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Just Found Out Hubby Has PD

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Parkinson's Disease
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Posted 3/7/2006 7:53 PM (GMT 0)
I really need a support group to get through all of this and thought this is a good place to start.  This has been the worst 12 months of my families life.  Back Feb 2005, my husband Tom at age 49 was diagnosed with Prostate Cancer and we caught it in time and he had his prostate removed.  Shortly thereafter, it was noticed by friends and relatives and mentioned to me that Tom didn't seem himself.  They pointed out that he was walking slower, hunched over and his face hung lower on one side.  He was sometimes slurring.  They asked if he had had a stroke.  I disregarded the comments stating that he's gained 25 pounds, has back problems, etc.  And I truly believed that myself.  On Xmas day both my mom in law and I noticed Tom's lip tremoring.  When I asked Tom about it, he said that his left hand did the same on occasion too.  I had him make a neurologist appt. and they recommended he take a blood test and MRI to rule out a brain tumor, probs with his thyroid, etc. and the test results showed that he was okay.  When he went back to the neurologist, he recv'd a pamphlet on Parkinson's and told him he had the disease and to see him in 6 months!  We are now looking for a specialist at Northwestern Hosp in Chicago, which is where Tom had his prostate surgery.  We wonder if there is any correlation between prostate cancer and his Parkinson's since PD happened directly after the surgery.  I am beside myself...everything I read is gloom and doom.  I am trying to be strong for him and my son, but it's been difficult (I recently got laid off from my job, my childhood girlfriend recently died from colon cancer at 47 yrs old, my aunt died in a freak accident and I had acute iritis, which is an inflamation of the eyes and lost partial eyesite for 6 weeks....thank god w/steroids and medication I have fully gotten it back).  I can't believe what bad luck we have had...and am trying to understand it all.  When I hear of prostate cancer and PD, I think of the elderly....65-70 yrs old...not 50.   I have spoken to my pastor and found him comforting especially when he mentioned his dad had PD and lived until 80 without a wheel chair and fully functioning.  I find that Tom has been handling this alot better than I have....I've been a basket case and when I fall apart with tears I blame the lost of my job...but that is the farthest thing from my mind.  When he talks about PD, he says that it's not a death sentence, it is just that it will affect his quality of life.  I find comfort in knowing that outwardly he is talking to me about it and his feelings, unlike the way he handled his cancer--where he kept everything inside.  I also find strength in knowing that scientists are making great strides in combating PD and have come a long way with medication and research.  And having Michael J. Fox as a spokesman helps a great deal with public awareness for funding, etc.  Hopefully someday soon there will be a cure or meds to stablize this disease...Please shed some light on this for me and what has worked for you to not only get through this yourself and move forward with your life and those around you...but also be strong for the person afflicted with it. 
Posted 3/7/2006 10:10 PM (GMT 0)
laura,

Sorry to hear of your families problems it sure isn't easy.I'd like to welcome you to Healing well.our members have plenty of experience with PD and you should be hearing from them.My experience that I remember was classical first denial ,then anger, then finally acceptance.I don't think my wife has yet reached acceptance,and this has been a long journey for her.
there are very effective medications for PD,and Tom is right it isn't the end of the world.I was DX with PD at 53 although some symptoms statred earlier.I currently work.but plan on retiring this spring.I try and stay active and get exercise which I believe slows progression.You can Google many pd organizations and gather as much info as you can.Know thy enemy I guess.Wellmy thoughts go your way;stay in touch and get Tom active in a support group.Ed
Posted 3/7/2006 10:38 PM (GMT 0)

Laura, agree that the diagnosis of PD is scary, but all is definitely not lost! Medications, exercises, development of routines all help in dealing with it. I was diagnosed 15 months ago. Medication and exercise are so helpful that I sometimes forget that I have PD! Neurologist says that progress can now be slowed to the point that people more often die from other ailments than from PD!! arbet

Posted 3/8/2006 7:38 AM (GMT 0)
Laura,

Welcome! Your husband is lucky to have such a devoted spouse.

 

Life does not end with a Parkinson's diagnosis ... it just takes a bit of a hiccup. I was diagnosed in 2001, still work full-time and am fortunate to be on a low dosage of pd meds.

 

You mention that you are looking for support (here, here) and live in NW Chicago. Did you know there is a major pd support group in the Chicago area? It's the Midwest Chapter of the American Parkinson's Disease Association (APDA). Their annual symposium is this Saturday, March 11, 2006 from 8:30 am - 2:30 pm in Schaumburg, IL The phone number for the APDA Midwest Chapter office is (847) 724-7087. I went to last year's symposium. It's a great way to learn more about PD and to network with others. If you can't make it to the Symposium, I know others in the Chicago area with pd support groups. I'll watch for your reply.

 

I'm in Indianapolis and am involved with a young-onset and also a 'traditional' support group there. Our annual pd symposium will be Oct 28, 2006. Maybe you can make it to Indy.

 

[email protected]

Posted 3/8/2006 12:16 PM (GMT 0)
Arbet,

Welcome to healing well, i hope you find this forum to be helpfull,and supportive.Stay well.Ed
Posted 3/9/2006 6:14 PM (GMT 0)
Laura, it seems that when it rains; it pours ! When the storm is raging, you may think you were the only one caught outside getting soaked, but there are others floating around out in the flood waters. If you can remain afloat long enough someone will come by in a life boat ( or maybe just an ugly little leaky canoe.). Grab on, and crawl in, and help us paddle. Paddle like crazy. If the boat picks up enough of us, maybe.....just maybe..........we will make it to dry land.
Posted 3/9/2006 7:35 PM (GMT 0)
Selma,

Well put and welcome to Healing well.Ed
Posted 3/11/2006 12:44 AM (GMT 0)
Dear New Friends @ Healing Well.com....

 

Thank you so much for responding to my 'novel'....I felt ALOT better knowing that I am not alone and that I can confide in those who understand what I am going through.  I know now that, with your help...that I'll be strong for my husband, family and myself....thanks for being here for me. 

Laura W

Posted 3/11/2006 7:55 AM (GMT 0)
Laura W,

You make me smile. Thanks!

 

You definitely are not alone. We are here for you!

 

lizzy4451

Posted 4/19/2006 3:56 PM (GMT 0)
Laura,
My husband was diagnosed a week ago Monday.. I am scared too.... Mine is a Tom also... Perhaps we can weather the storm together... One interesting connection with the prostate cancer, my husband has not had it, but his Grandfather and father did.. Maybe there is some sort or connection.
Posted 4/21/2006 2:16 AM (GMT 0)
Hi Tami M,
I would like to weather this huge storm with you....having Tom's in common and unfortunately PD in common too. We'll get through this together!! Please email me offline if you wish @ [email protected] and we can discuss prostate cancer and the whether or not there is connection with PD. Looking forward to hearing from you!
Laura
Posted 4/23/2006 1:09 PM (GMT 0)

Laura W

Glad the messages of support have helped you.  I've had PD for over 6 years and like your husband also had prostate cancer. My wife does'nt put my PD down to that but to the shock of having a double total knee replacement 9 years ago. There is no clinical evidence, as far as I know, to say that shock can cause PD and I truly believe that is down to luck or lack of it. 10 months ago I had cancer of the kidney and this was removed. This year I have been diagnosed with kidney failure and that means dialysis sometime soon but, in my own mind I think I've been lucky in a way because, despite all this,  I'm still here to enjoy my little grandson of 4. 

I'm from England so dont know what its like over in the states in regard to local support groups but they are a nice lot of people on this board and its from others you can gain strength. I certainly do

Good luck and God Bless

BILLY 

Posted 5/24/2006 12:59 PM (GMT 0)
Hi all,
I'm a lurker on this forum because my mother-in-law had PD and a host of other problems before she passed away. I want to stay current on this disease in case it shows up in other family members. I am very pleased to see so much progress in PD treatment. Mom was in an experimental group for many of the new meds you are now taking although she received them too late in her illness to help as much as you are helped.

I commend you all for your fighting spirit. Your attitude is half the battle with this disease. One thing I found was that if you tell your support persons exactly what is going on with your head it helps a lot. Mom lived with us and in the beginning it was difficult because she tried to hide her fears and 'down' feelings. Once we started talking it was a lot easier to be supportive and to relieve her anxieties that seem to just pop up from this disorder. Keep talking to your loved ones. It makes it easier for them to help you and sometimes it helps them explain away some of the irrational fears that come out of nowhere. We eventually got to the point where we would laugh and put labels on the odd feelings she got, gently pointing out that they were 'cloud stuff' and not real. She became very accepting of the idea that some of her fears were from the meds or the disease itself and that she could trust us to point out the 'odd' ones that would never happen.

Just wanted to say hello and give you all a 'Well Done!' Keep talking. Keep sharing. It helps.
Posted 5/25/2006 3:06 AM (GMT 0)
I am the daughter of a mother with parkinson's disease and my advice to you is to read, read, read and learn all you can and be your own advocate.  Sometimes I learn more from the internet than the neurologist.  I saw a study recently that said that exercise can delay or even prevent Parkinson's.  Good luck.

Posted 8/5/2006 4:55 AM (GMT 0)
My Dad was diagnosed on August 2nd with PD. He has had tremors in his legs now for about three years. He lost his sense of smell about nine years ago that we have recently learned is one of the symptoms of PD. But a interesting thought..Dad also had Prostate Cancer. The doctor found in during a Prostate surgery back in 02/04. They removed 70% of his prostate. The amount of cancer was little so we guessed it was in the early stages. Dad had recently been back to the urologist and his PSA's are still very low. So we know he does not have prostate cancer anymore. The doctor that told Daddy you have PD was so gentle with Dad. I couldnt have asked for better. He told Dad, "I would rather be diagnosed with PD than be told, I understand you have this shaking going on but I dont know what it is and have all kind of tests done". I took comfort in that. He was right, Dad wasnt diagnosed of brain cancer. But still I'm very scared too. As this is new to us and we just dont know. And I've read so much that I think at times I dont know how this can be okay. So you are not alone.
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