Newbie here...

Hello everyone, I am newly diagnosed (3/22/17) and after a year of going to different doctors I finally received an answer (though not one I wanted). I haven't been put on any meds yet although I meet with my mds in a few weeks and we will discuss it then. I am 39yo and when I was told I was devastated and developed very bad anxiety (my gp gave me xanax for at night so that does take the edge off).

My left side has been affected and is very stiff and painful, no constant tremors, just occasionally in my left hand although it is starting on my right thumb which is making me nervous.

Well I hope in joining this online forum I can get some support and get to know others who are going through this as well.

Thanks,

TheCount

35 Replies

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  • It's a journey, TheCount. Maybe you can have a look here :

    fredphillips.wordpress.com/

    and share your sentiment about it.

  • I just read this briefly & it is very good. I will read it in detail soon. A lot of good information. Thanks for posting!

  • Fred, you are a talented writer capable of deep introspection. Thanks for sharing.Tribselyov

  • I'm not Fred, Tribselyov, but only one of his eFolowers. :-(

  • I think you are close to the money there Mr Phillips. My only experience is we can try but never get back to normality. The brain is amazing in that it can become damaged but rewire itself to continue that activity. The problem is the years of learning that task, decades, are no longer contributing to that action.

    Lets say you love the activity of Basketball. You started dribbling and practicing when you were 7. Your body picks up nuances, over decades, that get honed. When your body starts to fatigue your mind will kick in and figure the smart way of doing something to conserve the most energy. In sports there is a tipping point when your body can no longer cheat age and you really have to be in tune to know when to go out on top.

    If the task of an action is represented by ( lets say a river ) If that river gets blocked it naturally wants to divert and try another path. The problem that I see, the tributaries to that river can be severed and never become part of the river again.

    Then Again, I ramble on, there for I am, HAL.

  • Hal,

    Great insight. I really appreciate your perspective.

    --John

  • Xenos,

    Thanks. That's a great link. I've never seen that before.

    --John

  • Welcome! Stress is bad for PD so calm down. I know your young but you've come to the right place. PwP's (person with Parkinson's) are very helpful on this site. FYI: I was diagnosed at 46, over 13 years ago & I'm still doing fairly well so don't give up! A few things to remember:

    o Accept your diagnosis & take action

    o Exercise is important

    o Stay positive-right now there's no cure but there could be one right around the corner. You were dealt this hand for a reason so staying positive can only help you.

    o Ask your doctor their opinion before you try certain things (some like their Neuro to be a Movement Disorder Specialist-they are usually more versed in PD.

    o Sometimes your doctor may not agree with you on some things so weigh your opinion with theirs. Sometimes PwP's are better because they have lived it but just be cautious, sometimes the doctor knows best.

    o Research, research & research

    o Ask questions- believe me, there's no silly or embarrassing question around here.

  • Great comment and advice, Deb. Your insight has always been so helpful to me.

    Thanks.

    --John

  • Morning

    This site will give you lots of inspiration and courage

    Your not alone

    Make sure your surrounded by positive people and that you have enough kindness and support

    Join a gym walk jog run

    Eat heathy ,meditate do yoga

    Take coconut oil

    Drink fresh smoothies

    My husband was diagnosed last year at 46

    These are all the things I encourage him and help him to do

    For stiffness and pain he sees a osteopath also has a massage once a week ,Iv given him a tens gadget for he's back

    We also swim he does boxing training

    A heathy mind and lots of activity

    As much as you can do

    Really helps

    Good luck

    Don't let this beat you

    Candy x

  • Hi my case is almost the same as yours.After numerous tests,scans etc I was diagnosed last year (I'm 55).I also have stiffness and pain In upper back and left ribs.Although I do have a right handed tremor, which is controlled with senimet.This group has really helped me come to terms with the disease. Stay positive! I've recently joined a gym and it has helped me so much especially with the pain and stiffness.

  • Welcome to the club! I am 42 and was diagnosed 3/16/2016, about a year ago. This site is great to keep up on news related to parkinson's disease (pd). I have similar symptoms to you but on my right side. The azilect made a big difference for me. I ended up taking a 1mg tablet after dinner. Also, take a look at the Michael J. Fox Trial Finder: foxtrialfinder.michaeljfox.... I enrolled in the inosine trial at Mass General Hospital, and it has been a good experience.

  • Great attitude, good for you! I'm curious to learn more about inosine at Mass General Hospital. Is it a replacement for Sinemet? I've been reading that carbidopa/levodopa increase the risk of developing dyskinesia over the long term. I'm looking for a safe but effective alternative to that particular drug, even though it does a good job currently of controlling my symptoms.

  • I don't think it is a replacement for sinemet, but the hope is that it slows the progression by raising uric acid levels in the blood which has a neuroprotective effect. I take 4 500mg pills a day of either inosine or placebo (sugar). This dosage was determined after blood tests to make sure my uric acid levels weren't high enough to cause gout. I started the trial last August and it goes for two years. I figure if I am getting the placebo I wouldn't be taking inosine anyways so no loss there. The details and locations are here: clinicaltrials.gov/ct2/show...

    It looks like most places are still recruiting.

  • Good information jrg54321,

    I have now become a member of the Michael J. Fox Finder trial set. Good info.

    --John

  • First and foremost you have to accept that you have been diagnoised for PD. Also download Exercise booklet from American PD Association and do these exercises regularly Try and find a local support group and be an active member.

    apdaparkinson.org/resources...

    Where are you located?

  • I am 57 years old and wasvdisgnosedv3 years ago. My left ride is also affected. Slowing and only have slight trmorsbin left leg when I get tired. I am on lowest dose of meds and also do some alternative . I still ride my horses at least 5 days per week and tryvtovdtayvsscaxtivevas I can while making sure I get my rest.

  • Hello TheCount,

    You are right! The 1st hurdle to clear is psychosocial. This site helps. As a retired surgeon due to Parkinson’s, I know all about the “grieving stage.” Fortunately, we have the capability of learning from others. Putting your thoughts to paper helps clarify thinking and allows you to explore new avenues.

    In the journey, I made a chance observation that the world’s 1st person with Parkinson’s disease unknowingly described what we now call Kubler Ross advancement to acceptance, which is essential as you deal with this disease. That individual was King David of Goliath fame. My observation and story are told in “Parkinson’s First Hero: King David.” Do not despair or be put off by biblical references; this is a story to be read as ancient Hebrew history... even with a cynical forensic approach.

    THE eBOOK IS FREE today through Friday on Amazon. Look up the above title on Amazon or Google. (You can download the Amazon Kindle reader app for free to any computer.) You may also check out my website at WWW.CRVOYLES.COM

    All the best!

  • Thank you for access to your ebook: Parkinson's First Hero: King David, doctor.

    Just a note - Amazon told me the ebook was not available for download to my devices (both my iPad and iPhone with a Prime account received the same message

    However, it did say I could Read for free with my Kindle Unlimited Subscription. The ebook download from Amazon and your site were free with the same subscription. No problem. I joined the 30 day trial and can easily read your book now.

    Thanks. Can't wait to dig in, but I give others this "subscription" information in case you are using an IPad or iPhone.

    --John

  • Cyberspace strikes again.... However, I just downloaded via Amazon and asked for "King David Parkinson's"... No problem

  • Hi welcome

    I was diagnosed 8 yrs ago after about 5 yrs of symptoms

    Some things that have helped ME

    I changed to totally Gluten Free diet after reading Grain Brain & my tremors ceased

    I enjoy parkie boxing

    EXERCISE is extremely important (I wish that had been pointed out to me yrs ago)

    I take MCT coconut oil every day

    I recently read Brain Storm which gave me heaps of positive hints on tackling PD symptoms

    & the following quote

    PD is not a death sentence

    But it is a life sentence

    It's your life so research research don't get bullied into anything you r not comfortable with

    & finally Keep in positive company

    Good luck

    Kas

  • Welcome to the Darkside! I am very sorry to hear your diagnosis so young. I can relate to your story mine is almost identical. I started signs at 40... Diagnosed 45. One year ago next month. Left side. I felt immediately better with sinemet. Anxiety... Yes ridiculous amounts but completely expected. It sucks! The whole damn thing does. You will greive (you need to it's a bloody shock) but it does dissipate over time. Trust me. The great news is I live almost as though I don't have the disease since meds. A huge weight was lifted once they started working. You realize you can and will feel better. Reach out on here there are great, informative people who span the years and levels. Your life will regain normalcy and it might be a new normal but with meds, time, adequate sleep, exercise and acceptance life goes on quite nicely. Ask me anything big or small as I would be happy to share.

  • Welcome to you and to the many others that recently joined our interesting group that I did not acknowledge. I would just like to add that you might want to try adding a daily probiotic to your meds if you don't already take one. Probiotics are supposed to help keep the gut healthy and there seems to be a connection between the gut and PD. Yogurt has probiotics and there are many supplement brands in the drugstores.

  • TheCount, you've come to the right place. There are a lot of knowledgeable people here and even though we all have PD we're all different. The best to you.

  • Support is what you will get, in spades! You couldn't meet more supportive people anywhere. A great place to ask questions, share solutions or ideas, talk about research, and rake in the encouragement. I understand that feeling of shock when you get that (completely unwanted) diagnosis, and it must be especially stressful at your young age. I have one word of advice: exercise!

  • I am so sorry as you are so young

    My husband is 74 and was diagnosed 18 months ago and I suppose we accept as he is older

    I hope can accept and you get a good doctor and specialist like my husband has

  • Are you aware that no Pd medication does anything to SLOW down the progression of Pd?

    Are you aware that fast walking CAN reverse some Pd symptoms?

    If you are rigid, some medications CAN temporarily give you relief from this.

    Some Pd medication CAN temporarily make the tremors disappear.

    But while these medications are temporarily making those symptoms disappear, your Pd is continuing to GET WORSE and you invariably have to take MORE of those medications to maintain the same benefits until you get to the point where you CANNOT get any benefit at all.

    Where do you go from there?

    The answer to this question is that MOST patients are still capable of walking properly and should immediately embark upon a walking program, which is to start walking for 10 minutes every SECOND DAY, AS FAST AS YOU CAN. After every SECOND week you add on another 5 minutes until you eventually get to 1 hour. Then you walk every SECOND DAY for 1 hour and watch your health improve and your need for medication to slowly reduce.

    If you already shuffle at the time of diagnosis then you CAN learn how to walk properly by using your conscious brain to control that walking. By this I mean you have to concentrate on each movement and do it purposefully. Slowly you will find that this becomes easier and easier.

    It took me 8 years before I was able to come off my Pd medication and have continued to live, MEDICATION-FREE ever since 2002. I have continued conscious fast walking since 1994 and will do so until I am too old to do so. I am now 82 years old and in good shape.

    If you want to learn more about what I have done, at NO CHARGE to you, then go to: reverseparkinsons.net and read over 400 articles all about how to overcome many Pd symptoms. I have had Pd symptoms since 1963!

    Some patients appear to be unable to move, at the time of diagnosis, but that is rare. It takes COMMITMENT on your part to start doing the walking, but if you don't then you will continue to go downhill until you get to the point where you are unable to do anything. I found that I had to WALK FIRST, every second morning, before I did anything else. In that way the walking became part of my life.

    If you live in a country where you are unable to walk outside because of the weather, then you can find a shopping mall and walk there, or on an indoor track.

    THE DECISION IS IN YOUR HANDS!

  • JohnPepper,

    Thank for making such extensive, wonderful, helpful, researched articles available to us.

    They are all beautifully arranged into categorizes according to meet the needs of any individual; either pWp or Caregivers

    I look forward to reading each and every one of them.

    --John

  • You're welcome!

  • Welcome TheCount,

    Although I've not been here very long myself, I have found compassion, wisdom, knowledge, and so much help in understanding my PD. I hope you will write often, feel free to ask questions, let your anger out, understand that it's ok even to cry.

    People understand!

    I am 68 years old and was recently diagnosed with PD about 1 1/2 years ago.

    It's good to meet you.

    --John

  • Welcome, TheCount! We are a very supportive group here!

  • Thank you everyone, I appreciate the feedback and supportive words.

  • Hi Fred! I can see you with out meds for the attitude that you have i did Silva mind Control many years ago that you need to go to different s stages of Alfa , Beta, Gama which you control your body thru your brain also your inspiration it motivates me to just think about your going to be heel.

  • What a coincidence... I was also diagnosed with PD on 3/22/17 after having left hand tremors for about a year which I tried to ignore being busy taking care of a family member with developmental disabilities who also developed serious health issues related to Lyme disease. I was prescribed 1 mg of Rasagiline (MAO inhibitior) which have been taking only for 1 week and in the meantime trying to learn about alternative treatments. I know that the stress of being a 24/7 caregiver and also being diagnosed with Lyme myself contributed to PD development. However, feeling so fortunate to find this group and get opinions of experienced PD veterans, including John Pepper.

  • Welcome newbie. You will find very knowledgeable, kind people here. You are not alone.

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