When to start medication?


#1

I have recently been diagnosed and while I am still waiting on a few more test results, I am certain that they have the diagnosis right.
I decided to take the wife on a Baltic cruise with a bit of Paris afterwards next May. We did the cruise a few years ago and wanted to do it again. Just not so soon. I/we decided that we had better do while I can.

At the moment the only obvious signs are a tremor and some slurring of words.
I also feel like I am walking with a limp and the left arm is ‘sluggish’ which make eating a bit slow.

I know the rate of progression is difficult to estimate but I ‘think’ I will still be OK to play tourist in 12 months time.

Do I stay away from meds until after the trip or start now and hope that there are no side-effects to upset my plans?

Being from Australia, we will be a long way from home if things go wrong.
I hate the 30 hours travel time when fully healthy!

Travel insurance is also easier to get if you haven’t been changing meds over the preceding 6 months.

Jim


#2

Hi Jim

I was diagnosed a year ago with similar symptoms to yours and was initially very wary about booking holidays much in advance. I was started on 1mg rasagiline immediately and didn’t have any side effects. One year on I’m much the same as before and enjoyed a lengthy trip to South America in spring.

Also, like you we’ve decided to go to the places we want to see sooner rather than later so we’ve got three more long haul trips planned - one not till autumn 2019!

My son lives in South Korea so I’m hoping I’ll continue to be able to travel - and I’d love to incorporate a trip to Australia into a visit with him next year or the year after as well.

I didn’t have any problem getting travel insurance either - I used an online comparison site which allows you to answer questions about your symptoms.

All the best

Clare


#3

Hi Jim, nice to see you back on the forum.
I can only relate to the medication as it affected me, I was so fed up with living in the slow lane, I could not wait to start. I was first given Co beneldopa 25/100, building up slowly to 3 a day. They tend to take a while to work but my tremors went within the first month and whilst I have had a few minor side affects, they do not out-way the good.
As you say whats next is unknown and if your symptoms remain as they are and controlled, then all`s well and good.
One step at a time Jim.
I hope that helps.
Best Wishes

Mal


#4

Thanks for the replies.
The holiday is definitely on. Once I told the wife, there will be no going back on the plans.
I will have to decide about the meds soon when I see my GP next week. He should have all the neurologist reports by then.

Jim


#5

Well it’s definite.
Today I booked the cruise and the air tickets so there is no pulling out now.
Only 286 days to go!
I have decided to stay free of the meds for now but will discuss it with the neurologist in October when I see her next.
The MRI didn’t show anything abnormal so Parkinsosn’s is still the most likely. My GP isn’t convinced.

Jim


#6

Nice one Jim,
My wife, Shirley and I love cruising and have cruised the Baltic from Southampton.
Where do you start from this time?
It’s a good call to include Paris while you can still “play tourist”.
Best Wishes and Calm Seas

Mal.


#7

We leave from Copenhagen on 21st May.
We liked Copenhagen and are having a few days there before and after.
The biggest risk is the cyclists. They really move!
I’ll be there for the Copenhagen marathon but I think I will give it a miss again.

It’s almost an exact copy of last time except they have changed the order of the ports so a few different times ashore.
At all ports, we can go ashore at our own time and walk to the sights we want to see. That way we avoid the biggest crowds.
Everyone stumbles over the cobbles so I wont look out of place.

Jim