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Archived Messages>
DBS. Should I? Did you? [1-30-05]
10 Mar 2005
| From: sherry4-10 (Original Message) |
Sent: 1/30/2005 4:41 PM |
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Hi, I am new to the group and would like to hear from those of you that have gone through the surgery and how it went. I am starting to think about doing it, notice the hesitation, I told my Dr. no I would not do it. I am going to be 48 in March and am starting to get worse, have a dr. appt. this thursday, but am starting to think I might not be able to do it if I should start getting other things wrong with me. What if I get really bad but then they won't do it!! It is not something I really want to think about at all. I am more willing to be part of a study than to have a hole drilled in my head. I was in a study a few years ago and the drug, rasagaline, worked great for me at the time. As far as I know it still has not been approved. And as all of you probably know this disease changes so much that it won't work the same now as then, more than likely. I am also hoping that it can make me feel confident enough to drive again, I quit a few years ago. I started to fall asleep at the wheel and it scared me out of it. I also was not sleeping very much at that time. That is not the only reason tho, never knowing when I will start to have tremors, get nervous about something. I was not a nervous type person at all before, wish I could say I am not now. I hate having to count on others to bring me where I want to go, I would like to go where I want to when I want to. It's not that I don't have anybody to bring me places but I have to ask first of all and then it has to be by their schedule of course, and I wouldn't have it any other way. I just want my independence back!! I think it has gotten to be more of a problem for me b/c I moved about an hour away from the majority of my family, sisters, brothers, in-laws, etc. I have my husband, and 2 daughters but they both have 2 young children. My husband isn't much on shopping and if he brings me just kind of rushes me too much. I am very happy here, it is such a nice neighborhoodd, quiet and peaceful. I love being close to my grand kids but I had more people to visit or bring me places etc. I feel bad to count on really my oldest daughter so much. The younger one needs me more than the other way around. I don't want to sound like a big baby or anything, I don't walk around feeling sorry for myself, I live a good life. I consider myself fortunate in many ways. I know many people are worse off than I am. Well, Anybody want to share their experience with me, I would appreciate it.
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HI Sherry
Welcome to the group, I just joined too! This is a nice group to chat with. The group has been a blessing to me. I can't tell how it has helped me in just this short amount of time. I'm 28 and just dx'd 0ct 04 have had symptoms for 3 years, I haven't had any surgery but I am on meds that work most of the time. you have a tough decision to make and I know that we are all here for you when you need to talk or even laugh and be silly. I'm glad to meet you chat with you soon!
Jess
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----- Original Message -----
Sent: Sunday, January 30, 2005 4:41 PM
Subject: dbs, should , Did YOU I???
dbs, should , Did YOU I???
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| From: sherry4-10 |
Hi, I am new to the group and would like to hear from those of you that have gone through the surgery and how it went. I am starting to think about doing it, notice the hesitation, I told my Dr. no I would not do it. I am going to be 48 in March and am starting to get worse, have a dr. appt. this thursday, but am starting to think I might not be able to do it if I should start getting other things wrong with me. What if I get really bad but then they won't do it!! It is not something I really want to think about at all. I am more willing to be part of a study than to have a hole drilled in my head. I was in a study a few years ago and the drug, rasagaline, worked great for me at the time. As far as I know it still has not been approved. And as all of you probably know this disease changes so much that it won't work the same now as then, more than likely. I am also hoping that it can make me feel confident enough to drive again, I quit a few years ago. I started to fall asleep at the wheel and it scared me out of it. I also was not sleeping very much at that time. That is not the only reason tho, never knowing when I will start to have tremors, get nervous about something. I was not a nervous type person at all before, wish I could say I am not now. I hate having to count on others to bring me where I want to go, I would like to go where I want to when I want to. It's not that I don't have anybody to bring me places but I have to ask first of all and then it has to be by their schedule of course, and I wouldn't have it any other way. I just want my independence back!! I think it has gotten to be more of a problem for me b/c I moved about an hour away from the majority of my family, sisters, brothers, in-laws, etc. I have my husband, and 2 daughters but they both have 2 young children. My husband isn't much on shopping and if he brings me just kind of rushes me too much. I am very happy here, it is such a nice neighborhoodd, quiet and peaceful. I love being close to my grand kids but I had more people to visit or bring me places etc. I feel bad to count on really my oldest daughter so much. The younger one needs me more than the other way around. I don't want to sound like a big baby or anything, I don't walk around feeling sorry for myself, I live a good life. I consider myself fortunate in many ways. I know many people are worse off than I am. Well, Anybody want to share their experience with me, I would appreciate it.
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Sherry, Let me put my story right out on the table. I have DBS in Jan.of 2001,and dx May 2000, and that fast they are taIking DBS to me and hell i'm trying to get over the shock of the PD. So I did it. I was very scared, but thinking it was going to make me myself again. Well it took 10 hours and I hated every min. but i kepting myself this is all going to be worth it in the end. I had it all done at the same time. So after a couple of weeks i went in ready to have them turn it on and I was so happy (IT WORKED) all I ever asked god for was a half hour to be my old self again, well he gave me only two day, i'm sorry to say. It did not work for me, but I got over it cause it was not fir me at that time. Two years later the wires came out of my head and then I went in to have the unit taken out. So thats my story, but I have seen others with the DBS and I've seen how it really works for those lucky people my hat goes off to them. May be some day it could happen for me but not right now. So think hard and read alot and ask alot of people, cause in the end you'll see it will be a good thing if you do get it. May god bless and good luck. Lana | |
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Sherry. the two dBSI's i had in 1998 and 2001 have saved my ife. If you would likere to talk, call me at 254-366-2684 anytime.
Ron Crawford
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Dr. Ron Crawford is a retired Assistant Prof. of Counseling at Texas A&M University- Commerce. He taught clinical supervision and courses in marriage and family counseling He is 58 years old and was diagnosed with PD in 1991. He had 2 deep brain stimulation implants [DBSI's] in 1998 and 2001. His primary symptoms are tremors and weak voice/slurred speech, especially at "off" times. He retired on disability in 2002. Ron now lives in Waco, TX. He enjoys working out, reading widely, and writing [somewhat badly ] poetry.
<o:p></o:p>
Ron became Secretary of the Board of Directors of the Young Onset Parkinsons Association [YOPA] (www.YOPA. org ) in July, 2004. You can chat with Ron and other YOPAs most evenings between 8-10 pm EST at MSN’s YOPAChat group.<o:p></o:p>
<o:p></o:p>
Crawfishrc-pd@yahoo.com
Typo's are to Parkies as pigeon droppings to statues. :>)
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Thanks for your fast reply. I guess making this decision is just a shot b/c we are kind of like snowflakes with pd, no two people seem to have the exact same problems, symptoms or answers. I really hate the thought of going through so much and gain nothing, but on the other hand I might be lucky. Being informed is good, I have a really good dr. a movement disorder specialist and he wanted to do my surgery quite soon after I started to see him but I told him no. I said I already have enough holes in my head, so he just laughed at me. Hope you are feeling ok these days.
Sherry
>From: "Honey3881" <honeylb@msn.com>
>Reply-To: "YOPA Chat" <YOPAChat@groups.msn.com>
>To: "YOPA Chat" <YOPAChat@groups.msn.com>
>Subject: Re: dbs, should , Did YOU I???
>Date: Sun, 30 Jan 2005 17:50:50 -0800
>
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Sherry -
I am 48 and was dx'd in '94. I had DBS (both sides) in September of '03, and like Ron Crawford, it literally saved my life. Now, instead of handfuls of Sinemet, I take only 4mg, of Requip 4 times per day. I went from being "off" about 20 -22 hours out of 24, to not ever being completely off (at least, so far). And, from a wheelchair back to a car. Everyone's experience is unique, and there are no guarantees, so I suggest talking with as many PWP who have had DBS as you can...there are usually veterans in the chat room evenings, or please feel free to e-mail me ( mdavis5231@hotmail.com) to set up a telephone chat. Also, you can visit www.brainpacemakers.com or www.medtonics.com to hear what the manufacturer has to say. I chickened out my first go; then, a year later, I couldn't wait. Hope to speak with you soon.
Mark Davis | |
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Hi, I think if I was in that kind of condition all the time I would want to go for it too, but doing it while I'm youngerand otherwise healthy is my dilema. I'm really glad it worked so well for you and Ron. So you don't take sinemet anymore at all? They say I'm still on a relatively low dose but if I take more I can tell I'm starting to have dyskenesia. So how are you actually doing now? Are you able to work? You can drive and not feel like you will be a menace on the roads like I did. I am taking a little more klonopin now to help me stay more calm. I think I was taking too much at one time. I was barely sleeping and was kind of talking out of my head at timies. That is the only time that happened. I still don't have great sleep habits but I don't go with just a couple of hours a night. Thanks for sharing.
Sherry
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Hi Ron, I am really happy to hear that the surgery worked so well for you. If I should decide to do it I hope I can be so blessed. How long do you anticipate it to last. Don't they have to get done again at a later date? Is that always the case or can once really do it for someone. Especially someone at my age. I kept hoping they would come up with something that wouldn't require surgery, and still am. I am not desperate so I guess that is why I can say I am considering it. Thanks your input.
Sherry
>From: "CumbyCrawfish" <crawfish1@sbcglobal.net>
>Reply-To: "YOPA Chat" <YOPAChat@groups.msn.com>
>To: "YOPA Chat" <YOPAChat@groups.msn.com>
>Subject: Re: dbs, should , Did YOU I???
>Date: Sun, 30 Jan 2005 20:25:05 -0800
>
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Sherry:
No, I don't take Sinemet anymore...and I don't suffer from dyskinesia really at all currently, because I don't. But I had an extremely good result from my DBS. (Too much Sinemet or Stalevo can also induce mood swings, delusional behavior, and other forms of demetia.) In the years preceding the surgery, I had become intolerant of the agonists I was taking, and had rather gruesome reactions physically, as well as the bouts with narcoleptic occurances, never sleeping (for real), having night terrors when I did - among other things; sounds similar to your experiences. DBS for me gave me back a good quality of life - and I do work, although my professional career ended in 2002, at a local charity, and I'm on the Board of YOPA. My price tag for the DBS was impaired speech and trouble swallowing - a fair trade for my independence, and my sanity. As far as I know, the only "do-overs" are caused by infections (very rare); the battery / stimulator packs embedded in the chest and abdomen need to be replaced every 3-5 years (outpatient procedure). Unfortunately, the disease continues its decline, and there's only so much they can 'turn up' the stimulation - but my neuro says I'll likely enjoy the benefits I do now, backfilling with meds, for 5 or 10 years; but no one really knows. I try to make the most of each day, one day at a time, and work proactively for a cure. I would be glad to speak with you, or meet you in chat; just e-mail me with a time.
Mark | |
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Thanks for the welcome Jess. You are very young to have this. I thought I was young and I was in my mid thirties when it started. I really didn't get diagnosed at that age but know now that is what it was. Really felt it was at one point even though the Dr. I had at the time didn't agree with that diagnosis. I will have to tell my whole story later it's too late for me to think about typing all of that or even remembering it all. I have it saved on a disk somewhere. | |
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Hi Sherry!
My DBS/STN was done as part od the clinical trial prior to FDA approval in Jnnuary of 2001. It's hard for me to believe it has been almost 5 years!
DBS is not a cure, nor does it slow the progression of the disease..I continue to progress in my symptoms. It is another form of therapy.
However, when properly adjusted, life continues on as fairly "normal". Once, both sides has shut off, without my knowlegde, and I was totally incompacitated. I could not move, cook, eat, shower or dress alone. Fortunately, a click of a button relieved all of that!
If you have not yet read my book, "Living With the Invisible Monster", I suggest you consider it. I go into detail of my pre- and post-DBS life.
You mat also want to go to Medtronics site for DBS: www.newhopeforparkinsons.com . It is a hard decision, email me if you'd like for me to call you. Kathy  | |
Sherry4-10
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