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Parkinson's Movement
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How do you handle being newly diagnosed with PD?

I'm a 66 year old female just diagnosed with PD a month ago. Since that day all the sweet things in my life faded and anxiety and depression have taken over. I've researched and read tons of info, but not really helping.

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I was happy actually because it meant there were treatments to relieve all the symptoms I was experiencing. Last year was one the best years of my life, hoping to continue. My story here: healthunlocked.com/parkinso...

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Love! Your positive attitude. Thank you

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Actually I had mixed emotions but had a huge sense of relief too! Had so many tests and saw so many different doctors.People were thinking I was a hypochondriac. I knew all along there was something wrong and at least I can treat the symptoms

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Hi Lynne, I can so relate as I was exactly your age when diagnosed but with symptoms showing up several years prior. It was tough hearing the neurologist say I’m sorry, and I was bummed out for awhile, but thanks to support from this group, supportive friends and family, and online research, I learned that PD is not a terminal illness, everyone is different, and my health is absolutely affected by my physical, emotional and spiritual work on a daily basis. That means daily exercise, as much as possible, and plenty of rest during the day, eating very well, no processed food, connect spiritually in whatever way is meaningful to you, try to be social as much as your energy allows, work on gratitude. After all our bodies are all going to fail us eventually, Pd or no Pd. Your neurologist should be a movement disorder specialist but you are in charge; don’t be afraid to speak up if you aren’t comfortable with any medication suggested. Try to find joy in everyday miracles.

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Hi Lionore! Thank you for that beautiful response. It really clicked in my head. After my diagnosis I just gave up. But reading what you wrote to me just changed me. Not just my mind but way down deep inside. I take my grandkids to school and pick them up. When I went this afternoon I felt connected again. I've read and investigated almost everything on the internet and just like you I've learned that exercise and diet are key to living with PD. And meds are also critical to stay informed about. Thank you so much for taking the time to answer me. It truly made my isolation disappear.

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It is truely a shock to get the PD diagnosis. There is little in life that prepares you. PD has such a dreary reputation that it is easy to uderstand just wanting to crawl under a rock. Recent TV ads don't help. Fortunaely they are mostly exagerated. Care by a good Movement Disorder specialist is essential. Sites like this one can be informative and boost your spirits. I get some help from books. I'm a Lucky Man by Michael J Fox meant a lot to me. I wrote a poem The Message to share my diagnosis with my friends. It is published here. Unfortunately the format suffered in the download. The verses each are four lines long:

healthunlocked.com/parkinso...

You've come to the right spot. People here care. Stiff Upper Lip!

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Such a genuine,honest and caring answer. Thank you so much!

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I was diagnosed in November 2014 - I’m 59 now-and ny neuro reckons I’ve had this at least five years. I was quite relieved; I thought I had something worse! Not much in my life has changed, and yet everything has changed. I look after myself ferociously, I exercise, I eat properly and because my sleeping pattern is knackered, I rest when I can. I’m still working, still very active. We’re all different but what has worked for me is doing the research, making the choices that suit me, and trying not to obsess. I try not to make this the central thing in my life, a little denial is helpful sometimes. Someone said PD gets a bad press and it does, which is why i am careful who I tell that I’ve got this. No one wants a diagnosis of PD, but there’s life afterwards.

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Very wise words thank you.

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The replies here are excellent. I would only emphasize that exercise is critical. There is much written about various types of exercise. Fast paced cycling can reduce your symptoms an average of 35%. I wrote a book on the effects of cycling on my PD that you. may find helpful: "If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth: Courage, Tenacity and Love Meet Parkinson's Disease". Take care.

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Can you please tell me what. Stationary bike to use for fast cycling

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I got the Kaiser MP3i cycle about 5-6 months after diagnosis almost 3 years ago and it has paid for itself now. I really like it and now cycle every Tuesday, Thursday, Saturday and Sunday for 46 minutes at 85-90 rpms. I got a larger seat from Amazon to replace the smaller seat that came with it.

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Forced exercise where you do part and the bike does part is superior to just pedaling. A regular stationary bike can be rigged up to do that....you’ll need a throttle, just a few $ from the hardware store. Google Jay Alberts/Cleveland Clinic.

It makes a huge difference which bike is used...regular ones can only do what you can do which may not be enough to achieve the results you need. A modified one can raise the level to achieve what your body alone cannot. It’s annoying that there is no bike like Alberts used, but it is fairly easy for a person who knows bikes to modify a regular one.

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It doesn't matter what stationary bike you use, recumbent, road bike on a trainer, tricycle, spin bike, whatever. The critical factor is maintaining the cadence at 80-90 rpm. I use my road bike on a trainer but I know that the Kaiser mentioned below is highly recommended. Try several out at bike shops to make sure you are comfortable. You might want to read my webpage too: nanlittle.com

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Thank you for the encouragement!

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Where do you live? The medications offered are different from country to country. I live in Canada and Sinemet is the preferrred med here.

Have you connected with a Neurologist/Movement Disorder Specialist? Really important that you find someone you can connect with, and subsequent respect goes both ways.

Other than what’s been said by others here, I would tell you that PD symptoms vary so much, and since I was diagnosed at 69 (5years ago) most people I meet have no idea that I have PD, because I don’t have the typical visible symptoms. Yet I no longer can do many normal daily activities, or the extra activities I had planned on for my retirement.

I box with 6 other ladies twice a week and we all are different and the disease has progressed at a different pace for each one of us. I hear the same thing from friends who go to the PD support group meetings. (I don’t choose to go).

Be as active as you can and seek help as much as you can afford ....my physiotherapist is my greatest support as he has known me for over 15 years. He works with many of my chronic pains and we try to avoid stiffness setting in with specific exercises, etc.

Take care of yourself.....and try to find others with PD in your area that you can talk to personally. It has helped me a lot both physically and mentally.

BEST WISHES.

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What excerise do you do

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Walking dance biking at the gym physical therapy

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Thank you for the kind and informative encouragement.

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Where do you live? Just curious. 🙋🏻‍♀️

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Central valley California

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I am 67 and was diagnosed 6 years ago. A shock - yes, but definitely not as life changing as you anticipate. Exercise, exercise, exercise! It is so good for your condition and your mood. I do yoga, Tai Chi, Dance for Parkinson’s, Walk and am enrolling for a PD Warrior programme. Not sure if these are all easily available in the USA but they also are helpful socially - talking to others in the same boat is supportive. Above all live life to the full! I have 6 grandchildren, the youngest being twins of 3, and I just grab every opportunity to enjoy them all. 😃

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In short, "One day at a time".

Be positive about the future and start doing exercise on a regular basis. Look at my profile and maybe you will get a bit of inspiration to follow my lead.

You can of course do nothing, other than take medication and watch the world go by.

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Read your book and felt like it gave me a road map as to where I want to be. I will read it again with new eyes and then use your program. It helped tremendously.

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Keep it up Lynn and don't get put off by all the rhetoric that goes the rounds. The accent is on FAST. Distance is building strength but the speed is fixing the Pd. The goal of one hour three times a week will get you where you want to be and that is BETTER!

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I'm with you. Fast is the key. Thanks again for sharing your book with us.

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I am 65, diagnosed 4 years ago. Before diagnosis, I thought I was falling apart. Now I know it's just one disease, and I can fight it by exercising, eating healthy, taking my meds, and interacting with others who have PD. Life does change, but there are so many blessings too.

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Exercise and diet oh yes, but, NOT ALONE! Get online and find classes--movePD (or whatever the heck they call it) Big and Loud (Ditto) Cycling, Boxing, dancing...it almost doesn't matter but that you are doing them with others. Days you are not in class, walk fast and swing your arms.

In our class we laugh a lot over ourselves. We discuss the latest research. I think that helps as much as anything. And you are right it's a shock but that really does wear off.

You have a whole community of kindred spirits who are not dead yet! :o)

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Love it! Thank you!

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Where do you live, that all those things are available?

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I'm mostly in orlando, but spend time in new hampshire too (My DH actually commutes back and forth!) There are classes in both places--not all classes tho. I do cycling and the big and loud thing in in FL. In NH I can only find big and loud--haven't joined yet.

It took a LOT of searching to find this stuff. For some reason advertising is pathetic. I would love boxing but can't find in either place.

BTW I have VERY early PD and probably don't need big and loud but go anyway, for camaraderie. When the others exercise on chairs I stand. I say--whatever you can find, do it!

Where are you?

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I'm in northeastern PA, near the thriving metropolis of Wilkes-Barre. There is actually a Rock Steady Boxing place about an hour away, but their schedule doesn't fit my work schedule, and they are very expensive.(They have no competition, so they can charge a lot). It would take an hour to drive there, the class is 90 minutes, then another hour drive home. That's 3-1/2 hours total, And you have to pay monthly, you can't just pay for the classes you attend.

There is one certified LSVT-LOUD therapist in a six county area. She sees clients twice a week, and it's $45 out of pocket each time you meet with her. I started, but I felt it was doing more harm than good so I stopped. It sounds as if your LOUD program was a group session, mine was one-on-one in a tiny cubical in a rehab hospital (30 minutes drive time) at 7AM.

I do the BIG exercises every day. I also go to a gym about 4 times a week to participate in their classes. It's nothing aimed at PD, but it's an hour of good exercise.

The doctors here are not well educated about PD. There are only three neurologists in the region, and none of them are MDS. I go every six months to Philadelphia, at the University of Pennsylvania Hospital. It's three hours away, and that's the only support I have, except for the people at work, who are terrific. There are no support groups locally that I can find, and I've looked. I contacted a doctor at Hershey Medical Center who was supposed to be the Coordinator of all the support groups in PA. He was going to call me back when he located a group near me. He never called back.

I am so jealous of those parkies who have " team " of professionals working with them: Parkinson's nurse, a MDS neurologist, a PT therapist and even a psychologist. I also envy those who a have access to activities specially geared to PD: dancing, exercise classes, etc. I know there would be more if we lived near a city, but I have a good job here, and we wouldn't be able to afford the cost of living in the city.

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Hmm. That sucks. You are right...a "class" in a cubicle is not the point. And you wouldn't find me driving an hour either.

I wonder whether you could start something? Stick up flyers in your local neuro's offices, just for a support group? Then, if a bunch of you get together (and by "bunch", I mean 3) why not stretch together while you chat? Who knows what that could turn into?

That, or, ask the gym you already attend whether they'd be interested in starting something? That's where I go--my regular gym is interested in expanding to attract older folks/differently-abled folks, and so is offering classes like LVST (yeah, right, that's what it's called!) and PD cycling. We just use the regular bikes. And they DON'T ask us to join, just charge per class, not too much.

But the fact that you already go is fine. I'd get into spin, if you haven't already, and just kinda ignore the instructor. You know the theory? Turn the resistance down and crank the rpms up as fast as you can. Dnt do standing or anything, just spin.

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I've thought about it, but I have no experience with support groups and wouldn't have any idea how to start one and what you do at one, etc.

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Um, talk? :o)

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If your symptoms are mild there is everything to gain by attending classes not focused on those with PD, especially if most participants are middle aged and older. You can adapt any class to your level. My aerobics teacher demonstrates low and high impact options, for example. Rock Dtrady Boxing and Dance for PD are about a half hour away and cost money, so I go to my local gyms where membership is free through Silver Sneakers.

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LYNN,

As you have seen, this website is a good support group. It helps to know that other people are coping well. Writing has been helpful to many people. The disease it's not new.... When I was early in the disease, I made a biblical study and speculated that King David of Goliath fame left a written record consistent with a leader's course forcefully "retired" by own men for a neuro-degenerative process. His written recommendations from 3000 years ago are just as today's.

If interested, I have made the book free on Wednesday and Thursday for kindle download. Just go to Amazon and request King David, Parkinson's first hero or go to my website

crvoyles.com

Now 5 plus yrs into this challenge

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Sometimes it's good not to read too much about the future. Hopefully you will get some meds and supplements that make you feel better and you can enjoy some symptom free time for a while. It does seem to get better for a while at least.

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Lynn I too am 66 years old and was diagnosed with PD two months ago. 10 minutes with a Neurologist and he says I have probably had PD for 20 years and I have 7 years to go. Really made my day. Never the less I am waiting and I suggest to you a second opinion. Find a specialist that specializes in movement disorders. PD is misdiagnosed as much as 25% of the time. After seeing this Neurologist I did a lot of studying and good information is also found at this website. I have also discovered that exercise everyday helps a lot. When I get home from work my wife makes me walk with her for an hour. Half of that is uphill, ahhhhh. I also found out that stress and anxiety can make symptoms a lot worse. If it is true that you really have PD, it is not the end of the world. Stay strong and laugh more. Personally, I have not started meds. From what I have read recently, meds can make things worse. Not suggesting anything. If you have pain or some bad symptoms maybe meds can help. All I take right now is turmeric in the form of Golden Milk at night, Benedryl for sleep and 25mg of CBD isolate in the morning. My right arm is stiff and I have a hard time writing but I have no real pain. On occasions I get right arm tremors, but I pretty much shake it off. Like I said, this is not the end of the world. You have got to find a way to relax.

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Good advice. Thank you. I will also get a second opinion.

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Get another doctor! Just kidding...you probably will get the same uninformed reaction from all of them. He forgot to finish his sentence, “you have 7 years to go...if you do what I say and nothing else”. Further, “to go”?...where? People don’t die of PD; they die with it.

Allopathy can diagnose; they can prescribe drugs and rehab. They do not give the other part of the equation.....what to take in the way of supplements and do in the way of activities to fight the stress, immunity problems and depression/apathy accompanying PD. That info just isn’t a part of their lexicon. Getting tested for sleep apnea is, however, but you will have to demand it. Just a finger monitor overnight....not his opinion...will determine that.

My husband was diagnosed in ‘03 with the same info. We too chose NOT to take the drugs which would ultimately be necessary . Instead, we used Zandopa and ordered it from India- used successfully for two years. Lots of Q10 for energy. Low carbs, lots of coconut oil for a source of fuel for energy. Maybe not for everyone but great for him. Using a forced exercise bike and up to the neck submersion water exercising were the best....boxing would have been great had we found it soon enough....he used the Wii for it.

Using a wide source of information i devised a supplement schedule for him...starting with Dr. Hyman’s recommendations. A huge number of them and expensive but no doubt it helped. Please read all my posts here....we did everything but DBS which doesn’t work for gait issues.

We used Benedryl for sleep too but it’s really not great for you....short of using a 2x4 between the eyes, getting Sweetie Pie to sleep was a big prob....undetected apnea was a major cause which we didn’t know until his last year....even though he had been diagnosed 15 years earlier....no one told us that if you have it, you have it for life. We used melatonin which can be taken in larger doses than you may think and ultimately, tried and true valerian.

My darling, funny super smart husband and best friend lived until November of 2016 and then died quietly of a heart condition brought on by years of fight or flight adrenaline hardening his arteries and heart tissue....with PD, not of it. Unfortunately we did not discover l-theanine for anxiety until after the damage was done but we were warned it would take its toll if we didn’t get that adrenaline under control. We couldn’t until too late and it killed him 13 years after his PD diagnosis.

Concentrate on keeping all systems in shape...good thyroid, glucose, everything....do NOT accept any comment like, “well what do expect? You’ve got Parkinson’s.”

Get on YouTube and everyday watch the old Flip Wilson, Sid Caesar, Carol Burnett and Jonathan Winters shows....get a laugh every day.

A remarkable effect takes place when you are emotionally involved with something that interests you. My husbands symptoms would disappear with the opening kickoff in a ballgame (not on tv, interestingly enough, but if he was there). They would come back at halftime and leave again when half time was over. Then again, maybe that was the dreaded adrenaline, gushing forth as he was re-living his glory days!😀. Not until later did we learn that a big dose of niacin would have countered the negative effects of the adrenaline.

Lots to learn....do it now.

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Thank you so much for sharing hearfelt and valuable information. Im still rereading your beautiful story for encouragement as well as information.

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There are five stages of a chronic illness, Denial, Anger, Bargaining, Depression, and Acceptance. You will experience all of these, and revisit them from time-to-time. Read-up on this, hopefully it will help.

Treat it as a new beginning, that is what I have done.

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I will definitely work on those for sure!

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PD cases are like snowflakes... no two cases are exactly the same. But for you newbies (i.e. ,those just diagnosed), I say four things: 1) First of all, the world did not end. If you are past 60, you probably have had it for years and, even without meds, it may be a very slow progressing case. So don’t assume the worse. 2) GP doctors are for the most part clueless. Get yourself to a neurologist who really knows PD and try whatever they recommend until together you find what works for you.. 3) Exercise is by far the best medicine so get up and start walking, use hand weights, shadow boxing is great. Do what you can this week and next week do more. I am in better shape and look better, so I have been told, than I was before I was diagnosed four years ago. 4) Lastly newbies.... you need to understand (and your Doctor too) that there are meds that treat the symptoms and there are others that address the cause. I take Carbidopa-Levodopa three times a day works for me to significantly reduce my symptoms. But I also take Azilect because my neurologist (god bless him) believed there was evidence that it substantially slows progression in some patients. Recent studies have supported that, but it varies by snowflake. BUT it apparently has worked well for me. I have seen blogs where PD’ers have stopped taking it because it didn’t help their symptoms only to find their symptoms got worse. My recommendation if you are recently diagnosed and are early stage is get on Azilect or something similar! It is not terrific at treating symptoms, but it very well may slow your progression. Perhaps I am just one of the more fortunate PD’ers. I am only stage 1.5 and, more significantly, I have remained there for over four years. I am 74... I still work... I walk everywhere. A couple years ago, I ocean kayaked in the Sea of Cortez... something I would not have done at age 72 before I was diagnosed. So don't let the Evil Queen win without a fight. The combination of positive attitude, exercise and the right meds can improve your health and life faster than PD or aging itself takes it away.

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Thanks for your post! I was diagnosed this week and your post brought me to tears thinking about still being able to work at age 74! Soooo encouraging...time to quit crying and get busy!!

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Sorry for the delayed response. Just got home from Puerto Vallarta, Mexico last night after thoroughly enjoying a beautiful week with my children and grandchildren. I was good about taking my meds on time, did a lot of walking and even swam a few laps. For most part PD didn’t show. Perhaps I walk a little slower at times but give me a break, I am 74.

I am glad that my words reached you and were helpful.

Live life and keep moving!

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Walking a little slower, but still traveling? Awesome!!! I want to be like you! Welcome home!!

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Very valuable information. I will definitely take your advice. Thank you. I really like the idea of a medicine that could possibly slow the progression o PD. And I will step up my exercise routine.

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Hi Lynn-

My name is Joe Peck. I do not have PD, but something called SCA1. Unlike PD it is always fatal, but it shares many similarities with PD in what is happening in our brains that is impacting our bodies. As the kind people above have all pointed out each of us approaches their illness slightly differently. I want to offer a slightly harder response just please believe me I'm not trying to be mean or insensitive, I'm trying to offer another view on what you can do because I believe in my heart of hearts you can beat PD.

Here it goes: (but first the disclaimer - you should never try anything or take any advice from some internet quack without first talking to a doctor about anything you want to try)

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For starters, I am a fighter and refuse to accept the western medicine fatality view of my illness. I had symptoms including inability to stand on one foot, the need to hold a railing while going down stairs, difficulty with speech, changes in my hand writing, and fatigue.

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I have no symptoms now and am in better shape than I have been in a decade.

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There are many, many Patients with PD (PwPD) who are holding their symptoms at bay.

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I do not believe in "he said" "she said". I read and a make use of real scientific research to tackle each problem I know I have. Here is the first piece of science I will share:

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Effect of High-Intensity Treadmill Exercise on Motor Symptoms in Patients With De Novo Parkinson Disease - A Phase 2 Randomized Clinical Trial

jamanetwork.com/journals/ja...

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That research says plain and clear that some people with PD who are able to perform exercise DAILY for 30 mins and get their heart rate up to 80% of max can STOP the progression of PD.

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So here's the question: Are you the person that immediately says, oh but thats only one study, or oh I can't do that, or oh that's too hard . . . or are you the person that says - know what I think I'll try working hard for 30 mins a day. Maybe it will work for me too, and if it does maybe I too will start beating my disease!

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Next item: Dr. Mischley is one of many, many people who have dedicated her life to helping people with Parkinson's and as part of her work she travels and lectures, and in those lectures she shares SCIENCE about what real people are doing that is altering the course of their disease, and surprise surprise it turns out that DIET makes a huge difference. So here's her video. You need to watch the whole thing a couple of times. It has invaluable information on what you can EAT (or not eat) that will help you fight PD.

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vimeo.com/191664871

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Lastly, I want to talk about supplements. Sadly, I already spent too much time online today and can't tailor a discussion on the science of my favorite supps, but I promise to revisit this discussion with one more post. In the meantime I'll simply provide a link to one person with PD's and his list of supplements. This individual is now symptom free as well. I'm not suggesting you try any supplements on his list. I'm just showing you what is possible if you read and learn and try. Again I believe in my heart - you CAN beat Parkinson's!!

healthunlocked.com/parkinso...

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Best wishes - Joe in NY

P.S. If you click on my screen name, you can see all my posts. There is a TON more information there much of it relevant to Parkinson's as well as SCA1.

P.P.S. You will also find Joseph Peck (Csizmadia) on FB if you want some assurance that I am not a looney toon. I am a loving husband, father of 3, and a graduate of an ivy school with a degree in science.

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Hi Joe! Thanks for taking the time to give me all that valuable information. I will use it as a resource. From the beginning I agree with every word you wrote. I will reread it too. I have only read material that dicusses beating PD and I know you have beaten yours. Now is my time to integrate all your advice into my life. I have already begun. It's been two years since I was in dance class but have started again. Darn the mirrors. Walking is my biggest target. Again thank you and I look forward to any info you can throw my way.

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Hi LB,

I'm a 56 yo married male.

I was diagnosed in early November. I've had symptoms for 2 years. I started off fighting for the first week after getting the diagnosis. Unfortunately I spent too much time reading how bad PD is and pushed myself into a major depression and anxiety. At that point, I still continued to exercise until about two weeks ago when the depression and anxiety became even more overwhelming. I had to leave work at the beginning of December as I could not focus or concentrate. I totally crashed. I am still going through the stages of grief. By the way, I am a healthcare IT consultant. I noticed that in the past 2 weeks, I noticed my symptoms becoming worse.

That being said, I'm trying to force myself to exercise soon.

Please be careful and not end up the same way I did. I should know better as I was a committed exerciser for many years.

I worked in hospitals for 27 years and my friends say to me it's time the healthcare industry helps me out now.

Good luck moving forward.

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I know exactly how you feel. Thanks for being honest and articulate. But from all the responses I got I believe you could hold off PD with exercise. I've only read books about long-term PwP who have little or no symptoms because they exercise and push themselves. You are well prepared for that. 3 years ago I was too but quit everything too. Now I'm slowly going back because it is worth a try. Two of the books I read we're by John Pepper and Howard Shifke. I could relate to their stories and inspired by their commitment. I've also googled alternative medicine that is supported by authentic studies. I still spend my days fighting off panic attacks and dark depression. This website has made it all easier to handle. But I so wish I could go back to before I was diagnosed and was in denial. But that's impossible. So I'm going to try to work with my roller coaster emotions and grocery shop when my legs have no strength. My grandkids are helping me because they don't care about my symptoms at all. And they aren't worried one bit about me. So then I forget too and for awhile I'm not worried either.

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I've written this few months ago as others were asking about coping with PD Rx.

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Seeing people's posts about being devastated at their PD diagnosis, made me to reflect on my own journey. I was diagnosed this March, just 3 weeks after my dearest friend passed away from cancer. Seeing her turning from a strong, vibrant, funny, playful woman into someone looking like being released from a concentration camp (just in 4 months) was absolutely heartbreaking. However, she faced her illness with such faith and emotional strength, completely trusting God with her life, setting example for everyone who was fortunate to know her, that this terribly painful experience helped me to accept my diagnosis with peace.

There is a quote written by someone which keeps on coming into my mind in times of trials:

"How do you build a life so that when you hit an iceberg you don't collapse like the Titanic? How do you do that?"

And the truth is that sooner or later every human being will have to face "an iceberg" in their lives, it's only a matter of time. So it's good to be prepared by learning from other people's experiences, building up yourself spiritually (this helps me immensely) and meanwhile be thankful for every moment we are allotted to live in this world which is temporary. Just being aware that we are temporary beings clinging to this temporary world helps me see (in moments of weakness) how futile is to be upset about my diagnosis.

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When we found out i had PD we were happy because it was on Monday a 2nd opinion and the Friday before the first DR. said i had ALS (Amyotrophic Lateral Sclerosis) a death sentence.

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I am sorry that you have been diagnosed with PD recently. I was diagnosed 10 yrs.ago so I have some experience. Lionore offers some good advice. I am somewhat perplexed with your (and others) reaction to being diagnosed. I don't want to seem unsympathetic but really get on with it. ADAPT, IMPROVISE, OVERCOME!!! You are not going to die from this disease. Yes you will die with it, but in the mean time, LIVE with it.This is a very individualized disorder so what works for one may not work for another.

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Thank you for your honest and positive comments!!

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All I can tell you is how I handled it, i don't know about anybody else.

At first I guess I was in shock, then fear, then different phases and different levels of denial. I think I still have some denial going on.

ultimately what can you do except for take the next indicated step.

I guess what helped me a lot was having gratitude for what I had and not thinking about what I didn't have.

Also trying to be in the now because the future is a scary place for me but I can get through almost anything if it's just in the now, very difficult but I try.

I have good days and bad days and everything in between.

I have a couple suggestions that have help me, writing a gratitude list every night maybe three things you're grateful for and why, exercise helps a lot because we struggle with depression and it's good to get outside and get moving, change your perception and focus on all you still have and not on what you may lose in the future.

We cannot control anything, not even our thoughts or feelings but we can control or attitude and our actions.

Easy to give advice and hard to follow.

It helps me to watch inspirational stories of people that have it way worse than I do and still have an amazing voice and do amazing things. If you go on YouTube there's a documentary of the kid that I grew up with it's called "not dead yet" it's about a guy named Jason Becker and it inspires me when I'm feeling sorry for myself.

I heard a saying and I have it up on my wall… When you change the way you look at things the things you look at change

I'm sorry that you were diagnosed, it isn't fair that we have this but life is not fair & we can't change it , we can only change the way we deal with it.

If you ever want to talk I'm always here love Joyce PS I am 52 and I was diagnosed when I was 47

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Thank you for your beautiful reply. It helps to know you are there.

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How are you ❤️

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I'm doing great. I am going to a movement specialist. My neurologist was dismissive to me. I am going to PT, dance and am trying to get into boxing class. Looking into azilect with new doctor. My original neuro wouldn't prescribe it for me and gave me no good reason why. Thus my switch to new wonderful neuro. Greatly increased walking and trips to the gym. But still room for improvement.

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