I have a different sort of question due to the fact that I was just diagnosed two weeks ago with PD. I wonder if you could advise how you coped with the initial embarrassment/confusion/shame about the tremors one has when one is in public. My only symptom so far is a pronounced chin and lower jaw tremor. I'm noticing that I'm worrying if people - including my dear friends - would rather not have to look at me. Of course they will say that's silly and I know they will mean it, but that's my worry.
Thank you for any advice ~
Leilani
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Leilani23
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I think that over time you will adjust to your diagnosis, become less worried about this and in effect become yourself again rather than a PD person. At the moment your emotions could be heightened and you are stressed in public and this can often make the tremor worse. You have found a great site here with lots of information and support to help you - you are not alone! All the best
You are so right, Lesley ~ I have suddenly begun to think that others will see me more as a PD person than as me. I need to shift that perspective back to the way I was two weeks ago. I have a lot to learn, and I deeply appreciate the way all of you are helping me and each other. What a powerful network you have created. You are all living angels to each other. Thank you so much.
Newly diagnosed is a bad time emotionally. As you adjust to the knowledge yourself, you'll become less concerned about what other people think. Making jokes about yourself can help cover the embarrassment.
I can deal with most of the adults It's the children - answering their questions, the stares etc.. Just hang in there ' it does get better' and this a bunch of good people here who listen and help when you're confused, sad or happy
Please don't worry , you are not the only one , there are over 8 Million people suffering from this in the world !!. You should just ignore such people & forgive-them ; God knows what is in store for those ill -knowledgeable & illiterate people .
Now you should concentrate on how to improve your life style and fight & stay fit. There many help centers, web sites, etc which will give lot of information on how to manage the conditions, I am sure that you might have already registered and collecting information.
I don't know your whereabouts, but we can always be in touch, there are lot of people to help you ; please don't feel lonely .
I am from India ; land of Ayurveda and Yoga ; my wife happened to Advanced Instructor of Yoga and Teaches YOGA " FREE OF COST " . I have been greatly benefited from Yoga, Exercise & Pranayama ( Breathing Exercises ). If you need any help , please feel free to contact me. I also have Doctor in Marry Land USA Ex-US Army Colonel ; who is also fellow sufferer; If you need any help I will give you his ID ; so that you can feel free to contact him and take his advise " FREE OF COST ".
About my PD :
I was diagnosed having Parkinsons symptoms in July 2010. Allopathy Dr. told me to take mild medicine to start , as they felt , it could be even due to micro clots or micro paralysis. So Dr recommended me Selegiline & Evion ( vitamin E_ capsules), which would clear off micro clots .
In 2013 Jan; the symptoms became more pronounced , I was advised my Neurosurgeon to go for Ayurvedic treatment for better Management ; this is how I landed up at Vaidyaratnam in Kerala. My Neurosurgeon also told me not to go for L-Dopa / Sindopa for the time being.
By the grace of God ; I can still drive car , scooter , ride bicycle on public roads to nearby work ( Banks, post office, vegetable market, grocery shops etc ) / Gym-cycle with rowing cross bar for 15 Min in the after noon , 2 Kms walking in the morning & evening , regular 13 Surya Namaskara & stretching Yoga ( one Hr each ) during early morning and evening. But becomes stiff ; by evening 4.00 PM onward ; so I sleep - off , by 9.30 PM ; wake up 4.15 AM to free exercise & yoga ; then I will be more normal.
I just would like to share with you my routine food habits ; I am an vegetarian by birth , as such I don't follow any diet . In all festivals & functions , so far I eat all sweets , no-restrictions on any vegetable , ice cream , less fried items etc etc.
Daily :
Morning : 4.30 AM
1/2Ltr Water + 1/2 Lemon
Free Excercise
1/2 Ltr Water
Yoga
1/2 Ltr Water + 1/2 Lemon
Walking
1/2 Ltr Water + 1/2 Lemon
6.30 AM : Vaidhyaratnam Ayurvedic Kashayam ; followed dry fruits : 4 x Bdams + 1 x Black Date + 1 Walnut + 1 Goose Berry
0.30 Min Pranayam
8.00 AM One big glass :For Stamina & Strength : In warm water : Finger Millet x 2 TBS + Flax seed powder x 2 TBS + Jaggery to tase
09.30 AM Kappikachuu ( Indian Mucana Purirens) x 1 TBS in normal filtered water ( Should always been taken Empty Stomach & allow 15 to 30 min for action to start )
09.45 AM : 4 Big pcs of Water Melon ; ; this enhances action time !! this gives definitely quick action !!!
10.00AM Break fast ( All south Indian B/F ; no restriction ) + followed by 1 x TBS Ashwagandharista
1/2 Ltr Water
10.30 AM to 1.00 PM Busy with routine work outside & inside home ; after this slowly stiffens , pain here & there , uncomfortable walking
1.30 PM Kappikachuu (Indian Mucana Purirens )x 1 TBS in normal filtered water ( Should always been taken Empty Stomach & allow 15 to 30 min for action to start ) ( This I had discontinued for 4 weeks , but started since 2 weeks , feel better in the afternoon & evenings )
1.45 PM : 4 Big pcs of Water Melon ; this enhances action time !!
2.00 PM : Lunch ( All south Indian Lunch ; no restriction , some times wheat chapatis or pulkas )
1/2 Ltr Water
2 15 PM - 2.45 PM : Lite Nap !!
1/2 Ltr Water
3.00 PM : Green Tea / Indian Masala Tea with Cinnamon + Clove + Black Pepper + Turmeric + Ginger + Cardamom
3.30 PM : 15 Min Stationery cycling with cross bar + 20 Min Exercise & Yoga +
4.15 PM : One big glass :For Stamina & Strength : In warm water : Finger Millet x 2 TBS + Flax seed powder x 2 TBS + Jaggery to tase
+ 30 Min Meditation
1/2 Ltr Water
Routine work till 6.30 PM
1/2 Ltr Water
By 5.00 PM : after this slowly stiffens , pain here & there , uncomfortable walking
6.30 PM Kappikachuu x 1 TBS in normal filtered water , ( Should always been taken Empty Stomach & allow 15 to 30 min for action to start )
6.45 PM : 4 Big pcs of Water Melon ; ; this enhances action time !!
Go for 20 to 30 Mins Brisk walking
7.30 Dinner ( All south india , no restriction )
1/2 Ltr Water
Watch TV / Talk to Family members ; by 9.15 PM - 9.30 PM Max , go to bed , Take 1 x TBS Bhruth Tripala choornam in warm water ( Very effective for Constipation )
By 9.00 PM : after this slowly stiffens , pain here & there , uncomfortable walking .
Pl feel free to contact me , if you need any help.
Thank you for your detailed advice. I am definitely going to start yoga and will pay attention to your diet. I hope you are feeling really well. It looks like you take very good care of yourself.
Best wishes,
Leilani
Just be yourself. Your friends/family no doubt will still love you just as much.
Like us all, you will just learn to adapt and adjust to life and it's little problems. In the end you just realise that you need to get on with it, and ignore the PD as far as you can.
I always tell people I have Parkinson's and use every occasion to educate. When I explain the diversity of symptoms, I can see ignorance turn to enlightment and understanding ...and an appreciation of what it means to live with our quirky disease. By sharing and educating, public awareness increases. People then know we are intelligent beings not just a tremor or a scary non-human thing to be ridiculed or avoided. They support us. In fact, I have not only raised awareness of this degenerative disease, but personally have raised over $10,000 US for Parkinson research for a cure.
This is your new reality, but you are the same person as you were before dx. Seek medical help, join a support group, exercise, look into the Big and Loud therapies and don't give up on living, but be open to the new challenges and be creative in dealing with each as they come. You are not your disease.
I have just added two more intake from 08/9 ; yet to see the result , but you can safely add Pure Vergin Coconut Oil 2 TBS , before B/F , Lunch & Dinner ; pl see many sites on benefits of Coconut oil in PD ; no harm !!!. Other one is LDN 1.5 mg before going bed , u can also see benefits of LDN in many web sites, but pl consult your neurologist. Other details I have already posted below
This time is very challenging as you are having to face a multitude of emotions that are appearing as a result of your diagnosis. Embarrassment about your symptoms is normal until YOU embrace and accept them. Remember they are not you. They are just symptoms. You don't have to hide because of them. Sharing with others can normalise them. I was diagnosed 2 years ago and depending upon the situation I will mention that I have PD or I say I have a health issue or even not mention it.
Keep posting on the site and you will always get lots of support.
I know. It's such a confusing time in the beginning. I am not my Parkinson's. It's such a shock though. I know I have maybe 20 years of life left at the most. I just didn't expect to spend them in this manner. I have to change my expectations. But everyone has to do that in one way or another as life goes on. I've been lucky not to have had to do so earlier. I think about things like will I be able to hold my first grandchild if I should ever have one.
But in a way, it's good to be forced to re-evaluate where one is in life and appreciate what one has and where one is going.
Thank you so much for sharing your experiences with me. I hope you're doing well.
Make sure it is those around you who feel awkward instead. Like going into the pharmacy to buy condoms.
I f you go up to the counter and timidly ask for a packet of "XYZ" the result is you feel awkward but if you go into the pharmacy and in a very big very loud voice (if you still can with your PD) make the same request, the result is everyone else is awkward and you don't care. That's the idea anyway.
Kids are great. Just give them a big grin and explain. Then they will be your advocate too. At least they ask and not talk behind your back My first 2 weeks were great because everybody knew something was wrong with me--I was so vocal about my left leg dragging around like Igor. When I finally got a diagnosis, I was relieved it wasn't something worse.
We that have PD should not be ashamed or embarrassed . That will add stress which is the worst thing for PD. When I start a tremor or have trouble speaking, I just admit I have PD.
I play live poker. When I sit down I inform the players that I have PD. 2 years ago I could barely walk and had tremors all the time. Now I walk better and I am relaxed at the poker table. So there is hope we all can deal with PD. Good health to you.
Firstly you are very brave because I was in denial for 18 months although all my close friends knew something was up!
Secondly you have nothing to be embarrassed or ashamed about - if you had fallen and broken your leg, you would understand that your friends sympathies were genuine - so just be open with your friends and engage with them
I am an 11 year veteran of "The Beast" and I'm still pretty active and fit (fitness is key) and in control.
Stay positive, I believe strongly that there will be strategic developments in the next 3 to 5 years and by the time you reach my time there will be a cure
Good for you being active and fit with 11 years! That shows there's a lot we can do to keep control of our lives. What kind of activity do you find helpful? I appreciate the advice to keep positive. I'm absolutely going to work on keeping on being the same cheerful person I always was. Thanks for writing to me ~
Thanks Leilani and it is wonderful to hear such positive attitude - I will do everything I can to help you. Firstly you should read my free article on the Realistic Improvement in Parkinson's through Exercise (R.I.P.E.). It goes through a whole range of exercises that PwP can and should do. You can get in two ways. You can get it from me by sending your Email address to me at bob.raeburn@hotmail.co.uk or download t from the Edinburgh Branch of the Parkinson's UK URL edinburghparkinsons.org/ripe/
I have started Boxing Training as I may have said and Leilani23 - That is what I recommend for you (50% of my boxing training gym are women of all ages). Now I know this will come, perhaps, as a shock but the benefits of the intense training doing boxing (non contact version of course) and the associated strength training have had a huge beneficial impact on me and my daily life - and there is research to back this up. If you send me your Email address for the RIPE paper, I will include my boxing one or you can download it from edinburghparkinsons.org/box...
Once you have read these and decided what to participate in then, if you like I can give you my program and discuss one for you If you are in the US you can Google Rock Steady Boxing to get an idea of what is involved - and there might be one near you
I recommend you get The Peripatetic Pursuit of Parkinson's, a book written by patients for patients. Next, start the Pedaling for Parkinson's cycling protocol to slow the progression of the disease and help with your cognition as the years go by. My granddaughter refers to my "dancing hand", which makes it all okay. She's 3.
Nancyclist, I was wondering if brisk walking would accomplish the same. Do you think so? The big reason is that I live on Oahu (Hawaii) and to bike here is to risk your life. People bike here in the traffic. There's no place to bike where there isn't traffic.
Do you have access to a YMCA or a health club? I actually put my road bike on a trainer in the basement and ride inside at home. The important part is to lower the resistance enough to keep your cadence at 80-90 rpm for at least 40 minutes out of the hour you are cycling. I got both my bike and the trainer off of Craigslist and then had the bike shop fit the bike especially for me. I ride nearly 100 miles per week when I can ride outside and 5 hours on the trainer. The important part is the cadence and then try to keep your heart rate at 60-80% of your maximum heart rate. How old are you?
I'm 67. I am a member of the Y so I could ride a bike there. What is a trainer? I could try it. I really do love brisk walking and hiking, and the weather is great for it out here early in the a.m. But bike riding is probably great for the musculature too.
This reply is to all the wonderful, kind people who responded to my query about being newly diagnosed and embarrassed and confused about my symptoms. I feel overwhelmed and amazed by your compassion. It makes me cry! Now I know that I can make it in this journey with Parkinson's, with understanding and support from people like you. It helps so much to know that I'm not alone, which is how it feels over here in Hawaii. (I know I'm not really, but it's still new to me so far.) I'm very thankful for all your messages. I wish I could tell you each personally.
Immediately after being diagnosed, I started with a vengeance to find out about PD and its many symptoms. I could not find a single source of symptoms. I went to web sites for all the major PD Associations - nothing. I checked out hospitals all over the USA. Still less than happy. At this point I took it upon myself to create the most accurate and comprehensive list.
Send me an e-mail at: macbunch@Hotmail.com Subject area: PD Symptoms
I will send you a list of over 100 symptoms and more importantly, "How to use the List". There many features in the Excel spreadsheet that will: 1) Make your next meeting with your Neurologist more effective. 2) Give you a way to compare this visit and down the road, telling how you have progressed.
3) This is a tool for determining how your drugs are working. 4) There is a method of rating each of your symptoms used by the V/A. 5) This will help identify when you are getting better or a symptom has gone away.
This offer is open to anyone reading this reply. Note: My neurologist gives these to each of her patients.
It will bother you more than the people around you. When I was diagnosed (finally!) and medicated correctly you'd never know I have it. When it gets wore they may increase some meds or add a new one but My Dr., DR. Abidi, is great! The worse time for me is when I sit down to relax and then it starts up; only way I can relax is to stay active. I know that sounds nuts but when I'm working in the yard or working out at the gym - I don't feel as if I have it, really..... my PD primarily hits my left side but when I try to relax or read it stars shaking - I feel like I'm in fight with my head.....hard to explain. Good luck, a good Dr. can help stop it or a least help ease it I hope...
Hi Leilani. I hope you have told your friends that you have Pd? You must not feel that it is any fault of yours that you have Pd. It is NOT! Don't be ashamed of it. My first advice to you is not to start taking any medication until you have tried everything else. THERE IS NO MEDICATION THAT HAS BEEN PROVED TO SLOW DOWN THE PROGRESSION OF PD! So! Whether you take any medication or not, it will not have any affect on the progression of your Pd. Secondly, your tremor is not harmful or painful, it is merely unsightly. It is easy to hide most tremors, but not of the head. Your best bet is to tell your friends all you know about Pd, so that they will understand. If you want to learn all about Pd, from the patient's point of view then go to my website, reverseparkinsons.net and you can even tell them where to look for info on this difficult subject. What I have found is that fast walking has helped me to overcome most of my Pd symptoms. I have not needed to take any Pd medication since 2002. I did not have a resting tremor, which you appear to have. I did have an essential tremor, which clicks in when I try to do any fiddly tasks, like writing and bringing food to my mouth. That has not entirely left me, it depends how stressed I am at any time. I hope this helps you.
I realize I’m digging up a very old post but need to figure out what a jaw tremor is like. Does is occur when you’re jaw is at rest or does it occur when you clench your teeth together? I read that Parkinsons tremors usually occur at rest and wondering if that same logic applies to the jaw.
I have a pronounced tremor in my right hand. I used to feel embarrassed about it. Now when meet people I just tell straight out and early in the conversation: “if you notice my hand is shaking, it’s because I have PD.” I try to be as matter of fact as possible. I’m not looking for sympathy. Getting the facts out on the table as soon as possible alleviates anxiety. Many people know someone with PD. They understand.
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My first 2 weeks were great because everybody knew something was wrong with me--I was so vocal about my left leg dragging around like Igor. When I finally got a diagnosis, I was relieved it wasn't something worse.
Questions to ask when newly diagnosed
Just a little expression of gratitude...
Just discovered a medical clinic that uses PMB/ Vielight
Just did my FUS surgery at sonimodul in Switzerland and it's awesome.
