Travelling with Parkinson’s : It’s only... - Cure Parkinson's

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Travelling with Parkinson’s

jeeves19 profile image

It’s only relatively recently that I’ve discovered what a challenge it is travelling with Parkinson’s! Much of this orients itself around urinary issues. I need to drink quite a lot of water to make the meds work which then sets you up for urgency ☹️. Such a pain when you’re on a plane and they say ‘we’ve started our descent so the toilets can’t be used now’, or you then find yourself on a bus only to be told that the time to your hotel will be 2 hours.😫. And that’s not counting the off times when you struggle to take your coat off/put on or fumble through your pockets for your passport/ boarding passes. Next year it’s a cottage in Cornwall where I don’t have to meet anybody and can drive myself there! 😎

38 Replies

Have you not heard of Eye Guide MC?If not visit eyeguidemc.co.uk PLEASE

Dap1948 profile image
Dap1948 in reply to JanetNo1

Do you use it? In what way would it have helped Jeeves19?

JanetNo1 profile image
JanetNo1 in reply to Dap1948

I should have told you that Sandra is now able to again ride pillion on a Gold Wing & drive her Jag with the aid of Eyeguidemc. From Mary Wilson

Fed1000 profile image
Fed1000 in reply to JanetNo1

I visited the site and sent an email for more information. The device seems miraculous and for this I believe little, however, always better to know. Did you buy it?

JanetNo1 profile image
JanetNo1 in reply to Fed1000

I do not have Parkinsons. Sandra who developed Eyeguidemc is my friendand has severe Parkinsons. The best I can tell you is that I am 86 years old(lots older than Sandra) and that I believe Eyeguide to be one of the greatest miracles of my years. I do wish you well. Mary Wilson

Fed1000 profile image
Fed1000 in reply to JanetNo1

I hope it is as you say. I love you too

Nitro53 profile image
Nitro53 in reply to JanetNo1

You didn’t answer Dap1948 question

JanetNo1 profile image
JanetNo1 in reply to Nitro53

I think I did reply but I am not sure if I did it right. I am 86 years young & got caught up in this & am not sure what I am doing so I do hope you get this....anyway....I do not have Parkinsons but my friend Sandra who developed Eyeguide does. Please look at eyeguidemc.co.uk or there are articles in Womens Weekly dtd 22/02/22 & Lincolnshire Life dtd 12/21.Someone else has been in touch & they have contacted Eyeguide & they

say it is like a miracle. I believe it is one of the greatest i have seen in my 86 years. If you get this WHICH I HOPE YOU DO! I wish you well

If you are needing to drink a lot just to get pills down, I find something thick and viscous does that job more efficiently, meaning it requires less liquid. Something thick like kefir yogurt drink.

I can understand. I reduce my mother's water intake by almost 50% starting at about 12 hours prior to when I have to take her to visit the doctor (even if the dentist who is only 5 min. away or her PCP who is 15 min. away, while making sure that she does not get any water a couple of hours before leaving the house). In addition, also try to make her pee before going. (always carrying a pair of diapers, a mug and a spare set of clothes in case of accidents - and yes, it has happened; Had to clean her up- change her diaper and clothes once in the doctor's office - I am talking of # 1 and #2 as a total package).

Thanks John. 😊

You still have to make it to the next service station. Except here in France where every hedgerow is a gentleman's convenience

🥱 If only I could persuade the driver to stop.

Good cal don't think I've got the patience

Have a great holiday and try not to think about the return journey. For next year, Scotland is a lovely holiday destination!

jeeves19 profile image
jeeves19 in reply to Dap1948

Is that an invitation Dr B? 😊

Dap1948 profile image
Dap1948 in reply to jeeves19

Of course, guest room sleeps two!

Until recently constipation was the symptom which had the biggest effect on my QOL. But now, I've got that mainly under control (enema) another problem raises to the top: urge incontinence. I find that I'm especially bad about 30 minutes after taking my first levodopa of the day. It's almost like a switch: one second I have no need to go; the next, I want to pee desperately. And, as the plasma concentration increases, I might need to pee two or three times in short succession. If I'm at home this is not a problem. But, if I'm travelling this is exactly the worst time: public toilets are rare in many areas of the UK, and are often locked. I am much better in the afternoon and evenings.

jeeves19 profile image
jeeves19 in reply to johntPM

Same here John ☹️

Jeeves19 I can completely relate, as I travel quite a bit for work. Making sure I have the gazillion suppliments I have to take while im away, keeping my daily probiotics cool, packing and unpacking my APAP, and of course finding a bathroom when needed! Hang tough, make adjustments if you can, and just take it day by day...🙂

jeeves19 profile image
jeeves19 in reply to SAGoodman

Thanks buddy 🙏

Good day, Adam, I sure can empathize with you, because I seem to have that annoying problem too!! Traveling is not as much fun for me, as it used to be, so we don’t travel much, anymore. Your idea of a cottage in Cornwall sounds inviting and awesome, for you, next year! In regards to your post, about stretching/exercising. I, also, took the time to stretch and exercise all limbs, neck etc., with repetitions, recently, only to find out the next day, my muscles ached and were stiff. This kind of stiffness, I believe, is because of the cogwheel rigidity, that I have now, in all 4 limbs, and neck. It is NOT the kind of stiffness that I used to get, when I would lift weights, and do warm up reps, and cool downs, athletically wise, a number of years ago. ( I used to work out in a gym, regularly, with a trainer. Additionally, I took training courses to train others, and was employed, at World Gym, over 25 years ago. So, I know the difference! Anyway, now I do regular exercises, as specified, by my local Parkinson’s Society, in the form of 🖐 outs. These are primarily easy, simple exercises. Vitamin supplementation, and walking regularly, often with a cane, and my dog, keep me going most of the time. I have found with Parkinson’s that sometimes I have to deal with painful episodes, like when I get foot cramps, and start to fall. I have curled toes, on both my feet now, which does not help, so walking is not easy for me to do. My Doc always tells me to keep moving, so I do the best I can, even though I probably look awkward to others when I walk. I sure can relate to your frustrations of dealing with this challenging disease! Take care! Doug

jeeves19 profile image
jeeves19 in reply to ddmagee1

Thanks as always Doug for your generosity of time and spirit. It’s a real drag isn’t it this disease? I guess we have little choice other than to keep on battling but at times one wonders if it’s all worth it. I have a firm belief in a God but somehow look forward to the day when I meet him and am able to ask the question: ‘you know that Parkinson’s thing? What was I meant to have learnt from having that?’ 🤔😫

ddmagee1 profile image
ddmagee1 in reply to jeeves19

I feel the same way, at times, Adam; however, we must not give in to the Parkinson’s challenges, and allow ourselves to be defeated. Life is a precious gift, and realizing that, we need to find joy, happiness, and personal fulfillment, in spite of having Parkinson’s! I refuse to let Parkinson’s ruin all my finding happiness in my life. COVID-19 has deeply affected my life, from the aspect of isolation, and preventing me from getting out and enjoying life, and family time, and friends. I have not been able to get the occasional help, that I used to get, that I need, occasionally, because of COVID restrictions. All of my wife’s Doctor’s have said, since the beginning of the pandemic, that we must isolate, and do everything, we can, to protect her, because of her heart failure/ breathing problems, diabetes, and poor health, because, if she ever contracts COVID, more than likely, it would kill her! It feel like she has a gun to her head. Add the world situation at the time, where the threat of a WWIII, is imminent, and, I must admit, that staying positive, unafraid of the future, and fighting Parkinson’s and Cerebellar Ataxia symptoms, for me, is difficult! May God be with us, and keep us strong, would be my prayer! Good luck to you, and your family, Adam, during these difficult times! Thanks for your wonderful support, as a fellow “Parkie”! I truly value your friendship! Stay safe! Doug

Not sure if you've tried Myrbetriq. Works well for urgency and the only OAB med recommended for Parkinson's

Despe profile image
Despe in reply to keri10

Are you on this medication? Thank you.

keri10 profile image
keri10 in reply to Despe

My mother (who has parkinson's) does.

Despe profile image
Despe in reply to keri10

Thanks! How is it different from other meds (terazosin).

keri10 profile image
keri10 in reply to Despe

Terazosin is for enlarged prostates. This relaxes the muscles around the bladder so that it is easier to pee. The Myrbetriq is for overactive bladder OAB. A lot of OAB medicines can increase issues with memory loss but not Myrbetriq.

Despe profile image
Despe in reply to keri10

Thanks!

Hello! I can relate; don’t worry! We shall overcome.. one day (:

jeeves19 profile image
jeeves19 in reply to Divii

I wish I had your confidence. 🤔

I found B1 stopped my urgency needs. When i travel i hv wheelchair assistance. Its fab- no walking long distances with idiot people walking in front n no passport queues as go out with pilot n i find they help passport etc. I recommend it i hv always found stafff friendly n treat me as a person with respect.

Nice one ☝️

Have you considered looking into PTNS on the NHS? Electrode in the ankle for 30mins once a week for 12weeks and some evidence that helps reduce urgency issues for PWP.

stgeorges.nhs.uk/wp-content...

Have you tried a condom catheter? Great for travel and adds safety by keeping you out of bathrooms so often. Works really well for hubby.

About 8 months ago @MerckK started a thread titled "Lost control of urine". A number of responders said that their urinary urgency was solved by high doses of Vitamin B1.

healthunlocked.com/cure-par...

A forum member mentioned that her husband had a prostate laser surgery with success. I searched it and found that there are different types of laser surgeries:

TURP, THULLIUM, HOLMIUM, GREEN LIGHT THERAPY (Best), BUTTON TUPR, AND TUIP.

I will look into Green Light Therapy. I am sure they provide them in the UK as well.

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