just need to say a few things..... - Parkinson's Disease Message Board

simtusie · 04-30-2003, 11:25 AM

Hey everyone! It has been so quiet in here lately, I was just kind of wondering what was going on with everyone. I hope you don't mind, but I need to let out some thoughts and emotions. read if you wish, ignore if you wish, but thanks for letting me post it.

I have been feeling kind of emotional. I was just diagnosed with young onset parkinson's disease in january, at the age of 36. I have had symptoms for years, but that is not what I want to talk about right now. I have spent the past months trying to understand what it means to have PD in my life, in my family. I have been watching my family struggle with trying to understand it. I have been watching some friends pull away from me, and others have come even closer. I have seen the disappointment in my family's eyes when i tell them I just don't feel up to doing something, and their concern when i do something when I really should be resting. I have been watching the ridiculous expenses of doctors and meds. I have seen pity in the eyes of people when they first find out I have PD. I have been so very grateful for every kind word and bits of encouragement I have received from family, friends, and even strangers. I have had some denial- which led to me not taking my meds for one day and suffering because of it. I have been sick for days four times now from trying to adjust to meds that will ultimately make me feel better. I have searched for a support group in my area, and I found one and plan to go to the next meeting in a couple weeks, but the average age of the people is 70. I know they are going through the same physical stuff, but can I connect with them on my every day struggles? Will they accept me in their group? Will I want to be there? I am 37 years old and I have PD! I am so scared of this disease, I am so worried that the burden will be too much for my family. I forget so many things, things on every level, from very important to insignificant. It just doesn't matter. If I don't write it down, I will forget. If I don't carry the note in my hand, I will forget to look at it. I forget what I am saying mid way through a sentence. I have lost my desire to read a book because I can't concentrate. I read the same page over and over and still couldn't tell you what it was about. I drop the hairbrush when I am trying to brush my hair, that's why I wear a bun so often. I drop my toothbrush when I am brushing my teeth, that's why I have a battery operated toothbrush. I am scared to drive. I had one near accident so far, thank goodness the other drivers were paying attention. I have almost gone in the ditch a few times. My response time is at an all time low. I am talking about response to everything, physical, thinking, speaking. I get dizzy. When the meds wear off, I stumble instead of walking. I am 37 years old, I have a great husband, I have two teen kids, I have three cats, a dog and a house. I have parkinson's disease.

Googy · 05-01-2003, 10:59 AM

Hi Simtusie,

There are many that read but dont post.I'm glad you can get your thoughts out.I was trying to think of something to say.I remember all the things you spoke of.Bill was 52.My son was 11 two older daughters.He use to go camping with his Dad.It was harder on him they did so much together.He still has a hard time.My daughters try to be there for me.
Your family will see you through this.

Blessings,

Googy

[This message has been edited by moderator2 (edited 05-02-2003).]

simtusie · 05-02-2003, 08:48 AM

Thank you Googy for your kind reply. Here is a quote that I think would be perfect here:

"Knowing what to say is not always necessary; just the presence of a caring friend can make a world of difference." Sheri Curry

So, are you "caregiver"? I have been on and off this board and have read a lot of posts from everyone, but still not really sure who is who or what everyone is going through.

I was quite saddened by the passing of simby's dad, not even knowing simby or her dad other than reading some posts, but I felt it in my heart. PD is a monster, an extremely unpredictable one.

Thank you Googy for listening (reading) and taking the time to reply. You have managed to validate my feelings, and that in itself has made me feel better.

Have a great day!!! Simtusie

simby · 05-03-2003, 04:57 AM

hi sim - thank you for your kind words. I am sorry about your pd. It is an ugly disease. I hope they find a cure soon.

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(the truth is out there)

Googy · 05-03-2003, 07:59 PM

Yes Simtusie,I am a caregiver.Bill has had PD for 29 yrs,still at home.I have a N/A every day for three hrs.Simby also took care of her Dad till he passed away.
Love to you both,

Googy