Thanks...but I'm still sinking...

[John3419]

Many thanks to everyone who gave me advice when I posed the question "What is the truth about medications?" However, I'm caught in the pd trap along with all other sufferers...as I twitch and jerk about I read that I should try to reduce my Stalevo and/or RequipXL but without these I cant move...I used to be a great believer in exercise (I'll walk 30 mins on the treadmill this afternoon -I'd walk 60 mins every day if I thought it made any difference).

I think the truth is that here in UK we're strapped for cash .. I have never seen a PARKINSONS specialist in the 10 years I've had the disease - neurologists, yes, ..even ms or motor neuron specialists but not someone who specialises in Parkinsons. Thus I always get a reaction to worsening symptoms rather than an action plan. I'm not easily defeated (refused all drugs for the first 3 years) but I'm not going on too much longer...reacting has got me where I am on 5 x Stalevo 125, 1 x Requip XL 16 mg 1x Clonazepam 0.5 mg

and dont forget 1x7.5 Zopiclone so I can get 3 hours sleep per night.

If I'm offered DBS I'll probably take it.....at least for a very short period I MAY get to meet someone who is a PD specialist. Yippee!

Enough grousing..really sincere thanks to those kind enough to reply to my last posting..you're all heroes...

[Hidden]

Ultrasound surgery for PwP

insightec.com/Parkinson_Dis...

healthsystem.virginia.edu/f...

on.ted.com/a01aj

ted.com/talks/yoav_medan_ul...

[PatV]

the truth is that the only meds for PD treat the symptoms, not the disease, and after a while have their own nasty side effects. the truth is that the only thing proven to be neuroprotective in many clinical trials is exercise. So keep moving no matter what. Good luck!

[ssnowhite]

John- I live in the US-my neurologist works for the Parkinson's foundation-BIG NEWS-they all have pretty much the same "bag of options" to offer. I was formally diagnosed 10 years ago. First 7 was on one set of meds that worked well, THEN all went to hell; we are still tinkering with combinations to provide relief/allow sleep. I have NEVER seen a movement speciliast. In the meantime, "charge on and find ways to adapt"- find a passion and focus on it. If you enjoy walking- DO IT-no excuses. Do you find yourself sleepy at 1 pm after lunch?... NAP then to make up some sleep-if you awake in 1 hr. refreshed-mission accomplished. IF awake at 2am, think why did you wake (i get rigid and have to wake to move)? Hungry (eat a banana as it helps sleep), Stiff-maybe soak in a hot bath with lavender or sent you find relaxing; or mop floors (my 2am hobby). My :"must beat this" passion is my horses; regardless of how I "move and shake" or how slow, stalls are cleaned, they are cared for and ridden-my "boys" have adjusted to me, and I ride 5-7 days a week, maybe only 5 miles-BUT I do it. I also walk, ride a bike, do a bit of yoga, light weights, paddle board when water allows- FIRMLY beleve you must do as many different physical things as you can-my workout may be a bit modified-BUT I do it. UTUBE has ENDLESS videos on all types of physical activities- watch a few, modify for your limits-far more interesting than just one routine...also good when weather is not good for outside. Go on-line and find FREE mind games/challenges -

YOU ARE worth the time and effort and it DOES pay. ALSO-this helped option helped both DR and me- Actually keep a REAL and HONEST log for just 4 days ...time are you dosing, when/what are you eating before/after the dose? How long after dose does your " rattle and roll" begin (if you have ability, film yourself), how long does it last. If you suffer a "drop off," when and how long before your next dose does it occur. If you use alcolol, note time, type and how much. When do you exercise-how long, type of exercise. IT is a MUST that you be honest with the log. If, you see a pattern forming, you may see patterns you yourself could amend and again do a log for results.... Take your log/s and any videos on your next visit to practioner- I have been doing this with my DR and we both find it helpful. I only see him 4 times a year, so my email logs and videos have improved the overall situation. He sees the issue, has my notes and calls to discuss-we have made helpful modifications to my treatment

NOTE-IF, in the US,and you live in a state with legalized marijuana, you can likely find some relief to the dyskensia/distonia. I used it for my worst issue --ability to sleep (piece of "fortified brownie" one hour after my last senimet for the day) I DID NOT get high, however, it allowed me to rest/sleep; greatly reduced rigidity, could roll over/change sleeping position more naturally, wake up less. If I wake to go to bath room am able to go BACK to sleep...

[quirkyme]

we all have days when we feel we're sinking, esp. when a bunch of things are going haywire at once. Tackle them as best you can and keep moving forward. Get on an antidepressant if need be. It's working for my husband. There's good advice here. Keep up on your exercise. Tell your doctor about your diskinesia

...hang in there. You are not alone in this.

[FMundo]

Every day I express gratitude to what ever powers there are "up there" that I live in the U.S. and am a citizen... and that I DON'T have to put up with what you folks do with the medical system in the U.K. Our system might be inordinately expensive to our citizens and government, but what passes for medical care in the the U.K . is, IMHO, appalling.... "never seen a PARKINSONS specialist in the 10 years I've had the disease...." ?????? Unacceptable!. Someone should be strung up by a tender part of their anatomy...... You Brits need to come out of the dark ages!

[Hikoi]

FMundo

Have you been to Britain? I don't live there but I did for a number of years and I don't recognise that description ☺️

John

Do you see a movement disorder specialist? I don't know of any exclusively Parkinson specialist, they are movement disorder neuros?

Im interested to hear about your idea of an action plan, I've never come across one being used for PD.

Hang in there John. Do you go to any support groups? Get some help from your PD nurse if you can.