CALS Roll Call Continued

[soonerwife]

Diagnosed2016, would you mind adding your PALS diagnosis date to you profile? It helps to put things into perspective. Thanks so much!

So sorry your PALS progression seems to have picked up?

My PALS is on a trip to Washington, D.C. I am a bit afraid to see how he is when he comes home later today. Hopefully the same?!

Scaredwifetx, I am SUPER excited! I can't wait to meet you. I can do either day. Just let me know which one works best for you. If I work through lunch, I can leave at 4:30, otherwise it will be 5, unless I can sneak out early, lol! I will pm you my cellphone number.

 

[affected]

how exciting that scared and sooner will get to meet!!!!!!

 

[scaredwifetx]

Thanks Tillie and one day I hope to meet you!

 

[affected]

I think we will one day, you gals just have a blast together

 

[Aussiemndcarer]

Hello. Just checking in before the week is finished. I'm so glad that some of you can meet up. How exciting. Something to look forward to . I'm feeling sorry for myself as all we look forward to is an outing in our van to a medical appointment. Even they are becoming fewer as there doesn't seem to be any reason for them. We kept a neurological appt on Wednesday . Our neurologist mentioned that my PALS is not pre terminal. This was said in context of a statement. Both Jim and I caught onto those few words and both held them close until we got home.funny how little things give you hope. Still no trials here in our state. We get so much advise on diet , bed positioning, skin care, pain management,breathing ,etc but I just wish that we could contribute more to solving the puzzle of ALS/ MND .

 

[Gembead]

Well it's Wednesday again, BJ is starting to get scaly skin on his face and bad dandruff in his hair and says it feels like he has sand between his fingers and toes but they look and feel normal to me. Is this just another joy of MND? Tonight his feet are very very cold to the touch even though he has had his ugg boots on all day, I have a hot water bottle on them just now after giving them a long rub. One day at a time, hope you are all keeping on top of things.
Love Gem

 

[vltsra]

Still here...getting ready to head out to pick up a prescription for my PALS. Yesterday I stopped in the bank, and saw that they were advertising Gleason, and I almost started to cry. Don't know if I am ready to see the film but I applaud them for putting it out there and showing how life is for some of us and will be someday for me. I'm trying to remain hopeful that the attention will generate more interest and funding to come up with a treatment.

V

 

[Nuts]

I'm actually checking in on Wednesday! I'm out on my own, getting the van ramp adjusted/repaired again. This is the second time something has come lose and caused metal shavings/the ramp to not deploy reliably. The good news is, they have wifi in the lobby.

I'm excited for Scared and Sooner! It's always special when we get to meet in person! Oh, I had a short meeting with a therapist a couple weeks ago when my Lexapro was adjusted and we talked about our online support of each other and occasionally getting to meet others (in the context of not having a close enough support group to go in person). He commented on how nice that must be and I couldn't help myself--I responded "yes, until they die, then it hurts". POOR GUY. Seriously, I think it was hard on him, but he still wants to see me again a time or two.

Sleep---I remember that! The numbness in my hands is so bad that they wake me up at night. Still waiting on an appointment for injections in the wrist. We'll see if the carpal tunnel is indeed the problem. Scared, it seems my legs have always swelled. Walking helps them, but not the hands.

Lenore, our dog doesn't even want to hang out in our room anymore. She seems to hate the noises from the mattress, bed, trilogy and TV. Sometimes I want to go sleep in her room with her (she claimed the "storage" room).

Gem, Matt's feet are HOT at night. Swollen (which we expect), and hot. I have to cool them with cold cloths so that he can get comfortable.

Tillie, I've been watching your koalas. Sooooo cute. How is the book doing?

Becky

 

[affected]

Gem, yep scaly skin. I don't know why, but it's so common.

Do get him checked as it is very often fungal. Even if you have a good pharmacist - mine was brilliant and I would take in photos sometimes and he helped me with lots of skin issues.

Elevation and massage for those cold feet - it could be lower circulation, especially as the breathing becomes compromised.

Nuts I hope the carpal tunnel gets some treatment soon!!

Sorry I'm a bit rushed today, but I'm here xxxx

 

[Michellesews]

Here it is Wednesday again. PALS experiencing rapid decline. Dx Sep 2015. Wants no tubes but does use a Trilogy per mask, and now on it nearly 99% of the time. Diet has evolved to mostly smoothies due to swallowing issues. We now have a van but he rarely has the strength to go out, of course we've had record breaking temps so I'm hoping he will feel more like it once it cools down. Hope everyone else is staying cool out there.

 

[KatieNBoyd]

Checking in ...and reading up on you all..
Yesterday I purchased a simple manual brand new Ashley Recliner chair for my PALS anniversary (7 years on the 15th) He barely acknowledged it.

Then he had to go run and visit with some people that we know. He didn't call them just said we have to go see them. We did. Returning home Hospice called and said they could come and meet with us as well as bring the hospital bed. PALS just said "what ever"

Our 15 year old and I emptied the bedroom and took our queen bed out to the shop. Then from his mighty position in the NEW RECLINER... he says "don't put the mattresses in the shop put them in the shed" (I won't do that because there are mice in the shed).

Luckily for us our new Hospice nurse is a gem and good looking She charmed him and he began to relax and talk with her. WHEW!. They are getting us a Trilogy with humidity (ours did not have that)

and he is now sleeping on the hospital bed.

Now I have to figure out where I am sleeping, probably the blow up bed next to him.
Hugs to you all!
Katie

 

[Shawnlee]

Hello everyone just checking in. Don't post much as my PALS has the very slow progression. Just learning on a daily basis what happens next. Did drop the PT about a month ago, the therapist didn't seem to get the concept of ROM only kept trying to get him to exercise, he would take 5-6 days to recover from it then back we'd go again just didn't seem to be helpful, but more detrimental. He wears a foot brac, and does seem to help, but still falls occasionally, Dr. Recommended a walker but he has refused to use one. Now he has no use of his left hand, thank goodness he is right handed. But now I have to do more and more for him. Never seems to be enough time in my day. Not trying to complain, but sometimes just want a break from any responsibilities. Relax is a hard word or undertaking for a Cals.

 

[soonerwife]

Well I missed Wednesday! More of the same for me. Scaredwife and I had a very nice Wednesday evening. It was so nice to meet her. She's beautiful inside and out.

 

[kmarie]

I missed Wed. again. Took a week off to visit family, but things didn't go so well at home. My husband still is Mobil
But he drops things, like a baking pan out of the oven, causing a fire, in the oven. He got burned a little but got the
fire out. We are trying to get our Van through the VA, all is approved except the final ok to pay. The VA clinic ordered
him a regular wheel chair June 1st, but it is not here yet. Since then the OT ordered an electric one. The clinic wanted
him to use a regular to build up his strength....go figure. We live in a small town so they haven't had to deal with ALS yet.
In general all is going OK, I read the forum and get scared about what is coming. Scott goes back and forth with denial
and understanding what is coming. All I can say is I am really scared and can't get to sleep very easily because I start
picturing the future. The future for him, for us and then me alone.
I appreciate all the post. Sadly I am not alone.
K. Marie

 

[Lkaibel]

I missed Wednsday too. An amazing thing happened today and yesterday evening. I am not constantly thinking of ALS.

Brian was diagnosed 6/30, so it took over a month. I have waking moments with that NOT on my mind. Thanks God.