Understanding : I'm new here I thought I... - Cure Parkinson's

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Understanding

30 Replies

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

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30 Replies
enjoysalud profile image
enjoysalud

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

Beckey profile image
Beckey

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?

in reply to Beckey

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.

in reply to Beckey

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.

Beckey profile image
Beckey in reply to

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?

in reply to Beckey

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.

Enidah profile image
Enidah in reply to Beckey

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.

LowCountryJim profile image
LowCountryJim in reply to Beckey

I might have I just don't recall 😁

Beckey profile image
Beckey in reply to LowCountryJim

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

park_bear profile image
park_bear in reply to Beckey

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"

Well I'mnot a ladie sorry

Ok I got ya thanks

Beckey profile image
Beckey

Ha ha! That's funny, Hal.

Alistairs profile image
Alistairs

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!

laglag profile image
laglag in reply to Alistairs

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.

Hikoi profile image
Hikoi

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

Beckey profile image
Beckey in reply to Hikoi

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

Carolinagirl123 profile image
Carolinagirl123

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!

Blackfeather profile image
Blackfeather in reply to Carolinagirl123

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

Carolinagirl123 profile image
Carolinagirl123 in reply to Blackfeather

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

Alistairs profile image
Alistairs in reply to Carolinagirl123

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

Dottie2 profile image
Dottie2

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

in reply to Dottie2

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.

luba1 profile image
luba1 in reply to

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

Pappy214 profile image
Pappy214

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 !

in reply to Pappy214

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.

Tamarisk profile image
Tamarisk

Better the devil you know!!

Beckey profile image
Beckey

Hal, you are too funny!

Jeannial profile image
Jeannial

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........

TheGimba profile image
TheGimba in reply to Jeannial

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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