I'm a 56 year old married male. I was diagnosed 3 weeks ago. It started two years ago with a slight tremor in my left hand. It slowly progressed and about a year ago people said I was limping, which I ignored and thought I had back issues. The neurologist a year ago said I had essential tremors so I was happy to hear that and never thought about it again until the last few months I started profusely sweating when at conferences speaking with people, looking like I was going to pass out. I was also fatigued often and then what got me was when I went out on the dance floor and could no longer break dance, my feet just didn't go where I expected them to go and my left arm was going out of control. People at the conference said I looked like I had Parkinsons. I said, no it is just essential tremors. I then went to a movement disorders neurologist that told me I had PD.
That was the last thing I heard that day. I spiraled into total anxiety, depression, sleeplessness, stopped eating, lost 20 lbs in 3 weeks. I went on medical leave for a month recently cause I could not focus or think anymore. My wife has been great, but I wake up at 3 am every night and just stare at the ceiling, feeling sorry for myself.
That being said, yesterday I been trying to crawl out of my hole and I walked 3 miles and went to the gym. Today I walked about 1.5 miles, but still had issues getting out of bed. I was praying that this was just a nightmare that I'd wake from and it would all be over.
I guess I'm still not the acceptance stage.
I'm glad this site is here and hopefully will get enough encouragement from others to move forward and accept this diagnosis.
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sothernman2017
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I went almost through the same stages like you. It started two years ago with intermittent tremor in the right hand and I did ignore it. In April this year, after my mom death, the tremor became more intense and more often. I saw 5 neuro doctors - the first 2 said I have ET, one 50/50 ET/PD and the last two said I have PD (both motion disorder doctors). This was in August. For a month I went down. I realized that almost put down my son, too. So I decided not to allow the PD take over me. I just accepted the situation and started to be the way I used be like nothing happened. I did not start the meds the doctors gave me but I started yo do exercising. Except the tremor which went down in intensity and frequency all the other symptoms are gone. I'm an industrial software engineer and I can write code the way I used to. I know I'm not 100% as before but I can say maybe 90%.
So just be positive and try yourself to get out of the ditch.
It may seem hilarious but for me the best treatment for now is the ONION. Every evening when I have my meal I eat a half of non-spicy onion; I just bite from it like it is an apple. That helps me to sleep very well and have colored dreams and cuts down the tremor intensity. Also adding some weights exercising or walking helps a lot. So everything depends on you.
I am off the charts, an exception, a unique case. That said, I feel compelled to share that I love waking up at 3 AM. Mostly I just sit in the couch in the living room practicing Qigong meditation. I am an agnostic and I'm not pushing a belief in a particular deity. That said I spend the time and for that matter much of the day in Divine Bliss. Parkinson's is the best thing that's ever happened to me. More of my story here: healthunlocked.com/parkinso...
I cannot promise anyone else will have the same experience, nonetheless I feel moved to post this to provide a useful alternate perspective to those in despair.
Welcome. Join the club. We all go through pretty much the same thing. Denial/disbelief, shock, anger, grief, and finally acceptance. After your post is up a few days you will get a lot of good advice and supportive comments. They will have a lot in common. A few truisms; exercise is the best antidote. Drugs, supplements, and nutrition affect different people differently. Because of that, you have to do your own research. Antioxidants and anti-inflammatories are important. Many of the PWP use the same stuff. You will become frustrated with your neurologists and doctors because they know very little about supplements and nutrition. Lastly, I think most of us overreact when we first get the diagnosis. Yes, it will change the way you go about your life, but when you reach acceptance you may well find is not as bad as you originally imagined. You are in control of your own attitude. We all play the hand we are dealt. This is a good forum. You’ll get a lot of good advice here. Great people.
Good post MB! I concur... I am 10 months post diagnosis and in reflection of 2018, it was pretty dang good even with a PD diagnosis!! My mental health was much different February to August at which time my neurologist helped me get on a good nutrition regimen. Good bye anxiety and depression, in my case. Here’s to another fantastic year in 2019! Thanks for your encouraging and informative posts, MB! You have been so very helpful.
sothernman2017 Welcome to this forum! You will find the best info. about living practically and coping with PD comes from people who have been diagnosed with PD. Like you, I had essential tremors, and it slowly progressed, making my General Practice Doctor to think that it was a benign condition. I went through the limping, sweating, and not being able to dance routine too. We lived in a small town with no specialists. So, in my case, I kept progressing for a number of years. to having falls, with blunt force trauma, freezing episodes, and big time trouble walking. My Doctor still had no clue. Finally, after a number of falls, with a concussion etc. my daughter decided she would move us to the big city, where there is a regional medical center, with neurological specialists. To make a long story short, the family doctor in the big city saw that I was having problems and sent me to a movement disorders neurologist. He found that I had resting tremor, and essential tremor and other cardinal signs of PD, such as rigidity in all 4 limbs, and involvement of the autonomic system. So I was diagnosed with PD, well past the beginning stages, and put on medicine. So, for you, it might be a blessing in disguise, if you are prescribed medicine and treatment that can help you, so that you don’t become too debilitated. It’s important to exercise and try to maintain a positive attitude. Depression, anxiety and apathy are all problems that some PD patients have to face, and it’s important to not let them get the upper hand in your fight with PD. Good luck!
Thank you everyone! This is very helpful. I am actually heading to another movement disorder neurologist tomorrow. Sort of for a second opinion, but to be able to ask questions as the first neurologist basically said at the end of the appointment, "you have Parkinsons, here is a prescription, find a closer neurologist to see in 6 months". And when I looked like I was about to cry, he said, "this is good news". I somehow didn't see that as good news. I guess he meant it could have been worse. So tomorrow, I'm coming with questions.
To be honest the other illnesses with Parkinson's like symptoms are in general far worse and life shortening.
Mbandersons post above is excellent.
You need to take charge with a multi pronged approach though. Diet (less sugar, more greens!), excercise, supplements (my favs are magnesium, NAC and probiotics).
Hopefully you wil find you only get worse slowly and will feel more optimistic soon.
Hi Astra7 would you please recommend some probiotics. I've never had a problem with constipation, but the opposite I think I digest too quick and so my body does not get to absorb nutrients as it should. Any suggestions?
My integrative GP suggested mutaflor first off before any testing. It is quite pricey and difficult to know how well it works (as she had me taking so many things). It is probably worth a try though- maybe try a box and see if things improve.
While my experiene was not as severe as yours there were enough similarities that perhaps what I did--and am still doing--might help. Essentially, my neurologist put me on Azilet and carpadova/levadopa (25/100) 3X a day. Within a week almost everything was back in place. The one major exception was the tremor--I had neither so there is no telling what impact, if any, the c/l had tremor-wise. The second step was walking--up to 5 miles a day (10,000 steps) 3Xweek and 45 minutes in the gym for exercise 3X a week.
A big help is that we have a support group here in Green Valley that has chair exercises 3X a week and that helps, not only physically but socially as well. Good luck!
Not sure if this will help you or not but my husband is about 17 years into PD and has just gotten in the last year to a year and a half needing help to get to the bathroom and into or out of bed and then not all the time. Focus on the good things in your life and keep active and keep your mind active too. Don't be afraid to talk to others when you are having a bad day. You will be surprised how many people will understand and offer suggestions because a father or brother or uncle or even a good friend has had it. Listen to suggestions that you think might help and try them but above all >>> stay in touch with your doctors and follow instructions and keep a positive attitude. Good luck in your journey.
My story is identical in almost every way to yours except I turn 47 this month. It takes time to accept and grieve so be patient with yourself. With medication and exercise some days I don't even feel as though I have Parkinson's. It is not an end to a good quality life. I still work, travel and live as fully as before I just have different limitations. Try to talk to someone professionally to help you work through the shock. I take only sinemet and nothing else. For me this works thus far and for me less has been more. Give yourself time but try to be as active as possible. Exercise is a really big must for most it seems, myself included.
RE 'johnpepper' When evaluating the credibility of JP's PD "reversal" tales (which are now regularly injected into forum posts as a virtual pop-up ad) it's important to keep a few established facts in mind: JP's original diagnosis, Essential Tremor (a non-parkinsonian condition), is 8 times more common than genuine Parkinson's; JP's ongoing claims of once having PD and since experiencing “reversal” have NEVER once been supported by a single qualified neurologist; and, JP himself admits in his own earlier posts to an original diagnosis of Essential Tremor (not Parkinson's): "When I was diagnosed in 1992 my neurologist said that my tremor was called an essential tremor, [m]eaning that I shake when I try to do fine motor movement. That is the opposite of the resting tremor, which only happens when not doing anything.” Source: healthunlocked.com/parkinso...
Until JP presents the results of a positive DaTscan (indicating a GENUINE parkinsonian condition), a healthy dose of skepticism remains your best medicine.
Have a look at Norman 's writing about John Pepper. He says the opposite of what you are saying and he examined the whole situation in great detail. I suggest that anyone newly diagnosed gets carefully checked out for deficiencies in B12 and other nutrients and for an inability to metabolise B12, and reads up fully about the downside of the medications rather than just embarking on them.
N.Doidge is a psychiatrist with a book describing the 'miracles of neurogenesis' to sell. He needed a compilation of good yarns to prop up his book's central theme and JP's tale served that purpose. Ignoring a few pesky details to enhance the story is what writers do... it's called 'literary license'. The fact remains: not a single qualified neurologist - in the 15 years since JP's "Reverse Parkinson's Disease" farce debuted - has supported his "reversal" contentions. Nor has a single credible case of said PD "reversal" come forward to reveal their miraculous "reversal" during that same period. Pls consider rejoining us here on planet earth...
There are plenty of cases. I don't believe in having my head buried in the sand. I wonder why it is that your mind is so closed? Anyway, unfortunately it seems that most of the research and consultants training is funded by the pharma industry so a cure is not in their interests.
Your example highlights the problem: The inability to distinguish hearsay and random anecdotal claims from genuine science and empirical evidence poses the greatest threat to the lightly educated and makes them prime targets of the latest scam.
sothernman2017 we are all in denial at first. The first time that Sinemet worked for me, it was like a magic wand, and I had no choice but to accept that I had PD. If you do not have PD, the usual PD meds have no effect. Gut bacteria play a role, eventually a cure will become available.
I am 58 and diagnosed 4 years ago. The first year was the hardest for me. I ride horses and 6 years ago I had a horse run into me and then one stumble and fell on me. Thought I had a pinched nerve. Left side was not working well could not kick on left side. And my left arm was not swinging. Took 2 years to find out what was wrong. I continue to ride and compete and have family support and done great friends. My daughter started a support group and it is great to be able to talk to others that understand. I make sure I get my rest take lots of vitamins medicine and exercise. I am maintaining and feel great. Find someone you can talk to and that can help motivate you. Don’t give up
Don't lose hope. I'm only 52. Lots of people on this site have great ideas about supplements and vitamins that help with symptoms and great personal advice you just can't get at the doctors office. As difficult as it is, try to look in the bright side, you still have a spouse for one. Work on making your spouse happy, you are going to need her to stick around. Read the articles and information on this site and try some of the ideas.
I thought my symptoms were back injury also from a diving accident at about 14 yrs old. (foot turned and leg wanted to drag/ drooled at nite/ balance was off and I became self_conscience and very shy. ,and my eye focus was very slow) other things developed later. I actually think it is easier to compensate for physical problems when young. I trained my foot to walk straight with consistent focus with each step, so it only dragged when I was very tired. Keep you chin up. You can do it. Just take one day at a time. eat foods that help PD, exercise and take the least amount of l-dopa possible to help you.
The early days are difficult as you are still 'in mourning' for the loss of the future you had expected. But the future can still be very good.
Tell your neurologist all your symptoms at your next appointment so that s/he has the full picture. Meanwhile excercise to maintain your movement can also reduce pain - and if you can find an activity you like it should improve your mood as well. I
Be kind and polite to your family. They are also facing a different future (and they're not to blame for it).
Meanwhile you have time to make lists of places to visit and things to do (for fun), and consider alterations to your home if needed.
It's not an easily accepted diagnosis. You ask how? why? Good news is through R/D, new treatments to ease the symptoms are promising. There are good days and not so good days. Having an understanding and compassionate companion is a blessing.
I'm 52 female and married (2nd time round in 2016) and was diagnosed on 1st April this year. First time I've posted. I found a daily diary useful initially. Diagnosis was a relief to me and my medication has eliminated symptoms. Life is for living and we can live with our Parkinson's diagnosis. Exercise is important either with or without Parkinson's.
God bless you. You are doing the very best thing that you can. When you get out of bed put one foot in front of the other and keep moving. Walking is a great form of exercise. I walk 2 - 3 miles a day and do not allow myself to sit in one place too long. I feel your pain. When I was diagnosed I had no medical history and never had taken a drug of any kind. Total health nut. None of us have the answers but we seem to be in the middle of a nightmare. Not too many words help our feelings of being lost when first diagnosed but we have to move forward and you will. Get through your feelings get through disbelief but it will not stop there. The good thing is that there is a support system right here and I believe at anytime you can vent here and share here and it just might make you feel better. When I think things are just not real I can read many feelings of others who need one of us to lend an ear. I see many others who have it so much worse than I do and I am thankful that I am only where I am right now. Good days and bad days.....one foot in front of the other take a deep breath and keep moving. I wish you well and my prayers are with you.
I just read the book the plan peridot, and I'm going to try that diet. I'm on my second day, and already I woke up with a lot more energy than usual. I would highly recommend the diet ideas. I'm avoiding medication except for Azilect at this point. I've been diagnosed a year and a half. I think recovery is possible. Definitely you can feel better or worse, so there is a lot of affects you have on it. I'm also trying the vitamin B1 supplementation. PD is a challenge, but is it in life in general such a challenge. It helps me to put things in perspective, and to feel gratitude for all that I can do. Focus on what you can do rather than your limitations at this point. Best wishes
Direction, the book is called the plant paradox. It's basically about how many of our common foods have lectins which are poisonous. Eat Mainly vegetables and wild caught fish, lots of oils and fats.
Southernman, are you still out there? Your post was from two years ago but I came across it today for the first time. I hope and pray that you are doing well and that have found a way to channel your emotion into positive action. I am living through the same nightmare with a close family member as we speak. Fear, anxiety, sadness, guilt, anger and shame have hijacked our minds replacing the joy and gratitude we once held in our hearts. I know this grief is temporary, but it's hard as hell and I thank you for your bravery. You may not realize it, but you made a difference by sharing your feelings. Godspeed.
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