Newbie

Hi, I’m new to ALD as my son has recently been diagnosed. He’s 8. We’re thinking of taking him on a dream holiday, so if there are any experiences of traveling, particularly on long flights, I’d appreciate it. Thanks

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Hey Newbie, welcome to the fold although I’m sure in the ideal world we all envision this is the last place you’d choose to be. It can be a confusing and frightening reality to come to terms with. My nephew, who’s 10, has recently been diagnosed and is the next generation to be carrying the torch and I think and worry, mostly worry, about the life he will have and what has been taken from him. I was diagnosed much later in life and had the privilege of a relatively normal life along with normal milestones in terms of education and a meaningful sometimes rewarding career for which I’m extremely grateful. I extend my thoughts and worries to your son as well and yourself as well for the journey thats been thrust upon you all.

In response to your question about long distance traveling, I’m thinking it really depends on the symptoms your son is experiencing presently. A few years ago I accompanied my partner on a flight home that was so many time zones ahead it boggles the mind. My doctor saw no reason not to travel. Spasticity and bladder control have been my progressive reality, not to mention the challenges of long term sitting in cramped quarters. But I managed the journey quite well in my opinion, getting up and walking/stretching when I needed along with making use of the nearby ever so spacious washroom facilities. However it called upon most all of my mental resources to keep my shit together and not cause an international incident. It was even more challenging because the wine and spirits offering on the foreign airline we flew with was depressingly spartan, I mean really is China known for their exceptional wine making prowess? I’m relieved you don’t have to witness the eye rolling that accompanied that comment and I’m sure Chinese wine is quite good and gentle on the palate although I wasn’t brave enough to actually try it.

That being said, your son is 8, with the energy and curiosity that comes along. Not knowing how or in what way he’s currently impacted really limits commenting further. My suggestion is get a full picture of your son on a long flight, what issues or challenges he may experience and how you would address them address them with as much variety and creativity as possible, involving him in the planning and preparation and book the tickets. Life is short and the last thing any of us want to be left with is regrets. Dream big, genetics may impact us but we are still in the drivers seat and need to focus on our abilities and the choices we still possess. Right, now I may begin my quest to sample Chinese wine. Or perhaps not. My thoughts and kindest, warmest regards are with you and your family.

Reply

Hey Newbie, welcome to the fold although I’m sure in the ideal world we all envision this is the last place you’d choose to be. It can be a confusing and frightening reality to come to terms with. My nephew, who’s 10, has recently been diagnosed and is the next generation to be carrying the torch and I think and worry, mostly worry, about the life he will have and what has been taken from him. I was diagnosed much later in life and had the privilege of a relatively normal life along with normal milestones in terms of education and a meaningful sometimes rewarding career for which I’m extremely grateful. I extend my thoughts and worries to your son as well and yourself as well for the journey thats been thrust upon you all.

In response to your question about long distance traveling, I’m thinking it really depends on the symptoms your son is experiencing presently. A few years ago I accompanied my partner on a flight home that was so many time zones ahead it boggles the mind. My doctor saw no reason not to travel. Spasticity and bladder control have been my progressive reality, not to mention the challenges of long term sitting in cramped quarters. But I managed the journey quite well in my opinion, getting up and walking/stretching when I needed along with making use of the nearby ever so spacious washroom facilities. However it called upon most all of my mental resources to keep my shit together and not cause an international incident. It was even more challenging because the wine and spirits offering on the foreign airline we flew with was depressingly spartan, I mean really is China known for their exceptional wine making prowess? I’m relieved you don’t have to witness the eye rolling that accompanied that comment and I’m sure Chinese wine is quite good and gentle on the palate although I wasn’t brave enough to actually try it.

That being said, your son is 8, with the energy and curiosity that comes along. Not knowing how or in what way he’s currently impacted really limits commenting further. My suggestion is get a full picture of your son on a long flight, what issues or challenges he may experience and how you would address them address them with as much variety and creativity as possible, involving him in the planning and preparation and book the tickets. Life is short and the last thing any of us want to be left with is regrets. Dream big, genetics may impact us but we are still in the drivers seat and need to focus on our abilities and the choices we still possess. Right, now I may begin my quest to sample Chinese wine. Or perhaps not. My thoughts and kindest, warmest regards are with you and your family.

Reply