.there is life after dbs. Long time to heal. Have patients it gets better.
Life after dbs: .there is life after dbs... - Cure Parkinson's
Life after dbs
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64 Replies
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I went though the same as you last year 19 years of marriage . Thought of offing myself but I still have my son to think that his father was a better Man then to end it . I had to move back with my mother . I posted the things and worse on here and they removed it . If you want to talk to me I will send you my cell # All I got to say is hang in there don't do anything stupid !! You took the first step having the DBS give it time . Last year I was in a clinical trial with gene therapy in Boston I will do another and another to get this Beast that ruined so many lives .
• in reply to
thank you. glad to see your still here.
moonswife• in reply to
Anthony, I agree that there is something odd about his social security disability. My husband gets about the same as you do. We have no minor children but pacdiver does so they should be getting an award also. Perhaps pacdiver could be helped by a disability advocate.
I live in Illinois also I don't think your getting the right amount for your disability I get $ 1988 and my son gets $950 per monthly till he turns 18 by the way my ex gets y
• in reply to
i get 900, my kids get 300 to split between them . but now on top of that she wants child support. i agree she should get something but she wants it all.
wifeofparky• in reply to
She can't get child support if you have no other income and your kids only get the $300 till they are 18.
I am so very sorry to hear this story. It is so hard to believe people you love can behave this way. So far I have been lucky in this respect, my husband has been my best friend.
I wish you all the luck in the world, best wishes Caz
• in reply to
yeah i dont understand either. makes me feel like my life was a waste though.
So sorry you have this to deal with along with Parkinson's. May God give you strength.
~~Dennis
• in reply toDennis
thanks dennis
seems to me that your wife is the one who is sick...........not you. I am so sorry Dennis......
I took care of my husband for 4 years.....while raising my 4 children. I would do it again and again.....he was my life and died way to young (44). Now ....38 years later, I am a Parky and I live alone. Maybe I am better off ????
Jaynie
• in reply toJAYNIE
godbless you. you are awesome
Man I have nothing to say to cheer u up unless she was real ugly.....I been married 40 yrs thank God my wife stands beside me....she gets bitchy but I can live with that she truly loves me I dont know how she puts up with me cant do anything hardly without falling If it wasnt for my lexapro and my antivan i be nutter than a fruitt cake not to mention a joint now and than...hang n their brother,,if i were u i would double ck on your ss..u should be gettin tthe same amount as if u were 75.i get 2200.............
• in reply toBILLYRAY
unfortunately she was super super hot. but now im at the point that i had to quit working, i supported her and the kids for years while they were young. now im on disability and she has to work, not happy, she was good with being a stay at home mom. but yeah when i go back to hawaii, i will be homeless, you casnnot survive there off of what i get.
BILLYRAY• in reply to
why hawaii...isnt that were obama grew p shoot moved to alaabama'
You are so funny....unless she was really ugly....love it. I also have PD and am very lucky to have a wonderful husband who loves me and sticks with me. Love your humor......made my day...
it is easy to laugh..but a lot easier to fall....jeni we are blessed to have a spouse that sticks with us...God only knows were i woud be without my sweetheart,,companion...best friend....my wife of 40 yrs...
I too Jeni like BillyRay's sense of humor. That poor guy deserves someone better anyway. I was diagnosed at age 40 and now 43and I am progressing fast. I also have a wonderful husband.... been married for 20 yrs, this month. He loves me unconditionally and is always by my side and won't ever think twice about wiping my a_ _ ! lol not that he has yet...just saying that is the type of man he is. He does help if he sees me struggling to get dressed or cut my meat on my plate. I don't know what I would ever do without him !!!
I was diagnosed at 45, still not taking any medicine....I am going up to Chicago this Friday to be in the MJF study....1st one for me. I thought if i wasnt on meds I could help out with more studies....wrong...
Do you live in the states? if so where? I have no one close to my age to talk to....
do they want you to be on meds for these studies? no meds yet for you, you are so lucky! the dr. started me on them right away. sometimes i honestly believe they make me feel worse.... i take carbo/levo and pramipexole dihydr every 2 hrs starting around 4:00 am i don't sleep well. i'm not sure if the meds are taken to frequently, wrong combo for me or just the disease itself. he's been playing with my meds since my diag., not sure they will ever be right. im seeking alternate medicine to maybe help so i can cut back on my meds hopefully. yes, i live in ohio. where do you live? u said u were diagnosed at 45. how old are you now?
Oh they wanted to put me on meds right away, I wanted to wait. I am 49 now. They miss diagnosed me when I first went to the dr. with Essential Tremor. I have tremors on my left side but just deal with it. I will do it as long as I can. There is NO medication to slow the progression of the disease so I am in no hurry to start them.
I live by Champaign, IL. I work at the UofI. I will work as long as I can. I have a great loving husband and a 31yr. son who help me. My son live in Northern In. and he is always looking up Parkinson;'s for me.
I had my 1st fundraiser this past may and our support group will participate in the Oct. Disibility awareness fair. I try to do what i can,,,,
I get depressed, sleep is really crappy.....I take larazapam to help for sleep..helps with the tremors to...and depression.....
I just wish i could meet someone close by that is close to my age and disease level. most around my area are more advanced or older.....
The only thing to tell you is I (at 63) met my Partner after I was diagnosed (at 59) and we fell in love, I would not allow us to move in together until she had been to many, many PD meetings and events to see what could happen to me (the bad) and the wonderful people and research going on (the good)
We enjoy a full life and have done for nearly 5 - she accommodates me when I have the occassional bad day - BUT I must add that I don't feel sorry for myself and exercise constantly to keep in the best physical shape I can
Meesage "Don't give up hope, Keep Fit and go out and meet people" - the British SAS have as their motto "Who Dares Wins" - Good Luck
• in reply tofroggatt55
i agree i exercise constantly, ive always been fit (worked as a ff/medic) had no choice but to stay in shape. i lift weights, found out i can still ride a bike. so i race bmx also. i cannot run anymore. but it helps. icannot help te feeling sorry, my family was my life, i did everything i could for them, now i need help and i get kicked to the curb.
You go out and exercise constantly. I used to do that and did well but now into the parkinson's I can't hardly get to the gym let along working out. Some days I can walk fine buy by noon I am hardly walking and by 6 pm I am "shot for the day."
Glad you are able to get out and about. I am disappointed that Parkinson's has
all but stopped my life in space. I do get depressed at times. I would like to travel and go on vacations but the pain would not allow me to sit in a plane very long for a flight. Just to be in the car 45 minutes and I am in pain and my legs tremor. I hope not many experience this at all or at least to a tiny degree. ~~~Dennis
I am truly sorry to hear about this. My husband has PD. It's been 8 years and the doctor says he's one of the worse that he has seen,but I wouldn't leave him because of it. It's hard, but I know it's even harder for him. She's selfish and it would have been something else if you hadn't gotten PD. There's nothing to say to make you feel better, but after reading all the comments over the months we've been on this site, I can truly believe that for you and me things will get better emotionally if not physically. Hang in there you have children and they can be a lifeline in all this. Keep reading and leaving your thoughts here. You will be surprise at the help this site brings. Thinking of you.
• in reply toDANIEL
this was touching, thanks to yyou for your kind words
thank you for all your comments. im good with giving advice (im a retired medic), but not with asking. so thanks for all your comments. i scare myself with what goes through my mind. im tired, depressed, felt like offing myself, thanks for the hope. some of you have some awesome spouses, make sure you tell them everyday. thanks again
Kat00• in reply to
If you are deeply depressed and having thoughts of ending it all, PLEASE tell your doctor. Parkinsons can cause depression all by itself and you are dealing with so much more! Are you currently on antidepressants? We all need help sometimes...don't be afraid to ask for it. There are so many people here who are willing to listen. Glad you are sharing...you are not alone!
tmhiggs• in reply to
you deserve someone much, much better.... a REAL woman. It takes a selfish. little coward to turn on their spouse, lover, and best friend the way she did you. you said she was super hot.... well i'm sorry to say you can't always judge a book by it's cover. just hang in their, k !
Pick yourself up dust yourself off and move on. your wife has made it perfectly clearthat she wants to divorce while she's young there's 900.00 a month you can't afford to live in hawaii on that.12 months to heal from dbs surgery? mine was done on a friday and my brain surgeon said I should be fine by Monday.
So sorry for you, I have looked after my husband for 18yrs worked fulltime got kids through school and university etc. Its been hard but I wouldnt have it anyway, when he had a heart attack last year I was so scared I was going to lose him. I gave up smoking as soon as he was diagnosed cause I knew I had to be fit to look after him. He is a darling we have our times of course but what couple doesnt, You say no one else will bother with you because of PD love conquers all do not give in, it will pass. Keep striving to be as positive as you can, take care , will say a little prayer for you x
Well I know your a strong person and can recover from this as your job was and is proof, I am a Parky (love the terminology) in the U.k. and I have been watching and listening to ANTHONY ROBBINS this guy you have over there is the best. The thoughts you think affect you Parkinsons is a double blow like any movement related condition it's the way you deal with it that makes a difference. What is this op you had we do not get that here. Take care my friend sort out your money we get £1200 MONTH PLUS CAR but that equates to $1800 we are allowed to work from home on the internet I can help with that even from Hawaii. I am moving to Murcia soon in Spain for the winters and I find giving help to others helps too, I am going to help a animal foundation it keeps your mind busy. I got it at 46 now I am 57 it does not govern me I am in charge and I take each day as a blessing, have faith ask if you believe for hlep it WORKS....
The only thing I can say is your wife must not have loved you like she should have. My husband has told me a couple of times that he is in it for the long haul.
I am not married but have a boyfriend that i live with meet him one year before was diagnosed the fear is always there that one day he will want someone whole. My thoughts are with u. This has to be a bad bad time. I am so sorry u have to deal with this and the horrible pd. I am 54 been doing this for 7 years had the dbs that was a good thing. If there is anything i can do if you just need to talk. Anybody grammie5876@yahoo.com dena
its your wifes loss, yes its hard being single without having pd. im 47 and single and on low wage, but i get by with love of friends and an amazing family. it will be difficult but you sound a strong man.
my marriage broke down yrs before i was dx so divorce can happen to anyone, yes at the time i thought my world had ended, but then found out about the affair he had been having for 2 yrs and who was pregnant, then great advise from lawyer... the best form of revenge is getting on and moving on,
this i did lost the weight new haircut and colour, yes i took great pleasure telling him where to go when he asked to come back... so yes things work out and it will for you
NEXT CHALLANGE ..... BEATING PD AS MUCH AS I CAN,
people on this site are brilliant, have helped me when ive been so low ,
keep in touch and your chin up
Your wife sounds like a self-centered narcissist (is that redundant)? Find a good free lawyer and get alimony. Get half her pension. I was so fortunate that I shed my husband who I supported many years BEFORE I was diagnosed. Even with it I met the most wonderful man who waited on me hand and foot for 4 wonderful years. You have PD it does not have you. Where is the social worker associated with your surgeon's office? Post surgery is no time to be flying around. Keep us posted! We are all with you.
Well pacdiver I'm tempted to say that you are better off without someone who has turned their selfish ideas into reality. The sort of ideas most people would only think about in a daydream longing to be released from their burden not to be released from their loved one.
Now when you say that there will be no-one who would want to become embroiled in a relationship with someone afflicted as you / we are, I suspect that there are indeed such people and it is only necessary to locate one such.
I feel sure about this. There is such a wide variety of people out there that there is bound to be one for you.
It does occur to me though that you may have less luck if you set out to find someone specifically to care for you rather than finding a friend who coincidentally is prepared to care for you. I don't feel I have expressed that very well but I expect you know what I mean.
Good luck.
I'm 49 and was diagnosed 2 1/2 years ago. The previous responders are right; if you haven't already, look into counseling and antidepressant. My neurologist explained to me that depression often comes with PD. I have experienced severe clinical depression and am usually a very happy person. I also exercise and find it to be helpful! I agree with the others; you're better off without someone that's going to bring you down. After all, stress makes this condition's symptoms worse. When I'm feeling down, I like to think about a saying I heard - Just when you think everything is falling apart, it's actually coming together. I take that to mean - when things are awful, unbearable, there is a better path that's meant for you and you will find it. Lastly..."Surround yourself with only people who are going to lift you higher" ...Oprah.
Hang in there and know you have a lot of support! Blessings
So sorry to hear that your wife is being a total jerk. I was diagnosed with PD about 4 years ago and had DBS 1 1/2 years ago. My wife is the greatest person and friend I've ever had. She has stuck beside me through everything we have been through for the last 15 years.I love her to death. Hope you find someone to love you enough to want to be with you for better or worse.
We too have a lot in common. I was diagnosed 7 years ago and divorced immediately after 25 years of marriage which was admittedly already rocky.
The 1st time i went to the clinic they said I looked quite ill and needed to destress. The next time I went, the doctor said I looked 100% better, and asked why. I told her I got divorced and she laughed.
7 years later at 56, with a couple of odd relationships, a move to another continent, living with parents for a while, not able to get a job; i now live with a small dog, not far from my family. Apart from missing my grown up son, i can honestly say i am much happier and live in hope that a cure is around the corner.
There are many of us out here to talk to. Don't give up. we need to make ourselves available for testing so that future generations don''t have to deal with Pd.
love and hugs
• in reply to
wow real similar.
Hi I am so sorry to hear what you are going thru. I to was in a relationship for 23 yars when after I had the DBS surgery, they were happy that I was doing better because now they felt better about leaving. I was told that they could not deal with the disease, it was to hard for them. My comment was how do you think I feel, I'm stuck with it. So I do understand what you are going thru, there are alot of times you just want someone to talk to and find that there is no one there. Hopefully tho your children will be there for you, my one regret is I have none, but it's all good. One thing to rememeber tho iand this has helped me alot, and the ne person wo is always there for each of us is GOD. He has helped me thru the hardest times. If it wasn't for him not sure if I would still be here. Now I'm enjo ying my photography and that helps me alot. If you ever need to talk you can contact me at chomps44@aol.com. I am a very good listner, just not a good speller anymore. lol. Humour helps an awful lot to. But keep your chin up from what I've read from everyone here you have an awful lot of support, wish i had found this back about 2 1/2 yrs ago. but I also understand about not finding anyone either , I had said the exact same thing. You do have a lot of support here. Please utiize it, it will make this jourey alot easier, i'm sure. hope to hear from ya.
I am sorry that your wife has left you because of your condition. I will keep you in my prayers and please, don't give up hope. If you need someone to talk to, please send me a message anytime and I would be happy to discuss any concerns you might have.
B.T.W. I too, have PD/Possible M.S.A. and also Dysautonomia. I know what it is like to live with a crippling illness. I have been on S.S.D.I. since 2004. Take Care and God Bless
• in reply tousa55
mahalo nui loa my friend. she just wants to hook up with another while she still young, she has all fake parts, she wont age, also since i get very little disability, shes mad that she has to work now. said shes gonna try to get someone with money, before i had my dbs surgery, i basically couldnt move i just lied there in bed, my off times were tragic, used to fall every day, choke every day, now 1 year after surgery my off times are super short, i can run again (used be a killer distance runner in high school ran mile in 5.07, 14k races in 34 min. ) and i got kinda fat from living like that for about 6 mo. remember ive had pd~10 years. now 1 can run just not as fast, i race bmx bikes (my son will be going pro soon rides for redline team), i feel better than i have in 6 years.
I'm sorry your wife is so weak. My husband was diagnosed 5 years ago and we will be married 42 years in August. I am still working because I need insurance. It is not easy but I keep plugging along and so does he. There are days when I am stressed and want to lash out but I make some me time and we both keep on going. Wish I could give you a hug. Hawaii is very expensive but I'm sure you want to stay near your kids. When you get back, find a support group or speak to your Movement Disorder Specialist. They should be able to help you with housing and other services.
• in reply towifeofparky
i doubt ill be back, hawaii is my home, i left to go to my mothers (in vegas at the advice of my dr) to heal up, im hawaiian, she american, yes hawaii is expensive. i wont able to afford it, but i have no choice, she s filling their heads, full of not so truthful things, but if your gonna be homeless that is the place to do it. she is weak, thanks for the kind words.
Sorry Pac,
Do belive in God and prayers
Always church socales to meet new frindes.
Hang in there Pac
BB66
This is just so terribly sad. When people split up there is always anger and resentment. Maybe her behaviour is due to the enormous guilt she is feeling about leaving you when you needed her..
Maybe as your disease progressed she saw her own life slipping away and decided she needed a different life where she would be looked after not the other way around.
Who knows, but i do know that it is better to be on your own than with someone who lives with you 'under sufferance'. Now you have the chance to find someone who will love you, warts and all, knows about the Pd right from the start and loves you anyway.
she wanted to leave while she is still young , well that works both ways, you are still young too!! and despite what you may feel at the moment you have every chance of meeting someone special. Let go of your wife and your anger, it will not help you, and move on. Find that special person..
I divorced after 13 years and 3 children (my husband left) I remarried 21 years ago and we are still, very happy together (he even loves my tremor especially as he can tell how excited i get when we are together)
Go find that special person for you.
• in reply tocarolineb211
ha its kinda like a dog wagging its tail. funny but true,
I hear your pain. My wife did the same to me about 6 years ago. She came home from a business trip as usual and gave notice that she did love me and wanted both my son (from a previous marriage) and me out. At that point I had been living with PD for about 4yrs. I have learned that unless you are with someone that is deeply commented to you and the marriage vows then you are almost certain to spend life alone. I have given a chance to a relationship twice but when and as they learn more about what lies ahead they then change directions. So I have to concentrate on me and my health. To add to this battle I have had to have one knee replaced, and that has been a nightmare and I have the daily struggles with arthritis in both hands and back.
So sorry to read your story. Your kids will eventually seek you out and help. In meantime, get near your family that will help and church support and pd support group. Seek out a psychiatrist for depression meds. Join an exercise class. My husband is in a water therapy class and it has worked wonders on his outlook. Try and keep only positive thoughts. Life is a crazy rollercoaster and it is your turn to make the lemonade .
I am a carer for my husband,we live in the UK ,I met him in 2001 and we married in 2002 ,he was diagnosed in 1998 at the age of 35 but had shown symptoms for about a year before that.He was married when he was diagnosed and she divorced him saying she was not going to care for him .
Don't give up ,as I keep telling my hubbie ,its him I love and the PD is just an extra we deal with along the way.I wanted to help him all I could so when we saw his specialist I wanted to know what was new what trials were going on.
I now care for him full- time but as I keep telling him ,it's what you do when you love someone.I'm not saying it's easy we both get frustrated but we talk to each other .
What makes her think she can find another man.It will not be easy.On the other hand-you have plenty of friends-just keep logging in.
I was dx in March of 2009 at 40 years of age. I was in a loveless marriage and regardless of PD it was not going to keep me there. Now 3 years later, I've met someone who I think is the love of my life. Part of the reason he fell in love with me was my fighter spirit and positive attitude despite PD..........that and I'm super hot (he he). Chin up! There are people out there who will love you for you and not give a rats hiney about the PD. The PD isn't preventing you from meeting her.......that heartless wife of yours is. DIVORCE. I can't imagine a judge wouldn't empathize with your situation and rule in your favor. Why be homeless in Hawaii when you could start over in Las Vegas?
PS: Baaaaaad Karma. She's going to wind up with a douche bag jerk regretting leaving the man who really loved her. Some people have to learn the hard way.
Who knows. I could be next. My wife of 15 yrs has really put up a lot from me [ ok, my parkinson] since I've been taking meds in 2005. It really boils down to the unwanted side effects of my Meds with a special note to the infamous Mirapex and the impulse control disorder behavior which can develop within most but not all Mirapex or dopamine agonist takers. My main behavior disorder being hypersexuality. But I do have to admit and thank the man above us and to her that she is definitely commited to staying and keeping our relationship alive and strong 'till, "death do us apart". She has a strong Catholic upbringing and strong family values that so far she has put up with and withstood the worst possible times and/or indiscretions on my part arising as a result of my hypersexuality. In addition, she is fully aware of the side effects of the dopamine agonist medications and the possible unwanted side effects that can afflict users like me and their relationship with others in great proportions.
My neurologist is aware of this problem and has decreased my dosage with the hopes of eventually discontinuing this medication. But he is also fully aware of how Mirapex in turn helps me tremendously when it comes to helping me with my motor symptoms. Yes, although this medication plus others similarly do have the potential for developing impulsive control issues, on the other hand I wouldn't be able to function properly if it weren't for the availability of these medications. So what to do? Well I do give my wife all the credit she highly deserves
for putting up with me in more ways than others.
Well, Packdriver, I don't know what else to say about your marital situation, but I do know that whatever happens it is bound to happen and what goes around will come around.
Stay strong and I hope things will eventually work out for you and for your wife and other love once.
Take care and if you feel the need to discuss things further I am certainly open and approachable and willing to help.
Dennis I am sorry for your situation but realize it is your wife who is the one who really looses in this situation because she is loosing the most important part of herself and that is to give of ones self... If she left you for your PD that was just the excuse. But sometimes we also have to realize there are some people that just cannot handle any trama or illness in life, they quit and move on it's the way they are and they can't help it. It doesn't mean they didn't love you it just means they can't or don't have to deal...BUT Please don't think that no one will ever want you or love because you have PD.. There are people who look at YOU and your heart and soul and not at the disease. My mom met a great guy after she was Dx with PD and he helped her and loved for many years.(he died of cancer). My nephew met a beautiful young woman who was paralyzed at 16 but he didn't see that. he saw her.. They are married and have 2 children. My husband has seen me through 27 major surgeries at least 1 or more hospital stays every one of our 30 years of marriage and PD so believe me if he can do it, Dennis there is someone out there who can love you and help you through this... be patient, keep the faith and hope, it is never easy all we can do is take one day at a time, one minute at a time and no that there are others out there care about you... when you get to Hawaii contact the National Parkinson Foundation Hawaii.. will you be on Oahu? I am on Oahu Aloha
Stephcabo
u should be gettin more than 900 ss benefits pay more than that they give u the same thing on ssd as if u were at your maximine age 78''''''''''''''''unless u didnt make that much money ''
Ok Pacdiver, want to get married 
My husband will not acknowledge my diagnosis and instead picks fights and puts me down constantly about everything in the kitchen sink. I think he doesn't want to be saddled with me, but can't reconcile his image of himself as a great person with the kind of guy who leaves his wife of 25 years when the gets this diagnosis. So he calls me lazy and clumsy. Seriously. I am still working but it is hard. What a weasel, I would have stayed by him.
Not everyone is strong enough to care for someon with a serious illness . If shese not up for it she might be doing you a reall favor cause would you want a caregiver who resents you and considers you a burden ? That would be toxic as hell . I do think what she says about surgery and your measly dissability is pretty nasty though .
I'm sorry. For better or worse are probably the vows you both exchanged 25 years ago. Unfortunately, this is how people are in this world. If I ain't getting want I want or if the others person isn't making me happy anymore, then I'm moving on. You can't make the other person change how they are thinking or feeling. Don't try because you will only frustrate yourself. Have you guys tried counseling? I'd recommend, if possible, staying close to your family and not knowing your spiritual life, try to find a strong Christ centered church to begin associating yourself with. I struggle with PD and the idea of true love on a regular basis. I've found comfort in hearing, knowing and learning about the One true love that will never flake out on me because I'm not meeting their needs or if my PD is becoming too much for them to deal with, and that's the love if Jesus.
Thinking of you during this difficult stage in your life & praying for your wife.
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