October 5th, 2011 - THAT day.

[OCT511]

What a great community! I'm excited to share this with my dad who has PD.

If there are any other caregivers out there, please send me a message (I swear, I won't bite!).

My dad was diagnosed the day Steve Jobs died. I feel odd linking the two; however, it makes it a lot easier to remember dad's dx date. The day seemed iconic in a way; I had the opportunity to go to Oracle on Treasure Island and watch Sting perform, yet I don't remember much of the performance. Instead, I remember the president of Oracle asking that all the guests take a moment, a moment to remember - and then as effective as a mute button, there was an absolute silence as thousands of Oracle guests bowed their heads in remembrance of Steve Jobs. I bowed my head and instead of remembering Steve Jobs, I just stood and remembered all the years prior to dad's symptoms and dad's diagnosis. Flooding in were the emotions of the past, the present, and of course, the future. What will happen? Will he be okay? Will I be able to take care of him if things get worse? In some ways though the diagnosis wasn't as horrible as I thought, it was almost comforting to know that a solution had been started and hopefully this solution would improve his quality of life.

We're 3 months in and it's been a little rocky with medication changes, but overall, the outcome has been positive. It's nice to seem him moving around fairly normal again, speaking faster AND louder, and being able to have more facial movements.

I hope the future of PD research continues to broaden the horizon of kicking this disease in the "butt".

[soup]

Hi, I'm a caregiver. Is that the word?

I wish there was a phrase that describes my role exactly. According to my husband one minute I'm good at reminding him... the next I'm nagging! Being a maturing feminist I have always rebelled against the term wife. Historically it sounds too much like being a possession. 'Care partner' sounds like a business arrangement, 'carer' sounds like I'm riding 'shotgun' on a derranged person, 'caring family member' is too much of a mouthful.

Can I trust you all to understand when I say that I am a 'caregiver' and leave you to understand the frustration, pleasure and fear that comes with that but also that this does not describe me fully, just one of the things I do?

Welcome to the world of Parkinson's and this community.

[PdAdel in reply to soup]

I am my husband's "caregiver" as well. He is totally dependent upon me except when he wants to take care of something himself. Then, when it is all a complete mess, he wants me to fix it. It is a frustrating situation for us both. He needs me to take care of paying the bills but is upset that I wrote the checks even though I get him to look at the checks and sign them. He wants to get the mail and go through it all, but then misplaces it. We are constantly looking for his phone, checkbook, wallet, hear aid, etc. He wants me to keep up with his meds, but will take meds without telling me. It is so hard for him. It is so hard to see him struggle. We love each other dearly and stay strong "together". PD robs us all.

[OCT511 in reply to PdAdel]

PdAdel, when was your husband diagnosed? This may be one of those insane questions, but are you able to set aside "you" time? Or has that ship already sailed?

Sometimes it seems like balance is difficult to achieve -- as in, finding a balance between caring for dad and living my life. Any tips? Anyone feel free to answer, I'm not picky.. promise.

[OCT511 in reply to soup]

We could always go with CFM (Caring Family Member) -- more of an official sounding semi-acronym, perhaps?

I'm so new to this, yet I understand the entire "frustration, pleasure, and fear" statement. I tend to view it as a roller coaster ride and just do my best every day not to fall off or get derailed.

Thank you for welcoming me to the community.

[NMelody]

Welcome!

I too am involved with the PD Community because of my dad. Once he was diagnosed I found out everything I could for him and for us, his family. I went to Washington DC in March with the Parkinson's Action Network and spoke to legislators on Capitol Hill. I sought out support groups and Web sites.

I think the most important job I have is keeping my dad active. If that means kicking his butt when he doesn't go to the gym or recruiting him to take my kids to school, I will continue to do so. It also means reminding him of the good and bad news- he has Parkinson's. Things could be much worse!

Continue to read and share with your dad. I know mine is very appreciative of my involvement!

Nikki

[OCT511 in reply to NMelody]

Hi Nikki,

You sound a lot like me! In the sense of diving right in and finding out all the info you can about the disease AND trying to keep your dad active. When was your dad diagnosed? That's great you get him to take your kids to school.

Any tips on the balancing act of your life and caring for your dad?

I've noticed my dad's symptoms getting better since he switched from Carbidopa to Mirapex and Azilect. It's nice to know that they make a drug that can slow the progression -- gives me hope that they may be close to a cure or at least something close to it. So, you're absolutely right, it could be a lot worse! Thanks so much for your optimism!

Crystal

[Jenifer]

Hi, I am also a "caregiver", my father has PD. He was diagnosed approx 15 yrs ago. He still does well with my mothers assistance and my frequent check-ins. His worst problem at this point is falling, hes a bit stubborn about using his scooter (tho doing better lately) as the walker is not enough to stablize him and he has "freezes" way too often. Although the falling episodes are more related to sudden position changes and drop in blood pressure. The PD is controlled at best with Sinemet, a large dose 3x a day and an as needed smaller dose in between. We have tried several other meds but within a week of starting each of them, he began to be delusional, hallucinating and we had to stop.

PD is such a difficult disease to deal with, but it can be done!! One day at a time and prayers get us through. I have done much research on the "brain surgery" that is available to control PD. It sounds great but have heard good and bad experiences. Not sure my father is a candidate with all his other health issues, but it is certainly something to think about.

We all must stick together in this. The support I have received from this website means so much. I welcome any thoughts/ideas/suggestions from all.