Calling all PALS! ( PALS only please, thank you)

[chally]

Well my pulmonary testing went good I think ,however my FVC went from 96 down to 84. They did the test for co2 by taking blood from an artery in my wrist and nurse said co2 was good. So a little drop in # on FVC. Had an adventurous trip w/ friends into a wilderness area in WV they caught tons of trout and I enjoyed watching. Resting up now! Got to stop trying to move about without braces even with rollators. Love ya all chally

 

[mbmurray]

I haven't been to this forum in a year and a half

1-1-15 I went to the ER because I had trouble breathing, 70% of my lungs were clogged, I had to make a decision I wasn't planning to make for a while. I got a feeding tube and a trach. At 45 and with two young kids, I wasn't ready to die.

Life has been tough since then, paralyzed from neck down, but using Dynavox to get online, and get to see my kids every day

 

[Nikki J]

Please stay safe Chally!

Mb welcome back! You have been missed! I am very sorry for all you have been through but glad you are here . Please come and hang out with us when you can!

 

[GregK]

Mb, if you find the time and energy would you share your trach experience? From operation thru recovery and on to current...

 

[KimT]

mb, The power of love makes us to great things! Can you share more of your experience with the trach and PEG?

Chally, Be careful.....but keep enjoying each day!!!!!

 

[chally]

Feeling the LOVE! Thank ya all, welcome back mb "NO WHITE FLAG" keep on keeping on bro. Love ya chally

 

[Grace89]

I have been nonstop lately. I gave my notice at work 2 weeks ago, that was harder to do than I thought it would be. I spent last week in DC. That trip was eye opening and exhausting. I met so many people and I left feeling like we made our voices heard on capitol hill. I flew in and went straight to a Drs appt for consult for my feeding tube. I have a CT this week so the Dr can look at everything and make a plan.
I sold my car Friday, so now I'm on the hunt for a van. I've looked at so many online that I don't even know whats best or needed. It is overwhelming. I'm going tomorrow to rent a car until I can find something. My car sold faster than I thought it would but I didn't want to miss the sale so I went ahead.
I've had a few people come look at my house to see what is needed to remodel. Looks like enclosing my garage and adding a bathroom is going to be the easiest. I can't even go there right now. I've got to get the van then will start on this.
My girls get out of school for the summer this week. I really want to hit the road and take them places, but I'm so afraid of doing it alone. They keep asking to go to disney world and I think there is no way I can handle the Florida heat but then I worry how I will feel this fall. Hopefully I can plan a few trips and make some memories.

 

[Nikki J]

Hi Grace glad you have a plan for the house and a van is in the works. Could one of your family make trips with you? It is of course so important for all of you to make some special memories this summer. We did Disney the first summer of my sister's diagnosis but there were 2 well adults there and Disney still allowed disabled people to skip the lines then. If Disney is not possible then do something special-you are right this summer will be the best time

 

[swalker]

Brief reply, cause I have trouble typing on cell with thumbs. We are in Yellowstone having a great time. Have tried to post pics from cell but failed. Will do so when I get to a computer with Internet connection.

Steve

 

[KimT]

I have been nonstop lately. I gave my notice at work 2 weeks ago, that was harder to do than I thought it would be. I spent last week in DC. That trip was eye opening and exhausting. I met so many people and I left feeling like we made our voices heard on capitol hill. I flew in and went straight to a Drs appt for consult for my feeding tube. I have a CT this week so the Dr can look at everything and make a plan.
I sold my car Friday, so now I'm on the hunt for a van. I've looked at so many online that I don't even know whats best or needed. It is overwhelming. I'm going tomorrow to rent a car until I can find something. My car sold faster than I thought it would but I didn't want to miss the sale so I went ahead.
I've had a few people come look at my house to see what is needed to remodel. Looks like enclosing my garage and adding a bathroom is going to be the easiest. I can't even go there right now. I've got to get the van then will start on this.
My girls get out of school for the summer this week. I really want to hit the road and take them places, but I'm so afraid of doing it alone. They keep asking to go to disney world and I think there is no way I can handle the Florida heat but then I worry how I will feel this fall. Hopefully I can plan a few trips and make some memories.

Disney has some very cool water parks and awesome hotels designed for kids. The characters roam some of the hotels and some have transportation to and from the various parks. If I didn't have this rotten back pain I'd meet you there and help with your kids.

 

[mbmurray]

Mb, if you find the time and energy would you share your trach experience? From operation thru recovery and on to current...

I don't remember the operation, PEG and trach were done at the same time. I was in the hospital for 3 months, but a lot of that time was due to qualifying for medicaid and setting up home care with nursing

PEG tube is pretty basic, I eat formula but still have a rum and coke from time to time, I miss eating but I will taste stuff all the time

I hated using a bipap, so when I awoke with the trach breathing was so much easier. There is basic trach care everyday, just cleaning around trach. Don't like trach changes, every six months. Vent is trilogy 100 and very quiet. If not for the paralysis the trach wouldn't be so bad

 

[mbmurray]

If you really want detailed information check out the blog my wife maintains which starts when I was diagnosed in 2013 through the time in hospital til today

michaelfightsals.com

 

[KimT]

If you really want detailed information check out the blog my wife maintains which starts when I was diagnosed in 2013 through the time in hospital til today

michaelfightsals.com

Most inspiring blog I've ever read. Your family's faith is so apparent and reading it gave me encouragement. God bless you, Michael.

 

[edschia]

Thank you so much Nikki. I was beginning to wonder where everyone w/ALS was posting. It seemed to be all caregivers or those concerned or scared of a diagnosis. I'm grateful for this forum so all can vent but it's comforting to read of those struggling as I am. I had a good week at the beach as my son, daughter-in-law and their three children visited us and were happy to ride my chairlift since my husband had just installed it. It's a challenge but doable to watch them play as I sit near the dunes. So far I only have leg involvement so I am truly blessed and will enjoy my family each day. I am now back in PA for appts and to see my daughter and her three children here.

 

[KimT]

Oceans of Hope had a Spring Fling event for people with disabilities this past Saturday. I wanted to be there but a PALS from my local support group was able to "surf" despite paralysis in all four limbs. Here is a picture of him and of the group that brought him out.