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adiaz

Share Your Story with NPF

5 posts in this topic

Share Your Story with NPF:

 

Are you living with Parkinson's disease?

Are you a caregiver of someone living with Parkinson's disease?

Are you a loved one of someone living with Parkinson's disease?

 

If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009.

 

Go to www.parkinson.org/ShareYour Story

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Where do you turn when the one who helped you make the finanacial living, help you sort out you problems, is now hasPD HE'S NOT THERE ANYMORE TO TALK TO. Where do you turn! I feel lost and isolated, and i know i am not the only spouse having to deal with this He's not ready to go nor am I ready for him to go. BBut he's sure actting like it's close. I do believe he's in the demnsia stage

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I feel like you. My husband has PD, but I feel so lonely. My demeanor has changed---I don't enjoy anythng anymore. I feel like a care giver and I want to feel like a wife! He doesn't like me to go to the grocery store or anywhere without him, but then he sit in the car and is miserable. I can't go shopping for clothing, etc, because I know he is sitting in the car waiting for me so I have to hurry. I know I can't go on like this for very long. We live in a town of only 1000 people---45 miles from a city, and I feel clostraphobic. I have lost my desire to go to Church---work in the yard---go visit people-----I am afraid I will be getting sick and then who will take care of us??

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Share Your Story with NPF:

 

 

Are you living with Parkinson's disease?

 

Are you a caregiver of someone living with Parkinson's disease?

 

Are you a loved one of someone living with Parkinson's disease?

 

 

If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009.

 

 

Go to www.parkinson.org/ShareYour Story

 

 

 

Hello everyone!

 

My name is Leanne and my father was diagnosed with Parkinson's in and around 7 years ago (he is now 62 yrs of age). It has taken me some time to wrap my head around what has been happening with him - to the point that I know I will probably never fully be able to do so.

 

I don't really know where to begin... I guess the issue is that I am frustrated, angry, and heartbroken over how this is affecting him and how it is affecting us - his family.

I should also state that my Dad, thus far, refuses to try out local support groups and my Mom won't go to a support group for herself. My heart aches for their situation because they are just settling with 'managing symptoms' as opposed to 'living life'.

 

I try to offer my support by listening to my Mom (I live in another city but we talk on the phone regularly). Although I talk briefly with my Dad, I feel I have given up on really talking with him as he refuses to communicate with us about what is going on with him on a daily basis. My fear is that HE has given up on himself and on life.

Depression is of a concern today and Dad has refused meds in the past but is now looking at them since his last appointment with Dr. Stoessel at UBC. I was told that they need to wait for the okay from Dad's cardiologist before he begins anti-depressant / anti-anxiety medication.

 

I will tell you a little about my Dad and how PD may be affecting him -

Dad's symptoms largely consist of muscle rigidity and bradykinesia (there are little tremors to note - and the ones that do show up are hard to tell if they are a part of the disease or if they are anxiety related - something he has always had issues with, although he hid it very well). He has a pacemaker due to prior / ongoing issues with atrial fibrillation and atrial flutter and has ongoing double vision which has not been corrected by various uses of prisms in his glasses (also of importance to note, 'head drop' does not make him able to use them efficiently). It is my fear, now that Dad's eye surgery has been booked for September, is that he is putting all his eggs in one basket on being able to see properly again. His words, "I just want to be able to drive again."

 

I can only imagine the loss of independence he has endured and it 'kills me' to watch his life unfold recently (I spent the past 3 weeks with my husband and new baby girl at their home) but I am angry and saddened by his choices to ignore the reality that is his life and watch him struggle. I know I can only offer my support and suggest from time to time to try out a support group but I am utterly powerless - I guess I am having trouble with accepting this powerlessness - it is his life and it is my Mom's life too - and however they want to deal with it is their right. I get it, I just don't know how to deal with the emotions that I am experiencing.

 

So, in a new effort to obtain some support for myself, and in an attempt to leave behind this notion that I can somehow 'fix' my parents' lives, I just need to know that I am not alone.

The birth of my daughter has changed my life completely and I want it to be of a positive nature; I am attempting to remove or distance myself from my parents' situation but am unsure how to do so without also taking away my support and their knowing that I care and love for them greatly.

 

Please help and thank-you for any words, etc. you may offer.

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Leanne,

Talk to your dad. Don't talk about the disease if he doesn't want to because you can't make him. Tell him about your life and what is going on. Enjoy your new baby because it is a special time. Send them updates, pictures etc. My DW will not even talk to me about the future so don't expect your father to, as everyone handles things differently. Your mother will need support so make sure to tell her about your life and make sure she takes care of herself. Being a caregiver is hard and she might have to plan for the future.

 

There is a lot of info on this site and others. See if your mother will join an on-line support group as there are many.

 

Keep your chin up,

 

Coach T

Edited by coacht

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