Hi,
I was just diagnosed with PD. It didn't come as a surprise as I've had Rem Behavior Disorder and numerous other non-motor symptoms for the last 3 years. I'm 71 and had planned on doing other things with my life, PD was not a part of the plan. Oh well. Looking forward to meeting and speaking with others in the communityl
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FJohn1
Welcome
No need to change your plans. i am in my 11th year and doing better than my 1st year. New meds and exercise keep my PD in check.
I am 62.
Welcome you can find answers to all your questions here. Please ask I love to answer if I can.
Hi I'm quite newly diagnosed too.much knowledge about PD.Is it normal for upper back and chest muscles to get so tight it affects your breathing when you talk lots? I'm a teacher
I have not had that happen. Does not sound like PD to me. I would check with my Family DR. about it.
Hi there! Welcome!! I've been with this disease a while, I think, but only diagnosed 4 years ago. I'm learning so much on this site, it's an amazing and lucky find.
By the way, is that Burlington in Ontario you're from?
No, Burlington, North Carolina.......much warmer!!
My husband is 77. He has had RM sleep disorder as long as I have known him, 57 years, but just was diagnosed with Parkinson's about 5 years ago.
Hi Burlingtongal. My sympathies are with you, but don't give up! I was diagnosed with Pd in 1992. Ten years later, my symptoms had improved so much that I was able to come off medication and have lived a normal life ever since. What happened in 1994 was that my doctor changed my medication to a single drug called Selegiline (Eldepryl). That is an MAO-b inhibitor. I also started a walking program called, "Run/Walk for LIFE'. As a result of that walking and I think the Selegiline as well, I have been able to live a normal productive life at the age now of 82.
You may not fancy walking, even though it is only for one hour, three times a week. If so, then don't bother to go onto my website - reverseparkinsons.net.
because on that site I give you over 400 articles on how to deal with your Pd. I don't talk about medication because I am not a doctor but also because medication is not designed to slow down or cure Pd. My walking does not cure Pd either, nothing does.
I also give you the opportunity to purchase my book, "Reverse Parkinson's Disease", which sells at a very affordable $20. That is not the reason for guiding you to the website, but it is a very useful website to get positive information.
Good luck!
Claiming you reversed Parkinson's disease is the same as saying you've cured it. That is very misleading and gives false hope to desperate people.
Hi Dmaster. No! Reverse is a direction, not a result. There is no cure for Pd. I have lived for the past 14 years taking no Pd medication and living a 'normal' life, like anybody else who does not have Pd. I have not needed to visit a neurologist during that period, other than to consult a neurologist in 2015 to get confirmation from him that I do still have Pd. I still have most of the Pd symptoms, although they are mainly at a much lower level than they were in 1994, when I started doing Fast Walking.
Nobody I have ever met, who relies upon Pd medication for dealing with their Pd has ever reversed their symptoms. Do you think that neurologists are misleading their patients when they prescribe Pd medication, knowing that those medications do nothing to slow down the progression of their Pd? I am sure that if the patients asked their neurologist if those medications will slow down the progression of their Pd they response would be, no!. Does that mean that he/she is misleading their patients?
I sincerely believe that most Pd patients could reverse their symptoms, as I have, and lead a normal life again, if they were prepared to put as much effort into it as I have. Many patients are doing this right now, all over the world and very soon we will have evidence of this. Thinking that you cannot walk fast is not necessarily true. I have only met three Pd patients so far, who have not been able to walk properly, after I have shown them how. Don't just assume that there is nothing you can do about Pd, because that IS NOT TRUE!
If you don't believe what I say, that is your choice and you have to live with your beliefs.
Perhaps I should change my book title to "Reverse Parkinson's Disease Symptoms" but it has had that name for more than 10 years and that change would serve no real purpose.
What is your reason for saying that I give people false hope? Have you tried to follow my lead and failed? Many people have failed to achieve what I have, but not because of what I have said but because they either did not put any effort into it or because of factors unknown to either of us. In life, we are presented with many hurdles, some of which we are unable to overcome. That is life!
Well done John. Many breakthroughs are the product of motivated individuals, rather than megabuck labs. You may be right, or you may be wrong, but more power to your elbow.
Our health providers are great at cutting and shutting, but not so good at thinking outside the box. Scurvy illustrates the problem.
mentalfloss.com/article/241...
Thanks Harleybob. Words like yours go a long way to help others to be less judgmental of others.
I read through that story and found it very fascinating. Simple things, like walking, are overlooked in this frenetic life we lead today. It is so much easier to drive our cars to go everywhere we need to go, forgetting that our bodies need exercise, not just now and again but every day. We forget these simple things!
Hi JohnPepper,
I've already ordered your book. I was very excited when I read your story on this forum. I look forward to learning from it. I don't like to exercise, but I will if it keeps PD at bay. I will go to your website, as well. Thanks.
Hi Burlingtongal. Thank you for your support. I wish you well in your endeavors and if you have any problems then just write to me. If I can help, I will.
Burlingtongal if you do not exercise you will loose your battle with PD. You are a victim of a society that values fitness so little. At one time in America Fitness was a major part of school. I was lucky that i worked for a living for 30 years. It kept me in good shape. It has helped me wuth my battle with PD. For the first 8 years of my battle i used meds only and was loosing. Then i started Crossfit and now i am almost PD free.
I love what John Pepper is doing to encourage people to get exercise but his fast walking will not get the job done alone.
I am trying to be nice but your post makes me very angry. Not at you but at our society. You where not born not liking exercise you were taught to not like it.
You need to spend at least 1 to 2 hours day doing some form of exercise. Including weight training, aerobic,stretching.
Exercise will help every aspect of your life.
You will have more energy to get you through the day. You will be able to do every day chores faster giving more time to enjoy life. It will improve your sex life. Guys it makes all your muscles harder (and i do mean all including that one).
Today I reach a goal at Crossfit i set a personal best in the dead lift.
405 pounds (183.7 kg)
Bailey_Texas, I hear you and agree with you. I know I have to do it, but I need to find out what kind of exercise, beside fast walking will be right for me. Crossfit is out of the question. I have degenerative disc disease in my neck and low back. I need to find a program that allows me to lift weights safely. I don't want to create another problem on top of PD. I understand your anger with we lazy ones that don't enjoy exercise. I was raised in a very sedentary way. Parochial school with no Phys. Ed. classes. No sports, either. But, I know I have to exercise to fight this thing. Thanks for you help and suggestions, I'm on it.
Crossfit is exactly what you need. Find a Crossfit gym near you and talk to the coaches there. Most have training dealing with rehab or have had problems. They teach use the proper way to lift and watch us as we work out' It is like having a personal trainer. My coach works with kids with disabilities. One gym here is coached and owned by a chiropractor. He uses it to help rehab his patients. A good coach will evaluate you and change the workout to suit you. That is what Crossfit is all about it is tailored to fit every one. In my class today there was a lady there that weighs 220 lbs and is only 5'3' and 50 years old and she did the same exercise as me with lower weight and less reps.
I'll look into it. I have a neighbor who is addicted to Crossfit, but she's 40. I've seen pictures of her lifting and I just assumed it was a young person's workout.
I am 62 and i have seen a 90 year old woman with both knees replaced doing Crossfit.
Bailey, what do you not like about Rock Steady Boxing? I've tried to encourage others to try it because it helps slow the progression, but you've never said anything positive about it. What's your opinion?
Hi, my wife was diagnosed with PD in September, she is also 71, it to was no surprise as she has had a slight tremor in her right leg for 3 years, she had 2 visits to neurologists over the 3 years both said she hadn't PD on the 3rd visit in September it was finally confirmed. She has been prescribed madapa and seems to be working for her, unfortunately she has been very unwell since September, after several visits to our local GP she was diagnosed with pneumonia, she is now in hospital, never rains but it pours😒
Hi Tudorwood, Sorry to hear about your wife. I've been seeing the Neurologist for 3 years for the RBD, but last visit he finally gave me the diagnosis. Have bradykinesis on left side. No tremors yet. Hope your wife heals quickly and feels better soon.
Hi Tudorwood. I hope your wife gets better soon. When she has fully recovered you both should start to do some exercise to improve your general health and her Pd in particular. Pneumonia is a common complaint to be visited upon Pd patients, due to poor muscle fitness.
Hi Burlingtongal,
All I can say is welcome to the club! I'm 58 diagnosed 6 years ago and still chugging .....remember there are worse things in life... try and stay positive.
Hi Sleeplessparki,
I agree, I'll take PD over a lot of other diseases!
Hello, welcome
There are a lot of postings here, people sharing information and tips, There is a search top right, and also the titles of similar subject posts will appear to the right of any post that you have pulled up. Many questions have been answered several times but if you have a specific one just post it. Good people here. Same boat.
Welcome Newbie to PD . It is a most mysterious disease I ever had ! Anyhow, if you have any questions about PD from a 73 yr.old lady don't hesitate to email me. I have had at least 29 tests of all sorts and a diagnosis of 20 problems with medications I take daily approx. 20 of those a day. However I remain POSITIVE ! So if I can help email me at pamcota24@gmail.com All the best ! Pam
Thanks, Pam. I hate taking pills, but it seems every time I go to the Dr. he gives me a new pill. Ugh!
Welcome! This group is very supportive and active. My Dx Was Two years ago, and I am almost 70. I can't say enough about exercise and having a positive attitude! I have also declined neuro's suggestion for more medication than necessary. Also eat fresh, unprocessed mostly plant based diet.
Hi Lionore, I have to say I was really concerned when I started taking Sinemet. Neuro said take 1- 3x day, then after a week take 2- 3x day. The second week I was nauseous and sick most of the time. He cut me back to the 1-3 x day until I see him in 6 months. I thought, well if this is the "gold standard" med for PD I may be in trouble if I can't get over the nausea. I do try to eat clean. Thanks.
My plan was to buy an island and live happily ever after but was diagnosed 9 yrs ago so now I'll buy a condo and forever or till my demise happily live !
A plethora of ways to handle the obstacles you may encounter .
Peace Love Prosperity
Hi Burlingtongal. I like that! Sometimes we think that God is against us but if we are truthful to ourselves we will have to admit that we are our biggest enemy, not Him!
John, I was wondering why you were on an MAO-b and not Sinemet? I don't understand the difference. Is one better than the other?
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