Kennedy's Disease

[Pookles]

Hello! I'm new to the Disboards, actually this is my first post. That's kind of a bummer, it should have been Disney related. But I just saw this forum and decided that, since I'm on the boards everyday planning our trip, it might be easier to post here than the Kennedy's Disease site I also use.

My husband has Kennedy's Disease. I'm looking to talk with others in the same spot, either they have it themselves or maybe their spouse does. I know there are support groups and such and I do apologize if this isn't the place to connect with others like that...if so let me know! I don't want to break any rules as a newbie!

We are relatively new to the KD world and I'm mainly looking to find out what challenges others faced while in WDW. We're going with 14 of my family for what is a repeat trip for all of them and the first time for me, hubs and our 4 year old son. My hubs' disease is fairly progressed I guess for how young he is (41). Those with experience know this is hard to gauge...there's no one way. It's different for everyone. He uses walking poles when he can for double support and balance. Otherwise a cane if just to make a quick trip. He's getting a walker soon and tho he doesn't have an EVC yet we definitely plan to rent one in Disney.

So...tips, hints, suggestions? For Disney or for our daily lives. If you have anything that might help, I'll take it!

Thanks in advance!

 

[Christine]

Hi there! And welcome. I don't have any info on Kennedy's Disease--I am mainly on the thyroid thread. I just want to let you know that, while this board gets great support, it doesn't get as much traffic as the other boards (such as the Community Board). One reason this board was created was that sometimes the Community Board can get a little "critical" on some threads and people wanted a safe haven to discuss health issues.

Now, since you are concerned with how your husband's condition might be on an exhausting trip to WDW, I would definitely head over to the Disabilities board and see if there is anyone there that has experienced WDW with the same condition. You will get those sorts of answers there.

 

[Pookles]

I will definitely do that, thanks Christine!

 

[EricKDRA]

Hello! I'm new to the Disboards, actually this is my first post. That's kind of a bummer, it should have been Disney related. But I just saw this forum and decided that, since I'm on the boards everyday planning our trip, it might be easier to post here than the Kennedy's Disease site I also use.

My husband has Kennedy's Disease. I'm looking to talk with others in the same spot, either they have it themselves or maybe their spouse does. I know there are support groups and such and I do apologize if this isn't the place to connect with others like that...if so let me know! I don't want to break any rules as a newbie!

We are relatively new to the KD world and I'm mainly looking to find out what challenges others faced while in WDW. We're going with 14 of my family for what is a repeat trip for all of them and the first time for me, hubs and our 4 year old son. My hubs' disease is fairly progressed I guess for how young he is (41). Those with experience know this is hard to gauge...there's no one way. It's different for everyone. He uses walking poles when he can for double support and balance. Otherwise a cane if just to make a quick trip. He's getting a walker soon and tho he doesn't have an EVC yet we definitely plan to rent one in Disney.

So...tips, hints, suggestions? For Disney or for our daily lives. If you have anything that might help, I'll take it!

Thanks in advance!

Hi... I'm Eric and I run a group on Facebook called 'Kennedy's Disease Raising Awareness and a place to share experiences.' Long title but that describes perfectly what we do in the group. We have Three hundred + members consisting of Male patients, Carriers, Spouses, and carers. Please feel free to join us. Best wishes to you and your family.

Eric Mager,
Group Admin

 

[mommasita]

Sorry to be so late, I have never heard of that myself.
It looks like you got some great advice from Christine and Eric