pinkdaisy 17 Report post Posted April 16, 2016 Thank you Brian for sharing your story, which is truly an encouragement for me and any coming newbies Thank Christie for your advice. Yes I do have moment of " poor-me" . I totally agreed with you on " dark thoughts and stress which both fuel our symptoms and progression". I remember when I found out my diagnosis, I was so sick during that week with so many symptoms of PD that I never had. PinkDaisy Share this post Link to post Share on other sites
RichB 2 Report post Posted April 16, 2016 pinkdaisy, In answer to your question, I think I went a year of two before starting meds. It's really a call that you and your MD make together. I was not crazy about taking a lot of drugs, but my current neurologist suggested that living comfortably should be a strong consideration. One thing to do is learn about the disease, and how it works. And, learn about dopamine. That helps to understand how the different classes of drugs work, and why they are used together. Understanding why things happen allows you to look at your situation more clinically, and reduces the helpless feeling. At least, it does for me. As far as exercise, I participate in a Parkinson's group, run by the local park district ,that meets 3 days a week. Things range from stretching to some strength work, repetitive movements such as boxing, There is also a large focus of balance and gait exercises. If that isn't available or you don't have the time, you can do a lot of things at home, such as seeing how long you can stand on one leg (make sure you have something to grab on to). Google "PWR moves", and it will take you to a site and an exercise book you may find useful. Rich 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted April 16, 2016 Thank you so much RichB for your quick response. I have not yet formally diagnosed. Once I receive my PD stamp , will look into /organize more exercise regime. Take care, PinkDaisy Share this post Link to post Share on other sites
kai 5 Report post Posted April 20, 2016 pinkdaisy, I too was 45 which was 5 years ago when I was diagnosed and remember feeling the same scared thoughts as you are feeling and to be honest still feel from time to time. It does take time to process your thoughts and feelings and that's ok. The best advice I can share is to be open about all of your feelings to someone. Whether its a family member, friend, therapist, or even as you are doing so wonderfully here on this forum, being able to talk about them really helps me keep in a positive place. We are all in this together! 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted April 20, 2016 Thank you KMRfor sharing your advice. I am sure I will find the right moment to be open/share with someone. At the present time I feel more comfortable sharing in this forum. As you said " we are all in this together". However I emotionally collapsed with my manager. PinkDaisy Share this post Link to post Share on other sites
MurrayPD2 228 Report post Posted April 20, 2016 Interesting to hear similar stories. I agree it does take determination. I fought as hard as I could until I finally had to seek help or no longer work or sleep in a regular bed, or many things.... I discovered at 44 that I was battling PD for about 7 years. I started taking medical treatments right away because there was nothing to get me moving otherwise. I am now feeling good and staying pretty active. The only time I had a bad cramp was when my stress got really high. I have a positive outlook, even though I did take a while to finally accept it and work with it instead of trying to ignore it or bury it with medicine. So far, this last year has been the best I have had in a long time. 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted April 21, 2016 (edited) Hi all friends with caring soul, Nice meeting you Murray PD2 Just quick update on my second follow up with my neurologist #1. After 8 months waiting to see him; he said he is done with me. Just continue to wait to see movement disorder specialist. He concluded that I have presented some characteristics of Parkinsonism. I was hoping at least he would prescribed something for my hand pain/cramp which is there all the time once I wake up. He declined , not pain specialist and suggested to speak to my GP. Lyrica is not helping My neurologist #2 whom I saw a month ago said I have early stage PD. Will see him after my head MRI on May. Now I m in a stage of waiting game with unbearable hand cramp at times. My family doctor , I hate to admit she is nice but lacking so much clinical skills. She admitted she does not have any early onset PD patient even with her 10 yrs of her GP experience. PinkDaisy Edited April 21, 2016 by pinkdaisy Share this post Link to post Share on other sites
TexasTom 744 Report post Posted April 21, 2016 One of my Rock Steady Boxing classmates was out visiting family in California, and commented it was great to see some YOPD in the classes working out and kicking butt! http://blog.fabletics.com/2016/04/blog-passion-project-jennifer-parkinson/ No idea if Jennifer is on the forums, but great posting. 1 Share this post Link to post Share on other sites
WindsongMoonChild 487 Report post Posted April 21, 2016 PinkDaisy Dear, I, too, was diagnosed at age 45. I cannot say what it will take for you to come to terms with this disease, but I can tell you that most of us do come to a place of détente with it... and, often, time is the peacemaker. With time, we see the pace at which our symptoms are progressing and, then, we often find it easier to come to terms with. Whether you choose to fight, or deflate for a while, grieve or rail for a while--all is acceptable. The one thing Parkinson's comes without is a rule book on how to handle it, so if it's working for you, then, it's the right way at that moment. Even tears have their place. Peace, Kim 4 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted April 21, 2016 (edited) Thank you Texas Tom for sharing Jennifer's post Kim, Thank so much for replying my post. I have no doubt that you are one of the caring souls in this PD community i.e. sharing your email/phone # At present time, I have decided to grieve and fight spontaneously. PinkDaiy Edited April 21, 2016 by pinkdaisy Share this post Link to post Share on other sites
MurrayPD2 228 Report post Posted April 24, 2016 Hi all friends with caring soul, Nice meeting you Murray PD2 Just quick update on my second follow up with my neurologist #1. After 8 months waiting to see him; he said he is done with me. Just continue to wait to see movement disorder specialist. He concluded that I have presented some characteristics of Parkinsonism. I was hoping at least he would prescribed something for my hand pain/cramp which is there all the time once I wake up. He declined , not pain specialist and suggested to speak to my GP. Lyrica is not helping My neurologist #2 whom I saw a month ago said I have early stage PD. Will see him after my head MRI on May. Now I m in a stage of waiting game with unbearable hand cramp at times. My family doctor , I hate to admit she is nice but lacking so much clinical skills. She admitted she does not have any early onset PD patient even with her 10 yrs of her GP experience. PinkDaisy you a good doctor who knows PD. Usually an MRI will not show evidence for PD. I had to do a DaTScan; which is easier to catch PD, but even then it is not a 100% accurate for catching everything (nothing really is). So, it is hard to catch, but it sounds like you are not getting the support you need. Once I was affected more and the PD posture was obvious, I had the DaTScan and it was the "classic" example of PD; so that left no doubt. I pretty much did everything else anyway. What I really want to point out, is you are driving the boat. They don't know you as well as you do. You have to be persistent with doctors. I let them tell me what is best, but I think i also steered them wrong by pointing them to my back problems. Once I realized this approach wasn't working, I had to push for attention to help. They did not know how much I degraded or that I was not myself. It took a lot looking and finding someone who was confident enough to walk in the door and say "you clearly have parkinsonion symptoms" (word for word what the said), Then I was on the right path.. finally! 3 Share this post Link to post Share on other sites
TexasTom 744 Report post Posted April 25, 2016 Often a MRI is done with "suspect PD" to rule out any other issue. Hence very common to have an MRI, blood work, and possibly the "heavy metal test" (pee in a bottle for 24 hours, if you have done metal work such as welding/grinding). 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted April 25, 2016 Thank Texas Tom and Murray-- My neuro #1 did send me for head MRI and all the blood work i.e. for heavy metal---all are normal results) The bottom line I have to see this MDS . PinkDaisy 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted May 12, 2016 (edited) Hi all, just quick update I finally saw MDS and has diagnosed me with early stage of PD. She seems very nice and I do get the feeling that she is someone I will trust and guide me through this journey. She has decided it's not time to put me on any medication. EXCERCISE is the only thing she has prescribed for me and continue to carry on with my daily activities. Will see her in 3 months. Here is my daily regime , please feel free to share any advice. Am I doing the right thing? Taking supplement : Q10, fish oil, Vit D, Calcium, Turmeric, drinking green tea, fruits and almond, green vet. Exercise Regime: have small black coffee before power jogging 1hr almost daily, playing ping pong with the robot mainly on left arm for about 30-45 min daily, just attending local Tai Chi 1W, stretching hand exercise while working at my desk. Force use/exercise left hand if remember. Try to aim at least 12000 steps daily. PinkDaisy Edited May 12, 2016 by pinkdaisy 4 Share this post Link to post Share on other sites
adams234 268 Report post Posted May 13, 2016 You regime in very ambitious and keep it up as long as you can. Good luck. Glad you found a good MDS. Blessings Adam 1 Share this post Link to post Share on other sites
FightIt 5 Report post Posted June 7, 2016 Keep fighting PinkDaisy. I was diagnosed similarly about three years ago. Exercise and experimenting with the medication schedule (with my doctor's consent) as well as keeping tabs on my protein intake have made a huge difference. I can usually minimize the down times if I am very careful and my typing is back very close to what it was before the disease during up times. It helped me a lot to keep a log of when I take the meds, when I eat, how much protein and how I feel. I started electronically on my phone but have lately enjoyed doing it in a bullet journal. Writing with a good pen is fun for some reason now. Good luck and God Bless you. 1 Share this post Link to post Share on other sites
Elizabeth Manley-Calavano 1 Report post Posted June 14, 2016 Hi Pink Daisy,we all know what you are going through.I am 47y/o-my symptoms began to worsen after the death of my 21y/o daughter(in picture with me from Brugada disease-rare heart disease that can cause sudden death).I kept trying to convince myself my symptoms(slowed movements left sided,sleep disturbances,etc) were due to the depression.Than began to have balance issues and left thumb tremors before finally going to doctor.I am still working full-time-youngest child is now 18-best advice is to exercise,keep moving whether waking,riding,swiming,gardening,etc-helps alot.I do take selgeline and vitamins/herbals-green tea also.Some days I wake up and all I can think is"I have Parkinson's".But have to remind myself not to let my thoughts control me.My 18y/o son has had difficulties with all of this.With death of his sister we were genetically tested for brugada and he and myself also carry the gene and at the same time as my PD diagnosis my husband was disabled at work due to a spinal injury.Life throws us speed bumps-you just have drive around them and find a new normal.For me the worst are the non motor symptoms of extreme fatigue,constipation and sleep disorder.Exercise does help with the fatigue when i'm not to tired to exercise lol!.We have no known family history of PD-also had no known family history of Brugada-lots of wonderful sites for information about the motor and non motor symptoms of PD. Knowledge has helped me cope.It is difficult not knowing what to expect progression wise as we all experience PD differently but knowing the motor and non motor symptoms has helped me understand the disease better not only for myself but for the patients I work with(home care nurse).Explaining to kids that mommy is sick and may not always be able to do everything you used to do helps also.My son was 13 when he and I noticed symptoms-also 13 when his sister passed and he has been very supportive most of the time and understanding when I am to tired or muscle/joint pain or stiffness keeps me from doing the same things with him I used to do.My job is aware because I chose to disclose but they don't seem to care and at present it doesn't interfere to much with my ability to work-other than the exhaustion.Support groups help for some people but difficult to schedule going to around work,kids,life in general! Thoughts and prayers for you and your family 1 Share this post Link to post Share on other sites
Peace 187 Report post Posted June 15, 2016 (edited) Hi rugratmom-I'm sorry about your daughter and all you have going on in your life. I don't know how long its been since your diagnosis but I remember those times of waking up and the first thought was "I have Parkinson's Disease". Due to stress, my symptoms were much worse shortly after my diagnosis including dream/sleep issues. It does get better! It is a tremendous help to practice mindfulness and live in the present without going down the dark road of worrying about the future. When Mindfulness was first mentioned to me my diagnosis was still new and I thought "ok, so you want me to pretend nothing is wrong and ignore the fact of my situation" but since then I have found it to be extremely beneficial. Take care and welcome to the forum. Edited June 15, 2016 by Peace 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted August 19, 2016 (edited) Hi all, Just wanted to update my second visit with my MDS. All goes well, no need medication. Continue with EXCERCISE i.e. cardio exercise is recommended, the more sweat+++ the better. I parked my car and walked an hr to and 1 hr back from MDS . I will see her in 6 months. When I asked her about Azilect, her response was she has that back in her head but she would not prescribe it today. She mentioned there has been a 5 yr study on Azliect x since 2011. Hopefully will get more confirmed information on slowing the disease. Have a wonderful week-end. PinkDaisy Edited August 19, 2016 by pinkdaisy Share this post Link to post Share on other sites
stump 532 Report post Posted August 20, 2016 FWIW, a fellow I know from kayak fishing was telling me he spoke directly with the lead scientist that had discovered the compound we now know as Azilect. That scientist apparently thinks the whole idea that it can slow progression of PD to be complete hogwash. I know a few people on here have been doing well for some time with Azilect, but so far there is no evidence that it does anything to slow progression. That said, it's impossible to say for sure if those that believe it's helped them would be the same or worse off without Azilect. 1 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted February 25, 2017 (edited) Hi all, I had 6 months follow up with my MDS today. All went well and will see her in another 6 months. My symptoms are still mild, no need for medication except my exercise. My hand cramp has been improved or I just get used to it; I have stopped taking Lyrica. I hope my progression will be slow..slower..slowest., a positive case in this forum to lift up the spirit of any young new members.. Warm wishes to all my dear friends and keep fighting. PinkDaisy Edited February 25, 2017 by pinkdaisy 2 Share this post Link to post Share on other sites
Minna76 8 Report post Posted March 2, 2017 (edited) Hi there, I am 40 & was diagnosed right before my 40th last May. We have similar symptoms. Keep exercising!! Even though it might not make your symptoms better on a daily basis the research supports it for helping slow progression. I would recommend using a dictating system instead of typing if you can, it helps me tons!!! I also use Theraputty and a stress ball before bed for my left hand, helps with the rigidity. Once day at a time.....Nobody can tell you what your future will be like so live for today when symptoms appear manageable & stay positive as much as possible... Melissa Ps... just seeing your post above! Great news Edited March 2, 2017 by Minna76 1 Share this post Link to post Share on other sites
LAD 370 Report post Posted March 3, 2017 I was diagnosed at 46 two and a half years ago. I have been exercising and doIng a program called Parkinson's wellness recovery www.pwr4life.org. They have lots of videos on YouTube as well. It stresses mind exercises as well as physical exercises. My doctor also recommended dancing-my husband and I have been taking ballroom dance classes for two years. It's one good thing that has come out of this PD. We never danced before except at weddings and never knew how to dance. Now we go to wineries and places to dance and we look pretty good. I honestly forget I have PD when we are dancing. Yes it's hard. Just remember that life will be different but it can still be great! Plus like me...you have kids so giving up is not an option. Don't go down the internet rabbit hole either. Find positive forums. I love the Bryan Grant Foundation site as well...all positive! Keep going! 2 Share this post Link to post Share on other sites
pinkdaisy 17 Report post Posted March 3, 2017 Thank you Melissa and LAD for your support and tips. I have to check out Bryan Grant Foundation. POSITIVITY is all we need. PinkDaisy 1 Share this post Link to post Share on other sites
LAD 370 Report post Posted March 20, 2017 Hope things are going well!!! 1 Share this post Link to post Share on other sites
