Would earlier diagnosis have helped


#1

I have now been lurking here for almost a year reading everybody else's story. I thought it about time I jumped in.

Off sick at the moment as I had to spend some time in hospital with gall bladder infection. Hospital were great with allowing me to manage medication and recording what I took. Had one really bad night when I got totally confused and couldn't operate my mobile phone. It seemed to have a mind of its own and I was desperate to stop it calling someone.

 

Had PD symptoms for some years, left arm hanging by side occasional loss of balance when walking. I had seen doctor but worries were dismissed. About 2 years ago I fell over in working. Simply overbalanced when picking something from floor. I was very upset and as a result saw doctor and first specialist. Diagnosed as parkinsonian or benign tremor. Prescribed amantadine. About a year later I saw younger specialist. As soon as I walked into his office, no more than 3 steps, he had spotted that I had PD. He did of course carry out tests, scans etc. to confim. Started on Ropinorole .25mg scaling up to 14mg a day over about 2 months. The current drugs I take seem to keep things mostly under control.


#2

hi soldierboys .I have pd for 8 yrs had dbs two years ago sorted now ,just balance & walking just wondering did the amantadine work for your walking & balance .gus


#3

Welcome to the forum, soldierboy!  It's funny how most of us "eavesdrop" for a while before actually joining in and posting.  But it's an excellent forum that offers a lot of information and support.

I've had PD over 16 years now and am lucky in that it has progressed very little in all that time.  I started on Amantadine around 2003, because my doctor said it might slow the disease's progress.  Since I had no side effects, I kept taking it.  But I have no idea whether it is really effective or my case is just a slow one.

Best of luck to you!     J


#4

J,

Have you had any side effects from the amantadine at all- any anxiety/psychological impact?

Also, how did your PD present itself? And what are your residual symptoms?

 

Thanks!

Paul


#5

HI SOLDIERBOY....WELCOME....IWAS LIKE YOU AND HELD BACK FOR A WHILE BUT SO GLAD I JOINED THE FORUM, EVERYONE HAS BEEN SO WELCOMING AND FRIENDLY AND IT IS GOOD TO GET THE SUPPORT AND OTHER PEOPLES EXPERIENCES WITH PD. I WAS DIAGNOSED IN FEB 2013 THOUGH I HAD FELT POORLY FOR A LONG TIME AND IT SEEMS HAVE PROBABLY HAD IT FOR APPROX 5 YEARS. i WAS TESTED FOR SO MANY THINGS AND DID PRESENT AN ARM THAT DID NOT SWING! LOSS OF SENSE OF SMELL! WALKING WITH A LEAN FORWARD AND SHUFFLING! TREMORS! NECK RIGITITY AND PAIN! A RIGHT THUMB THAT TOOK ON A LIFE OF ITS OWN!! QUIETER VOICE...THOUGH THAT WAS NOT A PROBLEM TO MY DEAR HUSBAND!!!! ONCE I WAS DIAGNOSED I WAS PUT ON REQUIPXL UP TO 14MGS, THAT WAS NOT CONTROLLING THE SYMPTOMS FULLY AND NOW I HAVE CO-BENELDOPA 12.5/50 THREE TIMES A DAY AND 10MGS OF REQUIPXL AT NIGHT. THE STIFFNESS STARTED TO EASE AND PAIN AND I AM WALKING BETTER. i STILL FEEL THE TREMORS AND WORSE IF ANXIOUS OR HUNGRY. I HAVE NOT TRIED AMANTIDINE BUT I WILL MENTION IT TO MY NURSE. BEST WISHES TO YOU...AND DON'T FORGET WE ARE ALL HERE FOR A CHAT....KEEP SMILINGbig grin


#6

Hello again -- In response to your questions, Paul, no, I have had no side effects whatsoever from Amantadine.  I understand some pwp have strong reactions, but to me it is like a placebo:  no discernible effects positive or negative.  Now, with Mirapex, I at first had the increased libido you have probably read about; then, without lowering my dosage, I returned to normal.  And with Azilect (rasagiline) I suffered mild dizziness and had to reduce my dosage.

First presentation of PD?  In retrospect, I can see that my first symptoms included stiffness in my right shoulder and in my gait.  Then I noticed a lack of coordination between left and right hands, trouble using a knife, shrinking handwriting, an occasional tremor in the right hand, and an inability to use my legs to swim.  As soon as I started on Mirapex (within days), all of these symptoms disappeared.  Over the years, however, some have returned in spite of medications.  I still have difficulty with knives, have to concentrate to keep my penmanship even and large enough, and have a tremor whenever I am cold or nervous.

On the plus side, I have good enough balance to be advancing through classes in Tai Chi.  I play classical piano, practicing nearly every day.  I work out at a gym and hike three mornings a week.  I have not yet experienced many of the PD symptoms I read about on this forum and encounter when I meet other patients.  My life is virtually the same as it always was -- except that I take approximately 18 pills a day!  And I used to be one of those people who hesitated to take even an aspirin.

As everyone says, PD is different in each case, but I hope this information will be helpful.       J


#7

Hi to those newly diagnosed

Please could I urge you to get a speech therapy assessment earlier, rather than later?

You may currently only have minor speech/voice issues, but therapy is much more effective in maintaining a level, than trying to get back what has been lost and there are good, well researched techniques to maintain voice and speech for PWP.

Speech therapists are also the specialists in swallowing problems.

They work both in the NHS and privately.

To search for a private speech therapist you can go to:

helpwithtalking.com or visit my website as detailed on my profile.