroplasticity

    How to move Treatment Forward?

    The protocol for Diagnosis needs to be reconsidered. The current protocol’s establishment `of the distinction between Parkinsonism and Parkinson’s Disease, by empirically identifying PD is unnecessary (and even counter productive for many patients) . Rather the identification of symptoms, such as tremor, bradycardia, or gait issues, are sufficient diagnosis in themselves, to recommend the initiation of treatments.

    Notice the recommendation is to initiate Treatments (Not Treatment).

    All the panel recognized the current practice of limiting the initial stage of treatment to medicine alone, limited the opportunity to experience the benefits of both wellness (such as slowing down the onset of symptoms) and mindfulness (opportunities for adapted functions).

    Treatments……Think of as “Stool” with three legs

    Wellness Exercise, Physical Therapy, Movement. Provision of Group Support, which been recognized as Medicine. MJFFF Webinar

    LSVT BIG Physical Therapy. Focus on adapted movement, in particular speed and range of motion. In addition. Third focus on Calibration

    Gyro Kinetics, and others

    Medication including: Monoamine Oxidase Inhibiters, Agnosts, Levodopa. Deep Bain Stimulation (DBS) as well as others.

    Mindfulness: TaiChi, . Chi, experience, flow. Meditation , Calibration. Mindfulness and Parkinson’s, (article, LINK, StLouis APDA Magazine).

    Every day important for Patient to include all “legs of stool”. in their activity.

    Unfortunately, many focus only on “medication” leg. Doesn’t work well. Leave out much treatment opportunity. Healing is possible!!!

    Wellness is clearly the MOST BENEFICAL LEG

    ste

  • Yes! As I live overseas I no help at all.Can't wait to get back to the uk

  • Jannienannie

    When I read your post, I felt angry on your and so many of us behalf :(

    Why don't the neurologists keep us more informed!!??

    Mine did not.

    What I have learned I have learned from you all and other people with PD.

    I fired my neurologist, and will see my new one on the 18 of this month.

    We shall see if he is any better.

    I know one thing, I know what questions to ask!!

    Keep in touch!

    Blessings, Eva G :)

  • Good luck Eva! I hope the new one helps you. You're too kind to have to put up with having a bad doctor.

  • At this time all i need from my DR. is meds.

    I can do the rest on my own.

  • Bailey_Texas

    Well said!!

  • ATTAGIRL!

  • laglag

    Thanks my friend <3

  • I am in Stage One also and agree with others that once diagnosed we must immediately do research on our own on the internet. We are lucky to have that source of information right in our homes. I learned from that (not my neuro) that avoiding stress and exercise, exercise, exercise were the only things that could stop progression. My new Movement Disorder neuro agrees.

    I also think a daily probiotic is a very good thing for PwPs to start. I am not a doctor but luckily was a home economics major and enjoy thinking about nutrition. There is a very good article in the November issue of Cooking Light magazine called "What to Feed Your Brain" that is worth reading. Maybe I will post it sometime. It may be on the internet as well.

    I hope I will stay in Stage One for a long time. The one hour of daily exercise that is advised is so hard though. I really just get about 4-5 hours of good exercise a week since I have not gone back to Boxing since cataract surgery. I am finding it easier all the time to ride my bike at home (it is a Keiser MP3 and very inspiring) for an hour at 80-90 rpms. I still go to the YMCA for the Pedal4PD classes there too. The Yoga site someone mentioned above sounds good too. I do like my Tai Chi class with people who don't have PD very much and think it is a spiritual sort of exercise too as well as good for balance.

    I'm sorry this post has turned into more of a chat :).

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