kukukajoo

So sorry to hear of the progression. I will hope it slows down some.

Netflix is a great idea for sure. Not only do they come to your mailbox, but you can also rent unlimited movies to view online, which I tend to do in spurts. Easy to watch and I can take the laptop right in bed. I just wish i had a larger screen!

There are lots of books on tape available now as well, which he might enjoy. I know many libraries have a program where you can also rent them online and listen on the pc or transfer to tape or a MP3 player that is compatible. Our local library lets you take 3 out a week. I think the website is overdrive.com If he is interested, and this is not available, I would be more than willing to let you have access through my card.

I will try to think of other hobbies and things he may be able to do.....

baglady

Thank you for all of your excellent suggestions. I TRULY appreciate it!

kukukajoo

Baglady, you are the one doing all the great work, and you inspire me. I wish when my mom had ALS there were more ppl around like you.....

baglady

Your quote brought me to tears. I'm sorry there weren't more people there for your mom. It's a horrible disease and it affects people in a way I just can't imagine.

b1513

My neighbor across the street died from ALS. It is a terrible disease. You are a very caring friend. I wish you the best in attempting to make his life more comfortable.

Bobette

kukukajoo

She died as it was beginning to take hold of her. She was diagnosed with a rare thyroid cancer and passed three weeks later. Honestly it was a blessing for her that it took her so quick although nobody thought so at the time. Been 16 years and I think of her every day still.

She had family, but people tend to hide from things they have trouble facing themselves......

Shesells

Baglady I am sorry that your friend's illness has progressed so fast since your first post. He is lucky to have a friend like you. I second the idea of audiobooks, saves the frustration of page turning.

I love the idea of giving his wife a break, and a treat. Caring is so difficult as you put your own life on hold.

Kukujoo I am sorry to hear of your Mom's case. But glad she went so fast.

We have had 6 cases in one generation of our family, lasting 15 months-5 years from diagnosis. It's a horrible shadow to live under. The next generation are watching closely, and in fear that they are next.

CDTraveler

One of my aunts had ALS and came to visit us not too long before her death. Some of the things that I remember were helpful to her were a variety of straws (thin/thick depending on what she used them for), and plate with a suction cup on the bottom so it didn't move when she tried to get her food, and special silverware with either loop handles or curved handles to make it easier for her to hold and control - she insisted on doing everything she could for herself as long as possible.

I think the silverware came from a catalog (this was waaaay before the 'net) but I'm sure you could find it online now. Gerber makes plates and bowls with suction cups on the bottom for kids which are readily available, and if you have bobba shops in your area, they might sell or give you some of the jumbo sized straws (she used those for thicken liquids - thick was easier for her to swallow).

baglady

Thank you so much for this valuable advise - I really appreciate it.

Looney

We want to have our son travel home for a few weeks. He has some very valid concerns. Unable to move at all, lifting him onto an airline seat with his ventilator. He is dead weight. The other valid concern is his very expensive w/c and if it was damaged would be a disaster as his chair is fitted just for him. Anybody out there had experience traveling with a ventilator?? Sure would welcome advice.

JDiver

I think this would require close coordination with caregivers and with the airline one is considering; most will have a contact point for passengers with special needs.

I think it's difficult to comment much because we have no data: distance? Trave time and modes? Etc.

Grendel666

I am planning a trip and getting tickets to Costa Rica to go with my best friend, who was definitely diagnosed with Bulbar ALS about a month ago. She may or may not be able to make the trip about 4 months from now, when I can go. My question: if I buy travel insurance and she can't go, which her doctor can officially confirm, will the insurance company honor the claim or will they say, oh you knew you had this condition so that doesn't count according to the vague terms of our contact, which basically give us leeway to deny most all claims unless you've literally broken your neck in an auto accident and where is your evidence that it was an "accident"? (Sorry, I'm already anticipating their disposition). Thanks very much if anybody knows!!!

CDTraveler

I'd say there's a 99% chance the claim would be disallowed as a pre-existing condition. Basically any diagnosis made before the date of purchase qualifies as pre-existing.

koko78

I hope your friend will be able to flight. 2 years ago my wife had a FVC of 48 % and she was able to flight from Buenos Aires to New York City and back , which is a 10 hour flight, without any issues. We brought the BiPaP with us but didn`t use it at any time (neither in the flight nor during our stay).
Hope this helps.
Saludos
Lucas

vw-fl

Try calling Travel Guard before you make any reservations. We have used them several times for our pre-existing medical condition insurance. You may find another travel insurance company that is cheaper so you'll have to do your homework. Sorry about your friends diagnosis and I hope you will both be able to enjoy your trip. Hugs.