simtusie
04-30-2003, 02:25 PM
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.
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.
Sponsor
Googy
05-01-2003, 01:59 PM
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).]
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, 11:48 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 :D
"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 :D
simby
05-03-2003, 07:57 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)
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(the truth is out there)
Googy
05-03-2003, 10:59 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
Love to you both,
Googy
conchata
05-07-2003, 11:58 PM
Simtusi,
I read your posting a couple of nights ago. I often read, but have never posted. I was touched by the honesty of your writing.I am so glad that you have this forum to "vent". My husband was also is a victim of PD, for about 9 years. It was also confirmed that he did have PD at the age of 36.
Your family will be there for you, I know.
Bless you and take care
conchata
I read your posting a couple of nights ago. I often read, but have never posted. I was touched by the honesty of your writing.I am so glad that you have this forum to "vent". My husband was also is a victim of PD, for about 9 years. It was also confirmed that he did have PD at the age of 36.
Your family will be there for you, I know.
Bless you and take care
conchata
Pelicangirl
05-08-2003, 03:30 AM
Simtusie,
I have had some problems posting on this board, so I don't read it as regularly as I should.I just now read your post and was quite taken by it. I have had PD for 15 years and I was dx'd at 44. I have had the Deep Brain Stimulation surgery which helped so much.
If you want to think about some good things about having Parkinsons now, they have come out will all kinds of medications to relieve the symptoms in the last few years and while the operation doesn't cure the disease, i feel like it gave me at least 10 years back on my life.
So look on the bright side (if there can be one with PD): You probably have the best chance of anyone to still be alive when the cure is found, and I DO believe it will be found eventually. The new meds can help relieve the symptoms, and there's always the surgery.
Just keep those friends who have come closer to you and try to educate those that seemed to have put more distance between you and them. Sometimes they have a fear that they will get it (not true) or really don't know how to react, so they pull away.
By all means, go to the support group. You will be surprised at how they accept you and you might just find someone else who is Young Onset too. And even if you don't, just think of the insight you can give the people there who are older. They have probably never thought about the problems someone who is younger has. I have been going to a support group for about 10 years now and have never regretted it.
Hang in there. We are here for you!!
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Pelicangirl (aka Ruth)
I have had some problems posting on this board, so I don't read it as regularly as I should.I just now read your post and was quite taken by it. I have had PD for 15 years and I was dx'd at 44. I have had the Deep Brain Stimulation surgery which helped so much.
If you want to think about some good things about having Parkinsons now, they have come out will all kinds of medications to relieve the symptoms in the last few years and while the operation doesn't cure the disease, i feel like it gave me at least 10 years back on my life.
So look on the bright side (if there can be one with PD): You probably have the best chance of anyone to still be alive when the cure is found, and I DO believe it will be found eventually. The new meds can help relieve the symptoms, and there's always the surgery.
Just keep those friends who have come closer to you and try to educate those that seemed to have put more distance between you and them. Sometimes they have a fear that they will get it (not true) or really don't know how to react, so they pull away.
By all means, go to the support group. You will be surprised at how they accept you and you might just find someone else who is Young Onset too. And even if you don't, just think of the insight you can give the people there who are older. They have probably never thought about the problems someone who is younger has. I have been going to a support group for about 10 years now and have never regretted it.
Hang in there. We are here for you!!
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Pelicangirl (aka Ruth)
simtusie
05-10-2003, 07:30 PM
Thank you everyone for your replies. I am feeling much, MUCH better now, just had to adjust to the meds increase I guess. I still get frustrated, but not like I was that day! Thank goodness!!
I have searched high and low for a young onset support group, can't find one within 100 miles.
After talking with hubby and some friends, and another local young pd person in the area, have pretty much decided to start a group. I have a lot of phone calls to make and a lot of information to gather first, but the need is here in my community, and there are enough of us to have a pretty good size group.
If anyone reading this has started their own support group, I would appreciate any and all advice you can give me. :)
I am really excited about this!! Thanks for being here for me!!! Love, Simtusie
I have searched high and low for a young onset support group, can't find one within 100 miles.
After talking with hubby and some friends, and another local young pd person in the area, have pretty much decided to start a group. I have a lot of phone calls to make and a lot of information to gather first, but the need is here in my community, and there are enough of us to have a pretty good size group.
If anyone reading this has started their own support group, I would appreciate any and all advice you can give me. :)
I am really excited about this!! Thanks for being here for me!!! Love, Simtusie
Pelicangirl
05-11-2003, 02:07 AM
Good for you Simtusie. You saw a need and you are going to fill it. I think you'll do just fine. I haven'thad the experience of starting a support group, but I'm sure others have. But i'm just sure that everyone who you contact will be so happy you are starting one that they will come.
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Pelicangirl (aka Ruth)
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Pelicangirl (aka Ruth)
Googy
05-11-2003, 10:21 PM
Nice to see you back Ruth.Bruce is having the same problem.
To you all and greeting to our newbie.Conchata.
The support group is such a ggod thing.I will see what I can find out.
Love to you all,
Googy
To you all and greeting to our newbie.Conchata.
The support group is such a ggod thing.I will see what I can find out.
Love to you all,
Googy
Pelicangirl
05-11-2003, 10:40 PM
Thanks for the welcome back Googy. The moderator told me a secret, that if you use Netscape Navigator to get on the Healthboards it will take your messages, and it works!!
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Pelicangirl (aka Ruth)
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Pelicangirl (aka Ruth)
Googy
05-12-2003, 06:18 PM
I use Netscape.I will tell Bruce.Thanks Ruth.
Love,
Googy
Love,
Googy