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As someone who went through my father's cancer journey, I learned not to ask how are you? Crappy, dying, in pain the list went on.I asked instead how today was? Overall things were falling apart, but some days were better than others.
Vincent
 
I sometimes say "I don't know any more how to answer this question."
You know what else I don't like? When they ask the same question about my pALS.

Though...many people are genuinely concerned. And I often don't know what the 'right' thing to say is either.

I also get to see the best side of people, like this past weekend when the waterline broke. We got so much help, friends (plumber and electrician) dropped what they were doing and came over to help and even the repair people opened up about their ailments.
 
To friends and neighbors I see on a fairly regular basis, I will go into more detail, like: "today was a good/bad day or we're looking forward to participating in an upcoming clinical trial or multi-disciplinary clinic, etc."

To friends and acquaintances I see considerably less often (i.e., run into at the market or elsewhere) my standard response is "we're taking it a day at a time, thanks for asking." If the conversation leads to a more detailed discussion, or not, so be it.

In each case I believe the concern is genuine. People care, on a certain level, else they would not ask. My response is tempered by the situation as described above.

Ken
 
Ordinary.

Not rich, not famous or beautiful, just ordinary.

I want to be sitting at my desk at work, anxiously waiting for the 3 day weekend to begin. To get aggravated with all the traffic on the way home because my route also goes toward the Jersey shore and it's a summer Friday. I want to be able to sit on my patio in the sun, have a beer and host a barbeque for my family and friends this weekend.

I want to roll back the hands of time to before all this began when I was ordinary.
 
So well said . It so simply puts ALS and life in perspective . Kate
 
sigh ... ordinary ... wouldn't it be nice ....
 
Ordinary, I don’t even know the meaning of the word anymore.

Praying a blessed weekend for your Jersey.

Hugs
 
Ugh.

Spent the morning yesterday dealing with DH's PWC issues. A new tech came out (I requested a different one than we had been getting, as he seemed inexperienced at best) and looked at the chair. He took it apart and decided that it needed a whole new back assembly because something was sheared off. And the elevate needed to be replaced. The elevate function had been spotty lately, but it was completely kaput yesterday. Oh, and he should have new wheels, casters and batteries.

The back part is the real issue. He said that DH should not use the recline feature, and be careful with the tilt as he deemed the back very unstable. This presents a problem, as DH uses them both heavily. He is constantly re-positioning the chair to try to stay as comfortable as possible.

The tech was understanding and said he would put a rush on the parts. Then, of course, there was the matter of the elevator - insurance will not pay. He got a sticker price of $4400 from Permobil, but said they would be able to discount it "some". DH and I spoke about it and decided it was not worth the money to replace it. I know we can appeal the insurance decision (did that to get it covered when he originally got the chair) or contact Team Gleason about a grant, but I don't want to slow things down. The elevate was a great help when I could get DH up from the chair to transfer, or pull up to a hightop table to eat by himself, but those days are long gone.

So the chair is scheduled to go to the shop for repairs next Friday, pending receipt of all the parts. The tech said he would come out really early and try to have it back by the end of the day. Until then, we try to cope. Oh happy day.

It's getting up into the 80s outside here, yet DH is still cold all the time. Meanwhile, I, the one who is always cold, am melting when I'm in the room with him. And he wants someone with him all the time. He wants/needs to be moved often - probably will need more, with the current chair situation - and he's still pretty big - 6'1/225 or so. He spends most of the day in our sunroom with the temperature around 78. Occasionally he will let me put the ceiling fan on, but I can't even open the windows to get a little breeze. Transferring him to the commode and back in the bathroom leaves me a sweaty mess! He was freezing all winter, but I was hoping things would get in the spring/summer. I guess not.

Hoping for a better day today.

Hugs all around!
 
Hi Jrz !
Bouncing on the temperature issue: my dad also tends to feel cold when objectively it is warm. It wasn’t so a while ago. Do you think this has to do with their not moving or some physiological problem that could be helped?
The silver lining is that when it does get really hot this summer he won’t suffer from the heat so much I suppose
 
So sorry about all the PWC problems on top of everything else. The first year or two my husband was always hot and wanted a fan on him all the time then it switched to being cold all the time( which he never was previously). We kept the thermostat around 72+( couldn't handle it any higher), heavy flannel men's lounge pants, heating pad on his lap that he kept his hands on, and a blanket. I've heard this from many others but do not know why. Hope they can get your WC fixed fast! Kate
 
Jrzygrl I’m so sorry about the wheelchair problems. Those are the worst.

I hear you about the hot and cold. Like Kates husband, Brian was hot at first, then cold. Not quite as extreme as your’s but yes the room was hot.

My mom is like that now. She keeps her room set on 78 at the home. You need to wear a swimsuit to visit (I don’t) :). It does make things very difficult at times. However she is now down to skin and bones too :(

Praying they are able to get the chair done in a day like they hope and that things last until they do.

Hugs
 
ALS definitely affects the part of the brain that allows the body to regulate temperature - makes it very difficult as a CALS you can't use your comfort level as a guide.
 
We just had wheelchair problems and it was rather hard and I had little patience left. We only had to wait for 2 days until technician w. new cable arrived and it fixed the problem. Jrzygrl, I hope all will hold up until the new parts arrive.
Our air conditioning in the house is set at 79 or 80. I'm glad it's warm outside and inside :). No more cold night for my pALS. Blankets felt too heavy to him.
 
Quick update - one of the PWC parts is in backorder. Numotion called on Thursday to let me know that the repair appointment was a no-go. They called ba k Permobil to get a split shipment of the parts that are available. But, the tech that needs to do the work is not available until this coming Saturday. So we'll hobble through til then. When the other part is available, we'll need a second repair session. The second one will require 2 techs because the whole searing mechanism has to be taken off. Crossing my fingers that it won't be a scheduling mess.

Finally got the recliner I ordered for DH. Got a Golden Cloud Lift chair. Even though he cannot stand, I figured it would give him another place to sit rather than be in his wheelchair all day. I can get him in with the hoyer. He spent some time sitting in it on Friday. Lots of adjusting for me because he uses a head array with his PWC. The next day, I asked if he wanted me to get him in it again, but he told me that he thought it was too soft. Ugh. I want him to try it again. He has trouble adjusting to changes these days. Otherwise, I just bought myself a really expensive recliner.

And so it goes...

Hugs all around!
 
Great job getting the chair -- he will use it and you are giving him options which is important. Hand in there -- hope you get your appointment soon!! This disease is for the birds!!
 
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