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wearwear

PD Doubts

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I’ve been lurking and learning on this forum for a little over 2 months.

 

After having had mild resting  tremors in my right foot and hand for a little over a year my wife insisted that I go see a neurologist, we had suspected that I might have PD.  I was lucky to get an appointment a few days later and after a 30 minute examination, I was diagnosed with PD, that was  on October 30th 2015. It really bothered me that I could get such a life changing diagnosis in such a short amount of time.

 

For the following month my anxiety level was very high and my tremors seemed to increase overnight, I kept thinking that it was all in my head and that I was  making the symptoms happen voluntarily, in part because I was able to stop the tremors whenever I realized they were happening.

 

I had told my neurologist that I’d like participate in any upcoming trials and she said, she would send the paper work to The Institute for Neurodegenerative Disorders at Yale University, which is only 35 miles from where I live. They called me the day before Thanks Giving and we setup an appointment for the following week. I was so relieved that I was getting a second opinion from a MDS.

 

It was so different being examined at a research facility, the neurologist spent 2+ hours with me and my wife confirming my dx and talking to us about PD. I was actually relived to get the confirmation.

 

It’s now January 1st. and I’m still having doubts while I await my DaTscan, which should happen in the next couple of weeks.

Edited by wearwear

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Welcome to the forum! 

 

It sounds to me like you have a classic case of PD.  The experts say that a person has probably had PD for 20 years before enough dopamine is depleted for symptoms to appear.  So, while you now have a name for your symptoms, it's not a life changing diagnosis. 

 

A woman I know did receive a life changing diagnosis about a month ago.  She has Stage 4 cancer.  We are very lucky to only have PD!!!  How would you like to receive her diagnosis?

 

Don't forget to get a lot of exercise.  Exercise is the ONLY thing shown to slow the progression of PD/PD symptoms!

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Wearwear, Welcome to the forum. After going through what you just went through I can empathize with you. It took me awhile to get used to having this diagnosis looming over me. Wondering what the future will be like, wishing it would still be the same as I had planned, trying to get into a trial, and just trying to act like nothing was wrong. 

 

Now a year since Diagnosis I can tell you that yes it is life altering but not life ending. The future will be the future no matter what comes. The difference is we will just have to adjust a little. Give your self time, and learn what you can so you are prepared for what PD could throw at you. I find that the more I know about what could happen just make me more prepared in the end. 

 

You will learn that things get better. Exercises will defiantly help, if you feel you need meds then take them. They help me out a lot. Best thing I did was start meds when I did. Did not realize how terrible I felt. It also gave me more energy to do my exercises. Now I feel great. 

 

Blessings and ask any questions you would like. 

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WW-  I was 55 when diagnosed (60 now).  A Dat Scan was never mentioned by my MDS.  I started on Sinemet within a year of diagnosis and felt so much better.  The only time I feel as bad as I did before medication is when I wake up in the morning.  Once the medication "kicks-in" and I get moving I can get through most days with few problems.  Reducing stress in your life and taking care of yourself with diet and exercise will help as much as medication in the early years.  Gardener

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WW, it's been 1 1/2 years since "official diagnosis" for myself. I haven't really stressed out about it, and seem to be doing okay, with just a bit of meds.

Reduce your stress, exercise, and have fun.

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Wearwear,   Welcome to the forum.  We have a fantastic group of folks on the list, and pretty open about everything related to PD.

 

One of the thoughts about PD is "well, it could be worse".    Common theme is attitude and exercise.  If you can remain active it really makes a difference with everything.  I had symptoms for a long time before being seen.  I was pretty much convinced myself it was just too much coffee/caffeine.  Well cut those out and realized something else. I did great in the morning, but started eating at my desk at work ("Sorry guys, I just have too much to get done... "). Yep, had a hard time with a fork.  Dinners with customers... look for sticky rice, cheese grits, or mash patato's.   Kept things from rolling off my fork.   So by the time I was seen by a MDS and started sinemet, it was more of a "why the heck did I wait so long to be seen".

 

DATscan's have gotten better, even in the past year have improved the testing and measurement.

 

MDS spending time with you and getting the Physical Therapy is great.   

 

Tom

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Hi Wear.... Welcome to our little corner of the net... grab a beer and have a seat, stay awhile........ make yourself comfortable...... cookies will be out of the oven shortly;........

 

Don't worry about doubting yourself.... I've had PD for many years, and had DBS surgery a little over a year ago.... When everything is working right, and I'm in the proverbial "sweet spot"? I even wonder if it is "real"................. Like Gardener, I've never had a DaT scan, I did ask my MDS about them once, and she told me (same as Dr. Okun here), that the DaT scan was:

A) not part of the Dx criteria...

B) only approved to differentiate between Parkinsonism's and Essential Tremor (something I did not have)

Oh, and it was obvious that it was Parkinson's, because my symptoms, and response to the L-Dopa was classic............ and like you, I got a second DX from one of the leading PD researchers here in the Pacific NW., Thus eliminating the need for a multi thousand dollar scan........

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I do appreciate all the comments, the last 2 months have a real wake up call. For the first time in my life I've gotten religious about working out every day, next week I'm adding a Tia Chi class to the schedule. I'd like to hold off on med's for as long as possible, PD isn't interfering with my quality of life at this point. 

 

They're giving me the DaTscan along with taking biopsies from all regions of my body and drawing some spinal fluid because I volunteered to participate in a study to help diagnose PD. It's all being funded by the Michael J Fox Foundation, I there's no way I could afford to pay for it myself. 

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HI wearwear!

 

No one likes being given the news. Personally I was glad that IT at least had a name after about 11/2 years of trying to figure out what was going on. There are good days and bad days. On the good days it truly makes you count your blessings.

 

Diet and EXERCISE are crucial…..not to mention the meds sooner or later.

 

Best of luck!

 

Peace.

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Welcome , I was DX back in June and I know exactly how you feel with the anxiety and ,the other things you talk about . For me it has become way less stressful as time has passed . Like others have said it could be worse . and I think coming here and seeing your not the only one doesn't hurt  either . At first I thought Son OF A B**** what am I going to do know . But now I am exercising and thinking about either Hiking a portion of the Appalachian Trail or Climbing a couple of the 46 Adirondack high peaks . Due to balance and dizziness issues along with ridged and cramping muscles the DR says it's time to stop working my construction job . I am also picking up a new Chocolate Lab Pup at the end of the month . I've always wanted to train my dogs to be one of those dogs you see working on TV but never had that kind of time . Usually in the past I'd start and then we would end laying on the couch on Saturday afternoons .LOL. Not the way I wanted to retire but at least i'll have some time do  some of the things I wanted . so I think in your case your anxiety will subside some as you become more familiar with how to continue on .   Dan

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I've learned so much from this forum, it's really been my most valuable resource and support group.

 

One of the questions I have is with regard to my tremors and the ability to stop them once I realize they're happening. When you have  tremors are they uncontrollable or can you stop them temporarily? Is this because I'm in the very early stages of PD?

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In the early days of PD, I could stop my tremors just by thinking about them.  Now, I can sometimes stop them for a short time by moving the affected appendage.  My overall daily tremor time is decreased by weight lifting (heavy weight, low reps) and by boxing.

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Some time ago I could control my thumb and index finger twitches by relaxation or attention. Nowadays its a lot harder. After a workout with weights or on the heavy bag, all symptoms abate a bit. The more intense the workiut was, the greater the relieve.

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Welcome WW,

 

This is a great place to learn and vent. I would recommend you read through a lot of the older threads even a few in caregivers forum there is really some good info in them.

 

Grunt

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Wearwear...

 

I know how you feel. I was in so much denial in the beginning. I had a DatScan that came back negative and was thrilled. The next day I once again took a stunt man tumble down a flight of stairs. Finally went on Sinimet and it was near miraculous. I felt so good I lnew I did not have PD. Went off medicine and realized two days later that I indeed had PD.

 

Fast forward two years and the medicine still works good. But now I know I have it. I don't want it, but it's here. Once you surrenfer to it you realize there is so many other things so much worse than PD.

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