Understanding

I'm new here I thought I would try this. I was diagnosed with Parkinson 7 year's ago. I've had DBS 5 year's ago. Going through a divorce, looking to meet a woman who understands PD . I have lived in Northern Ireland for 3 years. I own a house there and were I live now in Illinois. I'm not wealthy by any means. We all need hugs and love someone who understands.

I'm 63 I live by myself ,love music RnR , reading , art and sports

30 Replies

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  • Amen.....good luck! Good for you to putting your "wants" in writing.

  • Welcome, Tomo71! I have loved and been cheered by this site and maybe it will be a boon for you, too.

    How long are the benefits of DBS lasting for you?

    Are you Irish by birth or are you a native of Illinois?

  • I've had the DBS for five years now, I don't have to take much meds. Which means I don't have to much side effects. Like dyskinesia and dystonia. My great grandfather is from Ireland, but I am born in Illinois. My so be my ex wife is from there it is a beautiful country.

  • Well I'mnot a ladie sorry

  • Ok I got ya thanks

  • Ha ha! That's funny, Hal.

  • Better the devil you know!!

  • HI Beckey The DBS which I should have said will benefit me long time, even when I am not on my seniment or carbidopa/Levodopia when I go to bed. I take 9 to 10 tablets a day. Antidepressant and clonazepam help me with sleep. I don't know how long it will last that's up to the Parkinson which you know is battle for the rest of my life. But it has helped me a lot without it I would be worse off. Only thing it doesn't help is the weight loss . I hope that helps you. I have some Irish in me.

  • An old friend was staying with me for the holidays. She said she understood that any of the so-called "benzos" -- clonazepan, diazepan, etc -- can induce early dementia! I was horrified since clonazepan has helped me so much. Have you (or anyone else out there) heard that?

  • I haven't heard of this , I looked up side effects and it never mentioned that. It has helped me get to sleep. I just take one 0.5 I will keep checking on that.

  • I have read that also, Beckey. I take .25 milligrams for sleep each night and I would love to take more clonazepn but I don't want to start down that road. I decided it was worth taking some because of my REM sleep disorder. We're kind of, damned if we do, damned if we don't, in this situation.

  • I might have I just don't recall 😁

  • Just heard back from my doc on this. She writes, "The benzo and dementia link did not show up on a recent larger study."

  • We have the means to answer such questions: scholar.google.com/scholar?...

    Unfortunately that does appear to be the case. No distinctions appear to have been made between a low dosage to assist sleep vs. heavier use.

    bmj.com/content/345/bmj.e62...

    "New use of benzodiazepines was associated with an increased risk of dementia (multivariable adjusted hazard ratio 1.60, 95% confidence interval 1.08 to 2.38). Sensitivity analysis considering the existence of depressive symptoms showed a similar association (hazard ratio 1.62, 1.08 to 2.43). A secondary analysis pooled cohorts of participants who started benzodiazepines during follow-up and evaluated the association with incident dementia. The pooled hazard ratio across the five cohorts of new benzodiazepine users was 1.46 (1.10 to 1.94). Results of a complementary nested case-control study showed that ever use of benzodiazepines was associated with an approximately 50% increase in the risk of dementia (adjusted odds ratio 1.55, 1.24 to 1.95) compared with never users. The results were similar in past users (odds ratio 1.56, 1.23 to 1.98) and recent users (1.48, 0.83 to 2.63) but reached significance only for past users.

    Conclusions In this prospective population based study, new use of benzodiazepines was associated with increased risk of dementia. "

    jech.bmj.com/content/66/10/...

    "Results Of 1134 men with complete data, 103 (9.1%) had been taking benzodiazepines regularly at one or more phases. These men showed a marked increased incidence of dementia (OR=3.50, 95% CI 1.57 to 7.79, p=0.002), which persisted despite adjustment for psychological distress and other covariates"

  • I have a very understanding wife who is a senior nurse, and she struggles with my severe 'off period's' when I struggle to speak or put together meaning full phrases as my brain feels like it is in the crusher and my body is in a gibbet.

    We are going to get a dummy and call it Parky so we can beat the s.....t out of it. This is where the anger must be taken out on, not each other!

    The damned disease is unbearable at times!

  • We have a "dummy" named Parky at Rock Steady Boxing and we beat the s--t out of it and wow does it help. Good idea for you to get one at home and you AND your spouse can go punch it whenever you're feeling down or frustrated.

  • This is a new Parkinson's FB group, called strong and single - YOPD could be worth checking out.

  • YOPD, huh? If anybody needs me, you know where to find me ...

  • welcome! I understand your situation. my boyfriend kicked me to the curb when I received my diagnosis in May 2014. I wish I could find a nice man who understands PD, but i haven't:( I live in South Carolina, which is a bit far to drive to meet you.:)

    Happy New Year!

  • Hi Carolinagirl123, I also live in SC. Near Clemson. I am single. Maybe we could talk. Joe

  • Sounds good. my cell is 843-715-1223.

  • Hi Carolina girl

    I used to live in Atlanta. Well it is a long way from Derbyshire in UK.

    However you could email me and we could bash parky up together.

    Regards

    Alistair

    Alistair609@Gmail.Com

  • I'm considering having DBS but am very anxious about having it done. Would be very interested in hearing about your experience and thoughts on it. I have tremors in both arms and legs now

  • HI Dottie2 I thought I would be scared of having brain surgery. But I had extreme Dyskinesia and dystonia for hours . I didn't care, it was either that or take a ax to my legs that's how bad it was. But now I don't have that problem.

    I wouldn't do without it, I take less meds. I had it done on both sides of the brain, my left leg still needs adjustments. I go in to my Doctor who did the surgery for adjust it if I can't myself. It has given me a better life to deal with PD. It's not a cure but it helps you live a little better life. It's a on going battle with Parkinson as you know. Oh even when I am off the sediment I don't have any problems a little tired a little bit slower. But it has been fiveyears since I had it done at Rush Movement and Disorder Medical Center in Chicago.

  • HI Hidden,

    I am 62 years old female, I live near Chicago and go to Dr. Comella in Rush Movement and Disorder Medical Center in Chicago. I have been diagnosed with PD 5 years ago, but I am pretty sure that I have pd for a long time. Recently Pd has progressed and I have to take Sinemet and comtan every 2 hours including Sinemet ER at night. Yesterday I had an appointment with my doctor and she wants me to consider do a Surgery. I scared to the death. If you had a success surgery in Rush if you do not mind tell me the name of a doctor who performed surgery for you I would really appreciate.

    Thank you so much,

    Luba

  • tomo know what you're going through was married 25+yrs , walked out right after dx 9 yrs ago i was fifty then she was forty-two. i still work in government ( 30+ yrs ) make good money have a great pension plan I'll use after the next term in office , like to stay active

    ( yoga,golf,traveling,and nature walks etc........ ) but here in southern il its hard to find a lady that understands the trial and tribulations of parkinsons but i'll not give up looking and neither should you !

  • Thanks I'm no longer working I worked in shop for 40 years. I still be working if not for Parkinsons. I was a tool maker ran several machines until one day I sat down and realized I couldn't do it anymore. Work place got to push, work work no time to sit down for a minute. I got fatigued and thought that I would get hurt. My wife didn't want to deal with it anymore she wanted to be taken care of.

  • Hal, you are too funny!

  • Hi I am 62 and was diagnosed in July 16. I know what you mean by wishing to meet someone who understands. There may be many like us out there........

  • Hmmm...I was thinking that the care givers could get together, have fabulous affairs and then go home to apathetic Parkie's who couldn't care less. I just don't want to have an affair with someone who would have an affair, if that makes sense? My Parkie is completely impotent at 50 and couldn't care less that he is...otherwise doing pretty good...so lack of intimacy, attention, etc. is simply my problem to deal with. Nice! I thought I would go to a support group to connect with a care giver in the same boat...

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