Just diagnosed

I am 37 when I was diagnosed with PD. But PD did not hampers my dreams. I keep on working up to now. I turned 54 last month. The only things I have are courage and deteremination to succeed and reach my goal, to give bright future for my children. For long years I have maintained my mobility and independence. Don't be afraid of the disease. You must learn to accept and live with it. Stay active physically and mentally. Continue your goal in life. Make plans for your dream. Don't let PD puts you down. It's you who should handle the disease, be strong and have the courage to fight and I'm sure you will win.

Just Diagnosed,

 

I think maybe I can give you some reason to be encouraged.  I was diagnosed in 1991 with PD.  I was 44 at the time (early onset).  My neurologist back then could not give me any idea how long it would be until I became completely disfunctional.  He said that it could be five years or maybe as many as 10.  Well, here it is 16 years later and I'm still doing well.  My medication controls the PD so that my life is tolerable.  No, it's better than tolerable.  It's good.

 

During those 16 years I tried everything from acupuncture to tuina massage (an energy field treatment taken from Asian medicine studies) to the latest conventional medical treatment.  Recently, I even tried taking tango lessons after hearing that a study on exercize and PD found that exerize by dancing seemed to improve the patients balance and that tango seemed to help the most.  Tai-chi also seemed to help with balance.

 

Well, I turned 60 this year and I can tell you with some authority that as strange as it sounds, exercize and proper diet have proven to do the most good.  Whether you take tango lessons or do what I do (walk about a mile each day) and eat a diet of about 7 parts carbohydrate to every 1 part protein, you can last a long time before you worsen.  There are of course many many tricks that you will pick up along your journey to minimize the symptons of PD and sometimes even worse, the side effects of your medication.  But, we'll save some of that for later after you've gotten over your initial shock.

 

Good luck and write me again if I can help.

 

Ron

The best advice that I can offer is to be very careful with the new medications that your neurologist will be trying.  Some of them can make you unbelieveably sleepy.  I was lucky that I never had an accident.  Some of the medications, like Requip, cannot be started and stopped suddenly.  I was in the ER two days after being told to stop taking Requip.  I am now taking sinemet and taking it on a schedule that I developed after trial and error.  I rarely have a tremor now.  As you read more about PD you will learn that other symptoms were probably occurring in the past and you had no idea that they could be a symptom of PD.  This forum will be a great source of information for you.  Good luck.

Tiffany,

I'll let you know if I hear of any support groups around Ocala. I started a young onset support group, but am not in FL.

 

You may need to give the Mirapex awhile to kick in. Are you still ramping up on the dosage? Mirapex and Requip are both dopamine agonists. I started on Requip and am still on it after 6.5 years. It took me about 6 weeks to ramp up to the desired dosage, which was quite low. So ... give it some time.

 

The other issue is that the dosage you are currently on, or working up to, may not be right for you. That's something you can work through with your neuro/doc. Mirapex may not even be the most effective med for you. Everyone is different in their responses to pd meds and it may take a bit to determine what works best for you. Don't give up, you're not alone.

 

lizzy4451

 

 

Tiffany,

Here's a way that you might be able to find a support group. Forgive me if my instructions are elementary, but I don't know how internet-savvy you are. We're gonna use google to locate FL support groups.

 

1) Go to www.google.com

2) In the middle of the page is a text box and to the right in small print is 'Advanced Search' <-- click on that.

3) In the text box that says 'with the exact phrase',  type in 'Parkinson's' support' (do not include the quotation marks.

4) In the text box that says 'with all the words', type in 'Florida' (do not include the quotation marks).

5) Click on the button that says 'Google Search'.

 

Waaalaaaaa ..... some listings of FL support groups. Hopefully you'll find something close.

 

Best of luck,

lizzy4451

Amen, to everything St. Louis ron has said. I thought my world had come to an end when i was first diagnosed 2 plus yrs. ago, but it had not just got delayed for a while. I TRY to practice all Ron has said plus I feel keep yourself informed. There are wonderful places to go to read about our disease, knowledge is power, read good material that you know is a good source.
I wish the best for you all, this is a good site for a support group.
Flower Lady

momyoftwo,Welcome to Healing Well.As youhave read from others posts,staying active,and positive will help you get thru this ,and with age on your side Im sure you will see a cure soon.Stay well.Ed