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Re: newly diagnosed husbandf

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Parkinson's Disease
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Posted 8/6/2006 12:31 AM (GMT 0)
I have started this post 4 times and there is this little button on my mouse that my PD fingeers keep hitting and it deleates everything I write.  I am gonna give this one more shot .  I am 54 years old and have had PD swsince I was 42. Frankly I did not believe the diagnosis.  I went to Indiana University and Mayo Clinic and countless neurologists and not one of them said I didn't have it however not one of then said I did. So I took meds when I thought I needed them and didn't really concern myself with it  Even when I went on disability I felt denial. Then last sept my husband was diagnosesd with cancer of the bladdewer annd had to go to U of ILL in chicago to have it removed .  They told us then thaat the cance r was found in the lymph nodes and he would have to undergo agressive chemo.  Well that's all the parkinson's disease had to hear and it took off. I began to stiffen up and have violent uncontrollable movements.  I had to quit driving that quickly and haqd to continue to worry ablout mmy husband.  I thought he was going die and who was going to take care of me?  He was supposed to take care of me and now he might die!  Well he di9d go thru hell but he has been declared cancer free.  We live in a rural community that is 16 miileas from our Drs. and the hospital.  So we are moving in three weeks into the city to be closer to facilities.  I am not going to lie to you, it is no rose garden.  Your husband is right ..it is not a death sentence but currently it is a life sentence. Eventually the one medicine that helps PD (sinemet) loses it's effectiveness and there is no other medicine that equals it. So you either have to tak more of it less often or less more often.  There is a surgery but it is not a cure but only a temporary fix.  Every patient is different they pprogress differently they rtespond to medicines differenty.  He's gonna get ,moody and he is gonna tall about it a lot.  You are gonna get sick of hearing it.  Be supportive and try to get the best help u can.  outta room gotta go. God Bless

Dyanamo

excuse my typos but its PD fingers.Go to www.parklinson.org go to discussionn corner and sighn up for "ask the doctor"  U can ask a pd specialist any question u may have and he will answer youl

 

Posted 8/6/2006 1:49 AM (GMT 0)
Dynamo I am sorry you have all these challenges in your life.  I commend you for finishing your post.  Please research the MouseCage which is  Computer Softwear for Tremor users.  I also visited a computer store for weeks and asked other customers about devices for the physically chal. My husb. can use the Logitech remote mouse.  Good luck with your move.  
Posted 8/6/2006 2:37 AM (GMT 0)
Dynamo,Welcome to Healing well,and I wish the best for both you,and your husband.God Bless you and I'll send a prayer and thoughts your way.Ed
Posted 8/6/2006 1:33 PM (GMT 0)
Thank you I will look into the software too. Glad to be here All prayers accepted and will also pray for all. Sorry I was a bit down when I posted. I am not always that bad.
Posted 8/6/2006 2:25 PM (GMT 0)
Dyanamo, feeling "down", and "low down" goes with the territory. Don't worry about it. We are here to encourage and help you through your journey. If this day is your Sabbath, I hope it is a restful one.
Posted 8/7/2006 12:07 AM (GMT 0)
I am moving to a city with several small lakes good for boating and fishing . I wouild like to go fishing again I live 1/2 mile from Lake Michigan but don't care to fish there. I really enjoy watching that lake tho.
especially when the waves are big and there are white caps. It looks just like the ocean . ON a clear day you can see Chicago scyscrapers on the horizo And berlieve it or not I have never seen the sunset on Lake Michigan. Now that is sad. I used to love to fish so maybe I'll get a new pole and go fishin' for some pan fish mmmmm good!
Posted 8/8/2006 7:05 PM (GMT 0)
Dynamo:

I am 44, well 45 on 8/10, but I'll claim 44 for as long as I can. Sorry to hear aobut your situation. I do know that stress and sudden trauma will increase PD symptoms. You are dealing with both. For me my diagnoisis was confirmed in January of this year. I was glad to hear about the typing device posted by "Eureka". I have been worried about my job and my typing speed taking a nose dive. When meds are working I type +65wpm, when meds don't work it is -32wpm. That hurts when your job is 90% computer usage. It is really interesting to me to note so many of us suffering with PD on this forum are from the IL, IN area.

Take care all and keep looking up to the source of all strength!

JB
Posted 8/10/2006 2:21 PM (GMT 0)
HI THERE DYNAMO

HANG TUFF. I LIVE BY THE SAYING (WINNERS NEVER QUIT AND QUITTERS NEVER WIN).I'VE HAD PD FOR 6 YEARS AND ITS A BIT EASYER NOW. I STILL HAVE BAD DAYS BUT OVER THE LAST 5 YEARS OR SO I HAVE FOUND THAT I CAN STILL DO ALMOST EVERYTHING THAT I USED TO DO. SOMETIMES IT JUST TAKES ME A LITTLE LONGER. IT'S BEEN A LONG STRUGGLE WITH ALL THE MEDS. CURRENTLY I TAKE 7 25/100 A DAY, 3 .5MG MIRAPIX, AND 3 ARTANE A DAY. PLUS 10 OTHER PILLS DAILY FOR DEPRESSION, HIGH BLOOD PRESSURE, ACID REFLIX, SLEEPING PILLS, THAT OTHER BLUE PILL, AND OTHERS. THERE WILL BE ALOT OF LITTLE THINGS THAT YOUR HUSBAND WILL NOTICE AS THE YEARS GO ON. LIKE CONFUSION, SLEEPING PROBLEMS, HARD TIME GOING TO THE BATHROOM, STRESSING OUT about ANY LITTLE THING, WORRYING TO MUCH, SMELL, TASTE, VERY MODDY, LOSS OF STRENTH, AND ON AND ON. I STILL GET UP AT 4AM AND DRIVE 1 HOURS TO WORK EACH DAY, WORK FOR 10-11 HOURS AND DRIVE HOME DURING RUSH HOUR. I COACH MY SONS BASEBALL AND FOOTBALL TEAMS, AND GO HUNTING AND FISHING AS MUCH AS POSSIBLE. SOMETIMES IT REALLY SUCKS AND I FEEL LIKE I CAN'T DO IT ANYMORE. BUT I KEEP GOING ON BECAUSE OF MY KIDS AND WIFE. AND THE 2 CANS OF SKOAL MINT THAT I GO THRU DAILY. I'VE TOLD MY DOCTORS THAT THE SKOAL WORKS BETTER THAN MY MEDS. BUT THEY THINK I'M NUTS. YOU GUYS TAKE IT ONE DAY AT A TIME AND MAY GOD BLESS YOU. IT WILL ALL WORK OUT IT JUST TAKE TIME. TAKE CARE  SCOTT 

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