Mamoth

Well sorry to hear about your troubles but I have been on the wedge pillow for over a month but before that I could not sleep on my side be cause I could not move my legs and it would be very uncomfortable. Now last night I did not sleep at all for the 1st time my left leg was in pain below the knee all night and come to find out this morning my foot had slipped off the pillows and was hanging. Never done that before. I need to hang in the water at a beach somewhere in Mexico

I was having problems sleeping a while back and a lot of times in the middle of the night I would beg my wife Maria to pull me out of bed and I would try sleeping in my Electric wheelchair. It reclines pretty good. Untill 1 night when I woke up and was having real problems breathing and it scared me. I called 911 and the ambulance came to my house and they hooked me up to a mchine to check my heart and also checked my Lungs and said they were fine. Well they took me to the emergencie room for further evaluation and said it was an Anxiety attack and fed me breakfast then sent me home. I followed up with my Dr. and he said I had Cojestive Heart Failure, Well I saw aa Cardiologist and he said my heart was fine.

I think your family is so beautiful, Rentius. I'm glad you've added the family album!

I found a conversion chart--looks like 81 centimeters would be a good "minimum" doorway. I have found that if the door can swing back 180 degrees, it is also easier. But 90 degrees is hard, and with a doorstop impossible for me--although my husband can use controls in the back of the chair and slowly get me through. There are threads on doorways, ramps, bathrooms you can find through the white "search" on the blue bar (see above). We waited too long to modify our house and moved next door to a more open plan--my inlaws' house.

We're acquainted with a family who just left Algeria. He helped with irrigation and problem solving, but they were with Wycliffe. That is such an unsettled part of the world right now.

(2)
Back to a house, I assume you'll need a hoyer type lift later, which means no bathtub. You want to roll into the shower area if possible.

Would there be public transportation you can use with a power chair?

I think your wife's inability to find peace at this point is very understandable. Your lives have been turned upside down. It would be good if she would join the forum as your caregiver--there are several younger women here. However, if not, whatever feeds her spiritually is good. I played hymns and sang along with them the first year a lot. Are you familiar with Andrew Murray? He's an old writer from your country, and his books are written in a very comforting, gentle way. She might find them helpful. We all, I think, come out of a society where suffering and loss seem foreign. It's difficult to change that thinking, accepting it first, and even hopefully finding that it draws us closer to the Lord as He solves all the details of our needs.

Ann

Rentius, you did just great. If you want to follow a conversation, click on "view conversation" under my post, and then the messages with me will be all together.

Most people like to use a van with a powerchair--a minivan or SUV is most often used, with a ramp installed along with a dropped floor. This is expensive if new, but there are normally lots of used converted vans for sale. You really will need a big power wheelchair, with tilt, elevated legs and reclining back. We live in these chairs, Rentius, and can develop pressure sores if the chair isn't the right size and doesn't have a good cushion. A sedan would supply room only for a collapsible manual chair.

I can tell you that the doorways in a house should be bigger than 30 inches wide. I don't know metric, but as close as 36 inches would be the best width, and with nothing blocking a turn while going through a doorway. Try to get a bedroom and bathroom on the main floor, and if you are able, a shower room is best.

Hello Rentius. How are you doing. I also have leg problems and had breathing problems when I slept flat on my back. No more breathing or sleeping problems since I got a Wedge pillow that keeps my upper body propped up 12 inches. I hope everything is well down there in South Africa.

Good morning Rentius, it was so nice to get your message. Keep posting your thoughts. We can all learn from each others questions. Is there an ALS CLinic nearby where you live? I find my clinic to be a real God send, because the doctors there know ALS and I do not have to explain much before they get it and give me the help I need. Hope you have a good day! See you around the forum!

Hi Rentius,

I agree with Sequoia, your English is perfectly fine. I am a Christian and am praying for you and for your family. I'm glad that you are sticking around and hope you make some good friends here. Under the area for caregivers (called "CALS") you'll find some threads which speak of children.
Ann

Welcome Manoth, to the Forum! By the way your English is perfect. Just wanted to drop by and say hello. I remember my first post and how nervous i was, so I wanted you to get your first visitor message right away. God bless!