New to everything PD

[Infantry151]

Good morning everyone. This is the first time looking into PD and how everyone makes everything work. I'm in my 40s and going through the diagnosis process. I will know more in the next few weeks. I'm just trying to understand everything more and to be more informed as I move forward. Thank you to everyone for all of your post and sharing of your experiences.

[Kia17]

Infantry

Welcome to this forum. I very much hope that you will be diagnosed with something simple than the PD something that can be treated easily.Even if your diagnosis was PD then you are in the right place with loads of support ,sharing personal experiences and useful information.

Kia

[alexask]

I am also in my (lateish) 40s. You have come to the right place. There is a lot of information here. I would suggest you spend quite a lot of time going through the posts. There is loads you can do to slow the progression and even reverse some of the symptoms. Number 1 thing you can do though is probably exercise. Get on your bike, trainers and make sure you do at least half an hour or preferably 45 minutes of fairly intense cardio every day you can.

[NanCyclist in reply to alexask]

This is not just a suggestion. It’s the first step in the formula you will build to have the best life ever. Three things to constantly remember: It’s not your fault; you. have choices; you can do this. I also recommend that you don’t focus on finding a cure. Instead, make the most of every day, no matter what. All the best.

[Tribselyov in reply to NanCyclist]

Good to hear from you, Nan. As she alluded,the most meaningful changes are psychological and social

[Hidden]

See/read my Profile, posts and replies

[JohnPepper]

Hi. I'm not very popular on this forum, because I warn people about the effects of medication. I am not against taking medication, but certain types of medication have serious side effects, which can be much worse than the Pd. Levodopa medication is regarded as a Godsend by some patients and as a curse by others.

I would suggest that you look at ways to help you overcome your Pd, before it progresses into something far more serious than it is now.

Of you look at my PROFILE you will see that I have been able to overcome many of my movement symptoms to the extent that I have not needed any Pd medication since 2002.

Have a look at my website, reverseparkinsons.net and make contact with me. I will send you my videos and a lot of helpful information about dealing with Pd. I do not charge anything for what I do, because it is my way of helping to fight off the effects of Pd.

[Don_oregon_duck in reply to JohnPepper]

John Pepper, The big drug companies are the ones that don't like you. You are raining on their parade.

You would make a terrible government lobbyist. You stick to your core values. You seem not to care about how much money is being offered to change from what you believe to the belief of those with the bank accounts.

Keep on keeping on.

Don

[bassofspades in reply to JohnPepper]

JP, youre popular with he RIGHT people! And I know you wont be discouraged, thank you.

[JohnPepper in reply to bassofspades]

Thanks bassofspades. It is people like you who keep me positive. Such a pity that there are others with hidden agendas who try to make our plight unbearable. If only more of us would be positive about our prognosis and not accept that "THERE IS NOTHING WE CAN DO ABOUT OUR PD, OTHER THAN TAKE MEDICATION!" That is the worst action , or lack of action, to take.

We are all stronger than we realize!

[JohnPepper]

Thanks Don. I have never thought for one moment that I would stop the drug companies from doing what they do, because MONEY is the CULPRIT. As long as people are tempted by money, this type of situation will always prevail. I sleep with a clear conscience, not because I am immune to anything evil, I am not. I suffer from the same weaknesses as everybody else, but there is a LIMIT to what I tempts me. I will not die a rich man I will probably die quite poor, but I will have a fairly clear conscience.

To everybody out there who thinks that drug companies have their welfare at heart, please think very carefully about that. ONLY YOU CAN HELP YOURSELF, NOBODY ELSE CAN DO EXERCISE FOR YOU! I know, taking a pill is so much easier. And HEY! A CURE IS JUST AROUND THE CORNER! If you believe that, you are in for a terrible shock. You only have one life, MAKE THE MOST OF IT!

[wifeofparky]

Knowledge is power. Learn all you can about PD. You can get free information at Parkinson.org

If you are able, see a Movement Disorder Specialist. They are neurologists who specialize in PD.

[healthabc]

start exercising today-

[TheGimba]

My husband has had PD for the past 8 years. Looking back I can say that the time period that we did not have a diagnosis was the most stressful. I didn't know if he was having a stroke and I had three hours to get him to emergency or he would suffer permanent physical damage OR if he was just showing signs of PD and we had time to figure things out. I didn't know if I should go to work to feed our family or risk losing my job to care for him during these bizarre "off" times that I didn't understand. Although a diagnosis of PD can be scary, we now know how to proceed with our lives and medications are working pretty good right now. Oh, one of the things that docs do to see if you have PD is give you some Levadopa/Carbidopa and see if it helps your symptoms. They didn't give my husband enough of this or long enough to show enough improvement, so they said, No, he doesn't have PD. This created a year of unnecessary stress and threatened his ability to work and care for our daughter. Sinemet can work wonders for many PD sufferers. At 40 you have different issues to contend with then when you are 70. I wish doctors understood the urgency of diagnosing and treating younger sufferers who are trying to make a living and care for their family. Losing a few years of functioning can have a profound impact on all family members.

[MBAnderson in reply to TheGimba]

I went to see my doctor for some other reason and as I was sitting down on the table, the 1st words out of his mouth were, "You have Parkinson's." He sent me to the head of neurology at the U of MN and after shaking hands and introducing ourselves, he said, "You have Parkinson's." So, I went to the VA, met with a motion disorder specialist, exchanged pleasantries for a few minutes, then he said, "You have Parkinson's." What's the point? The doctors that the VA have a better bedside manner. No, seriously, the point is IMHO a good doctor should be able to diagnose Parkinson's by asking a series of questions, watching a person walk and observing. I believe if you put 10 people in front of me and one had Parkinson's (symptoms for a few years,) I could pick out the PWP every time. An MD should be able to at least do the same.

[Gioc in reply to MBAnderson]

Hi MBA

I assure you that my dr (dr C.) after the two steps you take to get into his office has already understood what you have and at what stage you are, but he always does all the tests, and also a small video,every time.I am a fan of Dr.C. but it is so,

Gio

[bassofspades in reply to MBAnderson]

MBA, you have Parkinsons. Im sending you a bill, too. Thank you!

Reminds me of what I went through, and the cherry on top is they cant do nuthin about it. Thanks to HealthUnlocked, "I" can do something about it!

[TheGimba in reply to MBAnderson]

You must live in the US....Sadly in Canada they won't even bother with Pet scans and Dat scans...too expensive I guess for our "free" medical system. A two year wait for a neurologist to tell you that you might have Parkinson's seems like a kick in the face. The three neurologists we met didn't seem to have much of a clue. They prefer the "you must be crazy card" for younger sufferers.

[gingerj]

Hi infantry 151. I was 48 when diagnosed. I didn't believe it till a DAT scan confirmed things. It's not fun, it comes as a shock. Over the last two years my symtoms got worse. I tried to stay away from the meds with so many forums and articles warning about the dangers. However It was only by starting on Sinemet a couple of months ago that I realised how much my condition had worsened and how much better I feel now. My advice is be prepared for the diagnosis. Remember if it is PD that there are worse things it could be. Tell everyone important in your life that you have it. This makes things easier for you. Take the meds when you need to. Don't delay as long as I did. Why have a crap time of it when the meds make things more bearable. Stay away from dopamine agonists though. Exercise has to be the key to slowing progression. And improve your diet. Watch sugar. Consider supplements if you want. There is loads of advice on the web.

[Buckholt in reply to gingerj]

Good post!

[janers in reply to gingerj]

Why do you advise against dopamine agonists? My understanding is they are helpfu for people in their 40s, due to the long term side effects of l-dopa usage.

[gingerj in reply to janers]

My neurologist said as much. But reading about other people's experiences, low blood pressure, hallucinations, gambling and compulsive behaviour. I decided to steer clear unless I really have no choice.

[TheGimba in reply to janers]

Hi, My husband was on agonists for a year. He started gaming on the computer for 18 hours a day...pretty much destroyed out lives as a family. If the PD sufferer has any kind of "vice", gambling, gaming, alcohol, drugs, sex....agonists can turn an annoying habit into a catastrophe. They did give my husband a lot of energy and mental focus...(not in a good way), unfortunately. If you or your loved one do take, do so with your eyes wide open.

[Cagey84]

Hi Infantry151,

1. As others have said, exercise, exercise, exercise. It should include 30min aerobic 3x a week, movement such as yoga etc, but importantly, something you can hopefully enjoy and feel motivated to do.

2. Don't be scared of medication. It helps enormously, and the consensus these days is there is no need to delay. I'd personally avoid dopamine agonists, but your neurologist will know more than me.

3. There's a saying - you meet one person with Parkinson's, you've met one person with Parkinson's. We're all different, it's a VERY diverse condition. You can easily scare yourself by reading about what MIGHT go wrong; it doesn't mean it WILL happen. Be positive and meet up with other people with PD.

4. Be very, very wary of people who claim miracle cures and don't believe anyone who claims to reverse Parkinson's. Instead, take notice of information on the Michael J Fox Foundation, the European PD Association, Parkinson's UK etc. Don't believe anyone who says it's all a big pharma plot.

5. Don't rely on an imminent cure. There is a ton of research going on, and some interesting stuff that will hit the market in the next ten years. but you should focus on your plan.

Finally, and this may sound odd, if you had to have a long term neurodegenerative disease, this is the one to go for! Good luck!!

[october61]

Save as much money as you can.

Maintain the best possible health.

Start work on your Bucket List.

Avoid idiots.

Walk away from arguments.

Take care,

Paul