For those who care for someone with Parkinson's disease
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By Daybyday On 2014.04.24 14:41
I have been reading all the posts for a while now and wondering how I would jump in.

Some of our issues sound minor compared to what I have been reading about on here. First of all, hello to all of you very brave souls out there. And I mean BRAVE.
My PWP is my husband, Chris, who we think has had this disease for roughly 2 years. Have to guess because as you know the symptoms come on so gradually it is hard to pinpoint the exact start. He has also had prostate cancer since 2002 so it was his prostate doctor who said he should see a neurologist right away when we shared the symptoms with him. Chris has a pretty strong tremor in his right hand and almost no ability to use this hand at all. It is starting to atrophy due to non use. When I try to get him to exercise the hand he gets mad at me. The non use of this hand makes so many daily activities extremely difficult for him. He gets frustrated constantly.

So in August of 2012 he was officially diagnosed with Parkinson's. We have never been crazy about the doctor we started with so we are trying to find someone new to go to right now. We live in Northwest Indiana if anyone knows of a great doctor nearby. Driving in to Chicago is proving more and more difficult for us since Chris gets a great deal of anxiety surrounding appointments so we prefer to see someone in Indiana. Saturday we are attending our first Parkinson's Symposium in Merrillville and some of our Support Grp friends will be there. We hope to hear of a new doctor there.

Anyway, I hope to contribute to the conversations in going forward and I really have been appreciating all of your input so much. Thank you. Chris is 62 and I am 56. He got prostate cancer earlier than "normal" (age 50) and now he seems to have also gotten Parkinson's a little earlier than is "normal". I know that there is no normal but you get what I mean. He has had his share of health issues in his time. We are coping well @ the moment .....that can change @ anytime we are learning.

This last holiday, Easter, was hard; he generally does poorly around holidays. We usually see relatives @ holidays but not lately because he has ongoing family issues that really are upsetting him and really making him very very depressed. This last holiday he did not see his mother (age 92) for the first time on a holiday and he started suffering many many more symptoms than normal. It's amazing how deeply this disease is tied in to the emotions of the patient. He started experiencing a very stiff/frozen jaw (in addition to his normal symptoms) for 2 days before the holiday and it didn't go away until 2 days after the holiday...very odd. He could hardly speak at all. He was generally very very fatigued too. Was going to bed about 8:00pm for several days....couldn't stay awake. He had taken naps during the day too. He doesn't have as much communication with certain family members as he used to and he is sad about that too. He has trouble speaking on the phone so that's probably why they don't call him as much. He knows they are busy with their own lives too. He doesn't want anyone to feel they HAVE TO call him. Very sad to witness and breaks my heart.

I've gone on too long but I wanted to introduce myself and give you a feel for our situation. I am trying to learn about each of your situations. Everyone is at a different point with this disease and everyone is having many different experiences so it's a little bit of a challenge keeping it straight. The positive attitudes are wonderful. Helps so much.

We are just taking it day by day.


By LOHENGR1N On 2014.04.24 15:03
Hi Joanne, Welcome to the forum. There are a great group of People here who are willing to help in any way they can. I'm Al but you probably know this by reading posts on here. Glad you decided to jump into the posting.

If I can, You mention your Husband's right hand starting to atrophy? Is it curling in, does his arm kind of raise up (from elbow to hand) and draw toward his body or protrude out toward the front? If this is happening it just might not be from non=usage but it is a cardinal sign/symptom of Parkinson's Disease.

Again welcome to the forum U'm sure many more will be welcoming you also. Take care, best of luck and hang in there

By VioletV On 2014.04.24 17:13
Welcome Joanne,
It's a club that no one volunteers to join, but that being said, I think we do pretty well by each other. There's a lot of experience, knowledge and many resources are shared here as well.

Please come in, read what's here, ask us questions, tell us what is on your mind, and just vent--I know for myself having a place where people just "get" what this is makes a world of difference.


By jcoff012 On 2014.04.24 18:21
Welcome, Joanne. As Violet says, we didn't ask to join this, but we are all here. How astute of you to realize how different PD is for everyone.

My husband, Carl, has PD. He is 66 and my sweetheart since I was 17; we married at 18 and have had four children. I have survived uterine cancer and the five years fact, I am in year eight after dx! Our son is 44 and has testicular cancer and a football sized tumor in his about courage...he has a beautiful little girl who is now nine, but only weighed 2.1 pounds at birth. We lost our oldest daughter at 15; she was hit by a car in front of her high school on the second day of her sophomore year *just got her braces off the day before...I tell you this to show you that although PD is in our lives, we have learned to keep fighting at all costs...In the last five years we have lost his Dad to cancer, his Mom to PD, and his brother to brain cancer...there is more, but it is our life and we move on...

I am never going to underestimate or trivialize any part of anyone's PD journey...we watched his mom live with it for over 22 years...she set the bar high for my husband...she did it with dignity and grace...and so does he.

Can he be a pain??...of course...he's a man! lol Now, before Al and Steve jump on me...I mean that in the best way...*I* am a pain in the butt, too! *I* am a woman, so, I, too, have lots of faults...I am an equal opportunity

That said, I do hope you feel comfortable coming here...We often agree...we disagree...but through it all, we fully understand that we NEED to say how we feel and we NEED to come here in times of joy and times of stress...and, although we wish we didn't HAVE to, we welcome you and wish you well.

Hugs, and love, Jane (Laugh as much and as often as you can...scream if you must...just know everyone cares...You are NOT alone.)

By carman96 On 2014.04.24 21:16
Welcome to the forum. We all wish we didn't have to be here but we are so we try to be as supportive as possible.
I'm wondering if your husband is willing to see a hand therapist? I don't live in your area but your primary care physician can refer you to one.
My husband doesn't have that problem with his hand but has benefited from physical therapy.
Research on the internet and find a good neurologist that you like and that will listen to you. That's what I did and I found a good one at a university hospital.
Please post with any questions, etc. I have learned so much from the people here.

By McCall On 2014.04.25 10:17
Welcome to the group, you mentioned looking for a doctor, Look for a MDS a movement disorder specialist. They know the most about PD and other such illnesses.

By cmonge On 2014.04.25 10:34
Welcome. My husband was only 50 when he was diagnosed. I suspect he has had it a lot longer. He is also progressing rapidly. Welcome to the forum. This is a terrible disease and I think many avoid the tough issues that need to be addressed in other places.

By JulieB On 2014.04.25 22:56
Nice to meet you, Joanne. I enjoyed reading your introduction. You and Chris have been through so much. It will be nice to see you here, and I know you will find the warm welcome and wise and helpful suggestions that I have found. Also, it really does make a difference to know we're not alone. xoxo Julie

By Daybyday On 2014.04.25 23:44
Thanks so much for your warm welcome. I will pursue looking for a movement disorder specialist. This community is a wonderful place to share the ups and downs of the road I find myself on. The way you understand is like no other and friends seem to care when they first hear of the diagnosis but then they seem to shy away. Some seem to not even want to hear about what is going on in your life anymore, it must scare them. But again, that leaves you alone and being able to turn to all of you is a lifesaver. We are going to the Parkinson's symposium tomorrow. I know it will totally exhaust Chris but I am glad he wants to go. Again, thank you for the welcome. We are all in this together.

By Sheridan On 2014.04.27 11:00
Dear Daybyday,
So sorry that you had to but glad that you found this site. Finding this forum has helped me handle our PD situation when I felt so alone. My husband was diagnosed in 1999 at age 43 which was 2 days after I completed treatment for breast cancer. Now at age 60 he has just been diagnosed with prostate cancer. They also just found severe spinal stenosis. I wonder why he has so many of these diseases at such a young age too. Over the years many friendships have slipped away but we are very grateful for the good friends that have stayed by our side through our many trials. This disease is cruel and unrelenting but I hope you can get some guidance and answers here. I KNOW you will find support.

By Dixie74 On 2014.04.27 11:17
I agree with everyone. I am new to this site and find that I read it every morning and evening. We just all seem to be connected and have understanding that our fiends and family would not understand. It is just so good to be able to share the good, bad and ugly and fell we have support each step of the way. I will never forget when my husband was first diagnosed, family and so called friends said....oh they have made advancements with PD.....their are new meds, just take the meds and he will be fine. Thanks to everyone that have helped me each day with their supportive comments.

By carman96 On 2014.04.27 13:31
Joanne, let us know how the symposium goes.
You are right about friends not understanding. I have learned more here about Parkinson's and caregiving here than any book, article, doctor, etc. It really helps to have people who are starting, going, or have been through, this long journey. No one else really understands.

By parkinit On 2014.04.27 23:33
Welcome, Joanne. This group of wonderful, loving people will help you thru your journey. They are kind, honest, and you will receive so much from them as those who have gone before you (or are even traveling at your same pace with their PWP) help make your journey a bit smoother.

By daisy On 2014.04.28 09:00
Welcome DaybyDay. I love your username. It describes each and everyone here.

Sorry that you have the need to be here, but you have found the MOST informative people ever...Over the years I have gleaned so much support from just reading the posts from others here. We are all at different points along the journey so there is always someone you can relate to.

In our case, DH was dx at 47, 8 yrs ago, has progressed rapidly, is on the 24hr Duodopa pump and now showing significant cognitive problems. He too, has also just been Dx with PCa. I had to give up work to care for him and we have young family. Financially, we have lost everything. Every day is a struggle and who knows what the future will bring. Hah! Not sure I'm in any hurry to find out either!

But take a deep breath and carry on with a smile. Make the most to the good days and try not to let the bad days get you down too much. Everyone here understands what you are going through, your worries and your concerns. Scream if you need to! It definitely helps! Hugs..

By umajane On 2014.04.28 20:48
Welcome Day by Day.....
There is so much to learn here...just keep checking in. We all have to live day by day and enjoy what we still have together.

By Daybyday On 2014.04.28 21:12
Just wanted to update everyone about the Parkinson's Symposium we attended last Sat. It was $35 per couple and about 300 were there. They had a continental breakfast and a lunch while many different speakers went thru their topics. We heard about the drugs used to treat the disease, about DBS, heard from a chiropractor, heard about PT, OT, a priest spoke about emotions/spirituality, and a woman with Parkinson's spoke about the support groups that she runs. A speech therapist spoke but she didn't address swallowing issues like I had hoped she would. It lasted 8-2:30 and by the time it got to be 2pm there were a lot of very tired attendees. On the whole it was good and we got to see 2 couples who are in our regular support group so that was good. Social interaction is always a good thing. One very good thing is we heard from someone some very good things about the doctor we are going to go see soon so now DH feels hopeful about that. I so hope he turns out to be a good doctor.
Thanks again for all your replies to me everyone. Makes me feel a little better already and that someone cares. And, Daisy so sorry to hear about your DH's dx of PCa, I know how overwhelming that is by itself. You are coping with a lot ....know that I am praying for you and also praying for many of you out there. May we all receive, somehow, what we need each day to get through what we need to do. Be strong.

By Trusting On 2014.04.28 21:31
Welcome to the forum! I feel that I've learned so much here and know you will too. Sometimes it is just a good place to vent! Blessings to you and your partner with PD.

By lilflower On 2014.05.01 11:40
Welcome Day by day. That's how my husband and I take things. My husband Roy (Shakie) that's what his friends call him. I'm Judy. Roy is 63 and has had PD for 25 or so years I just hit 60. The folks here are all wonderful and it really has been a Godsend to me just to know we are not alone with this battle. Again welcome

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