Dang it, I'm having trouble walking this morning.

[Nuts]

Argh! The back/hip/leg issues I worked so hard to get under control before hubby lost the use of his legs are back with a vengence. It took me an hour, pain pills, and a tens unit to get on my feet this morning. I've been sitting again for awhile and now things have tightened up again and it's agony to get up.

Frack! My poor darling was trying to wake as I struggled to reach the tens unit this morning. Without his hearing aids and very groggy from drugs, we were having two different conversations. It was almost funny.

This is going to be an interesting day, and I think we're over arguing about using the lift.

The aid comes at 11, thank heavens.

I know we all go through this, and it SUCKS. It's one of my great fears...being sidelined myself and unable to take care of my sweetheart.

I've mentioned my wonderful BIL and wife who moved here from Florida to be available to help out. She's having hip replacement surgery next month and he's starting to have back problems. What a group we are

 

[sunnysierra]

Oh, I am so sorry to hear about the physical problems. Like life wasn't hard enough already, right? I hope you are able to take a good break and do whatever it is that will help you feel better. It so important that we stay healthy for our PALS, but good grief, life happens. I'm grateful I just had my achilles tendon surgery. Before his diagnosis, Chris and I talked about me postponing the surgery until "his arm got better." Hah. Soon as I get this cast off I will start PT and try to get into fighter form.
I will be thinking about you and envisioning a strong healthy pain-free back, hips, leg. Kathleen

 

[Nikki J]

Really really sorry. Hope you feel better soon. I guess this is a wake up call to get as many things in place as you can - both assistive devices and more or different aide hours. We all know if you never did another transfer or bathing dressing there are a million things that still need doing and you need to be fully mobile to accomplish them efficiently. Ironically I did something to my back too ( acute fortunately not a chronic problem) i can not even imagine trying to care for a PALS with this Keeping yourself well actually should be the priority here. If you sink so does the rest of the ship

 

[Nuts]

Oh SS, I'm so glad you got your surgery done before the diagnosed!

Nikki, this little wake up call prompted me to hire a private trash collection service (the county here has none, so everything has to be hauled to a collection point). I've been rolling bins into the van using the ramp, but the whole process is still a pain. Done---collection starts Monday. I do have respite hours and an aid who I'm sure would come in this weekend, but sometimes quiet and peace is wonderful medicine! I'm not sure why hubby wanted me to shower him this morning. He told me to just put the shower chair by the bed and he'll do everything. I countered with insiting upon the lift. He relented very quickly and is staying in bed until the aid shows at 11.

I'm ok as long as I stay up and walking, but sitting is miserable. I've got to take the trailer in to have the brakes repaired (those brakes that didn't work on our trip) and it's an hour drive each way, so I'm thinking heating pad. It'll work even better than those heated seats!

I do hope your back heals quickly. I can't imagine a bad back and ALS!

 

[Green Queen]

Having a disease in the house certainly does change EVERYTHING.

Nikki I'm sorry to hear you have back problems. Once my back starts aching I'm done for the day. Please recognise your limitations as you recover.

Kathleen I hope the Physio goes well. Same goes, don't overdo it.

Becky, man you've got it going on at your house haven't you! Hopefully that machine will work it's magic for you. Our brains may think we are 20, but unfortunately our bodies (ALS aside) give us away.

Whilst we are on the subject, Carrah comes home today and says her hand was weird today, she couldn't open her biscuit packet properly. She then said she had really bad cramps in her leg during the night. I know, I know, it's just teenagers right? But this is MY teenager and I have PLS! Always something to worry about.
The funny thing was, Connor says to her,
'Carrah! Don't be so insensitive! You will worry our mother!'
How cute is that!

God bless, Janelle x

 

[affected]

How awful nuts. It makes me realise the toe I broke when caring for Chris was not as big an issue as it would have been had I hurt my back.

 

[bigmark1954]

pad.

I do hope your back heals quickly. I can't imagine a bad back and ALS!

Oh my Nuts.........you do know somebody, it would fill a page to whine about everything that challenges me, that is health related.
Hoping you get some relief along the way, to get you past this rough spot....
Sometimes the reality of life is just a b!tch!

 

[lgelb]

Becky, since you do a lot of driving, make sure you have the best car support for your back/leg, and get one if you don't. Some of the best have memory foam and very solid metal frames. Sacro Ease is a good brand.

 

[Nikki J]

I would add to that you need to stop and take a little break at the half hour mark. An hour in a car seat will push your back over the edge. That was what did me in. A hour in a car. Followed by an hour in a plane.
Good for you for contracting out the trash. Keep thinking of things that will make your lives easier.

 

[lgelb]

And everyone should be doing warmup stretches in the morning if/as mobility permits. On the rare days I forget (like today), my back & neck start popping around this time.

Nikki, Becky, hope you feel better! Janelle, such cute/incisive kids!

 

[gooseberry]

Becky and Tillie I hear you both. I fell off Juliens bed onto my lower back and like Becky said it causes all sorts of fun shooting stabbing pain down the legs and in the hips. I literally feel your pain Becky! Boy do I wish I didn't

While I was getting over a tough period when we first moved in, I "stubbed" my toe. Only to have it be at an odd angle and turn purple. I pulled it out straight and gently taped it to another toe. Life as a cals wrecks your body if you aren't careful. I have learned you can't rush, and you can't take shortcuts!

Hope everyone feels better soon. Pain really stinks on top of everything else.

 

[Nuts]

Hi Mark! I was thinking about you awhile ago and wishing we'd hear from you. I woke at 2, took more pain meds, got the heating pad, and fought it until 4. I got up, but Heidi fussed at me until we went back to bed...with the heating pad. Oh, my pain is nothing compared to what you PALS go through, but it is bad enough for me to put my foot down about using the lift to move Matt.

He resisted, I insisted, and he declared that he could transfer himself. You know, of course, what happened next. He broke out into song--"I gotta be me...." as he slowly sank to the floor. I grabbed the camera, but he insisted on video as he tried to convince Heidi that it was my idea. She gave him what for..

http://www.youtube.com/watch?v=ikm36QtJTaY

I havent posted video before, so I hope this link works.

Steph, the Tramadol is taking the edge off, but I'm still squirming

Nikki and Laurie, good advice. If only I wasn't always so pressed for time. Oh well, I have more to be thankful for than to complain about. Maybe we need to revive that thread...

Tillie, did you self treat your toe like Steph did? We need docs to do house calls for us!

Janelle, it is never a dull moment around here, that's for sure. I'm sorry about your worries for you daughter. With our kids, it seemed that only when I chalked their issues up to being teens did they turn out to be real. Argh! Conner is so sweet, but then he has a wonderful role model in you!

Becky

 

[Green Queen]

Oh wow! You truly are American! ! Everyone has an Australian accent in my head...

Heidi sounds Australian. ..

Hope getting off the floor was successful with no pain for anyone.

Laurie and Becky I am extremely blessed with my kids. My true caregivers.
God bless, Janelle x

 

[affected]

That video was totally brilliant! Heidi had me rolling about.

It really brought home for me though the difference between types of ALS. I see some PALS and they are just a clone of Chris, you would think you were looking at the same person.

To see Matt laying flat on a floor laughing, waving his arms and talking perfectly is such a contrast to the bulbar onset. When you were away I kept trying to imagine having done that for Chris and it would slip from my grasp like an oily rope. That video gave me clarity - I can see how you could travel and enjoy things and I felt a surge of such happiness for you both.

I never saw a doctor for my toe - no time to sit for hours and hours in an ER to be told it's broke when it was obvious. I used the wheelie walker a lot, I'd sit on it and scoot around backwards or put things on the seat to get them around. One of Chris daughters came to help the following day, but poor 19 year old was tired so spent the afternoon napping in the hospital bed with her feet elevated. I didn't bother asking for help again :-?

 

[gooseberry]

I hear you Tillie. That's why I called my sister, who is a nurse, and did my own doctoring. Luckily my paying job is a desk job so it wasn't too bad.