New here 😄 any yopd out there.? - Cure Parkinson's

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New here 😄 any yopd out there.?

Jgcren profile image
14 Replies

45 and diagnosed 5 yrs ago. Rigidity and bradykinesia mainly. Any one else like me out there?

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Jgcren profile image
Jgcren
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14 Replies
Farooqji profile image
Farooqji

Do you have some job? Are you able to manage?

Jamielee1 profile image
Jamielee1

Hi, 37 and diagnosed 18 months ago. Symptoms since 2013. I'm doing fine. Only effected on left side. My left arm doesn't swing and fine motor skills with left hand are at a minimum. My left foot drags when I'm tired or stressed. Overall I'm good and no one except parents, husband and 2 close friends know.

MGP201 profile image
MGP201 in reply toJamielee1

no improvement in arm swing? what drugs do you take?

Jamielee1 profile image
Jamielee1 in reply toMGP201

No improvement in arm swing. I take Azilect. That is all.

NancyJHP profile image
NancyJHP

I'm 52 and have terrible rigidity. I have a slew of other problems as well. Including, but not limited to, memory issues, confusion, shuffling, turning over in bed, facial expression, apathy, slowness, hallucinations, sudden involuntary movements (sorry, don't know all the technical terms without looking them up), teeth chattering, muscle spasms, cramps, trouble swallowing to the point where I frequently get choked just on saliva, bladder issues, anxiety, depression, fatigue, sleep problems, difficulty with planning and multi-tasking, balance problems, falls, constipation, et cetera. However, I still work full time and manage to take care of things at home. One curse I have is that I look pretty young, young enough to get carded more often than not, so people aren't as inclined to think my issues are due to medical problems.

Jamielee1 profile image
Jamielee1 in reply toNancyJHP

Hi Nancy, how long have you been diagnosed?

NancyJHP profile image
NancyJHP in reply toJamielee1

Just this year, but I've had symptoms for about 3 years, some symptoms longer, which just gradually got worse.

Jgcren profile image
Jgcren

Hi everyone and thanks for the replies!

A little background....

I’m a retired pediatric dentist so I dealt with a lot of unhappy children back in my practice days. First symptoms were weird muscle pains in neck and forearms started at 36-37 around 2009; depression soon followed as running my practice got harder and harder but I didn’t display any classsic PD symptoms until 2012 when tremors started to manifest under stress. DAT scan and mds referral gave a name to my pain.

Sold the office and taught at local dental school until this year when I retired fully. Thankfully I carried LTD insurance.

Last five years haven’t been too bad except for the rapidly expanding medicine cabinet. Currently taking carbo/ levo 8-10 a day and selegiline. Was on agonists for a while but they eventually caused obsessive compulsive issues. The best medicine is surely exercise.

Unfortunately my PD honeymoon is coming to an end. Shrinking on times, insomnia, et al you guys know the drill. Anybody do dbs as a relative youngster?

OTEB profile image
OTEB

Hi Jgcren. I haven't got PD but my Dad has, and I am an occupational therapist specialising in PD. My advice to you would be to exercise as much as possible. Mix it up. High intensity, things that challenge your balance, coordination and ability to dual task. It is so important.

Also consider doing a therapy / exercise program such as LSVT BIG, PD Warrior or Boxing for PD. Google them to find out more.

Best wishes

ProudParkie2017 profile image
ProudParkie2017

Hi! I'm 46 with a brand new diagnosis. Waiting for a 2nd opinion from a movement disorder specialist. Had 2 uncles and a grandfather with it, but being a woman and being young (ish) it caught me off-guard. Bradykinesia in right side (of course I'm right-handed), rigidity, anxiety. Getting divorced and thought perhaps the diagnosis might slow the divorce, but alas, he still wants out. A little afraid of being on my own with this, but determined to prove I can! Have not told kids yet (20, 17, 13). Want my son to get through graduation before dumping this on him. Thankfully, no tremors so easier to hide (and I can fake a great arm swing!)

Other YOPD? Any personality changes (pretty sure the anxiety I am having can be contributed to the PD)? Others without tremor? Will tremor develop? Trying hard to take one day at a time, but that is so not how I am!!

snowynite profile image
snowynite

I am 44 years old and was diagnosed 10 years ago. I just had dbs done and am waiting for them to turn on my stimulator. At five years after my diagnosis I had just stopped working and had to go on diability. Do you have any questions for me?

Farooqji profile image
Farooqji in reply tosnowynite

What are your main symptoms

Jgcren profile image
Jgcren

Hi em and snowy! Thanks for the replies

Emstadler71 I’m sorry you have had to join our club but am happy to meet you.

Snowy what was your disability process/ claim like. Ssdi? What was your surgery tipping point?

I do not respond well to sinemet so DBS is not in my future. A friend of mine had it done in his mid 50s and raves about it.

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