CALS Roll Call Continued

Another Wednesday, another vehicle repair. Yesterday in a parking garage I cut too close on a turn and ran over a curb. I got the van stuck on the curb! I finally got it off, but managed to pull the arm that runs in a track to open and close the driver's side middle door open out of the track. The door wuldn't close right and wouldn't open at all. Happily, the body shop I took it to checked it out, fixed it right away, and charged me $10. The rollers are broken and I have to buy a $90+ part to have replaced, but it'll work until then.

Tillie, I'm so glad you're doing better. As for the anniversary, sweetie, here's to the time you did have with Chris.

Steph--really? Please let us know (and please let it be negative).

Anna, I'm glad that you are traveling while you can.

Matadog, good news on the van!

Aussie, I have the same problem with time. I count myself lucky if I get one thing done (outside of caring for hubby) a day.

Becky

Today is Star Wars Day, May the Fourth be with you.

We've had more visitors and Douglas is still happy. He's continuing to make more progress learning new tools than he is losing functionality. Lately his speech is getting more and more difficult to understand so it's great that he's learning on a loaner Tobii Dynavox while we wait for his to arrive soon. The visitors help with my sanity, too, especially the ones who cook me wonderful meals.

Janis

checking in. I have been reading everyone's posts just been in to much pain to respond. Steph, I hope the tests are negative. You have been through so much and are such an inspiration. Tillie, I hope this week is better for you. I think about you often. Becky, I laugh only because I ran my car completely over a curb last week and messed it up. Three incidents in the past two months. My car is suffering due to my inability to think. Laurie and everyone else thank you for the advice concerning my back. I decided to see a spine specialist today.

The pain is so bad that I am unable to walk. They took xrays and it shows bad damage to the L4 so he wrote prescriptions for steroids, muscle relaxers and pain pills. They are setting me up for a MRI to find out exactly how bad the disk is. Steve is in high spirits but is so worried about me. He feels responsible because he has always protected my back as much as he can by doing everything he can for me.
I think he worries more about me than himself which also upsets me.

I hope everyone has a good week and thank you for all the support.

Hi All, just getting into the swing of things being new here. Just wondering how many CALS have PALS that have lived 5 years or more? I've read through several threads and plan on getting to as many as I can, however I'm struggling. Since we are going into our 10th year since dx and we spent 2.5 years figuring this out, I feel like an outlier. I long ago lost the feeling of wife and now only feel like a nurse. We've been married 31 years and I've spend 1/3 of it caring for him with this disease. I often wonder, if a miracle happened, they found a cure and each of our PALS could be cured, who would I be and what would be left of our relationship. We all face unique challenges with this disease and it would be nice to communicate with someone whoes PAL is also in the more outlier category and how they handle those challenges. Many days I just feel like I'm losing it.

On a good note, we are getting a speech therapist here today, along with someone from Tobii to try and get this eyegaze working well for DH. That would be huge. I'm praying he will start playing with the loaner again once he has some really good instruction. Then if he will actually use it, we will be ordering one of our own. I know it would help our communication and open his world back up again.

Thanks all for listening - Sue

Oh Tillie, the globe must be spinning wrongly in our hemisphere! Time is all disappearing.
Glad to hear you were involved in the walk to d'feet ALS . We really wanted to go to our city one but living too far away now. Once the distance didn't matter, but now with all our equipment & breathing challenges my pals just can't make it. There will be time later I think......
Hope you found time to reflect on your anniversary date? All the beautiful moments....

Good news the therapist was here yesterday and they are going to hook up a switch to the eyegaze that he will use with his chin. He can still open his mouth. They tested the idea with a mouse yesterday. DH was smiling as this actually worked for him and they could not get the eyes to calibrate. I encourage anyone having trouble with an eyegaze and calibration to see if your local ASLA has a speech therapist they can recommend to try different things.

Sue

I think it's Wednesday. I also think I am on the right page this week, lol? It's been a trying week but I'm hanging in there. How about the rest of you?

good to see you here sooner, it's already Thursday for me and I'm here

Thinking about everyone....hope things are okay.

Busy week but I'm trying to learn from Dave and take some of my own advice. I need to try and get help at least a few nights a week. I too am starting to burn out.

narrow, I resisted needing help at first, then it felt so strange when I started, and then I began to feel the benefit and wanted more! I could not have done my short time as a CALS without the help I had, so I cannot imagine how CALS manage over a long haul.
Caring for a PALS should never be a one person task!

Tillie I have nurses M-F for 10 hours each day so I can work. Started that 9 mo after Brian got his teach and vent. That was 5 years ago this month as he got his trach on Aug of 2010. Up until Jan that worked ok, but then he quit sleeping through the night. Now I need more help. The only thing holding me back is worrying about insurance which currently covers my nurses. One, they could deny more help or we could wind up losing this plan at the end of the plan year. It's happened to me before. If that happens I'm in big trouble. We make too much to qualify for nurses any other way, but not enough to be able to afford them on our own. I can't quit work and even if I did DH's. SS is still just over where we need to be. I trudge on, but will be looking into it.

It's sure a fine line to walk isn't it narrow!
I hope you can get the help you need.

We're home from DC. Hubby is exhausted, but he held up much better than I expected. Today I think he will rest

Heidi is delighted to be home. I received big kisses when I picked her up from our son's house (and she's not usually a kisser).

Now to get organized for my trip to California Sunday. UGH. Right now I just want to stay home

Becky

I missed Wednesday, I have been very busy with the new house near completion, yesterday and today we have been installing our kitchen and bathroom and getting some tiling done. We are probably still a month away from moving in. We have now had people staying with us most weeks for the last 12 weeks, so we are really looking forward to some quiet time in the near future.
Luv Gem