Good afternoon MS hive, just wondering if anyone has any handy tips for me? Have I missed anything vital?
Diagnosed Nov 20 aged 51 and confirmed as PPMS July 22. Started Ocrevus in Nov 22. Medical retirement from teaching Sept 2022 due to MS.
We are about to set off for four months travelling through SE Asia- always a long term plan but in light of MS bringing it forward.
Things we have put in place-
Time- building in rest days and an fairly open schedule
Fully vaccinated up!
Going at the cooler time of year (as cool as it gets there!)
Advice sought and actioned on correct kit.
Three months worth of prescriptions collected
Not going too far from the beaten track- regular stops in main cities.
MS nurses aware
Looking forward to any hints and tips…
Staying positive with a can do attitude!
Thanks in advance
First thing that springs to mind is the heat & humidity. I was wiped out in the British summer and resorted to ice packs on the head to cool down my brain. I wouldn’t contemplate such a trip (60, PPMS for 6-8 yrs). How are you in the heat?
Thanks for your reply-
With management I’m not too bad in the heat (yet)- we’ve planned the schedule to hit most countries at their coolest/ lowest humidity on purpose. Also all accommodation has A/C and some a pool. Big sun hat, plenty of water etc, and room in schedule for down days as and when needed.
Have taken the attitude if I don’t do it now it potentially will only get harder to do a trip like this.
The heat and humidity would knock me flat, but I’m me and you’re you.
I am completely with you on the importance of seizing the day and getting on with it, and good for you. I wish you a wonderful trip.
Good luck and enjoy it. As I am RR I have decided against long haul travel as I would not fancy dealing with a major relapse impacting my mobility while abroad. To an extent it is the unpredictability of being semi mobile normally and using a rollator as my aid of choice. Having been to India China and Sri Lanka in the past I know (at least away from the major cities) I would not fancy them now. Do it while you can!
Good call on the timing. Planning is key these days. Enjoy!
We’ll expect an update on such a major undertaking
You seem to have planned well and it will be a once in a lifetime opportunity. I am envious have a wonderful trip!
Maybe letter from doc itemising and accounting for the medications.