New around here and have some questions.

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affected

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Sorry I'm behind in welcoming you!

You've received lots of good advice. I think you need to seriously talk with your clinic team about lots of areas of care for your PALS.

The move sounds really daunting if you don't have a great relationship with his family.

We will try to help as best we can as we all get to know each other.
 

DreamsEnd

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Hey Crabbyswife,
So glad you posted on here and shared your feelings. My pal's family and friends aren't like yours or Atsugis's fortunately so we have all kinds of support but I still feel overwhelmed. You're getting wonderful suggestions and information from others on here.
Take this for what it's worth: Have you considered renting your Florida home and renting in NJ so you can come back? You're happy there and the last thing you need is to be stuck with THAT family. Please think of yourself too. I hTe the thought you have to leave what you know & love, you'll need that later.
Second call the ALS assn to see if the can lend you a roho cushion for his chair.
Third, if you can get out, go to your local fire station and ask the firefighters if they can help. Every FF I know helps their brothers anytime they can.

Good luck to you and keep us posted, please.
Big Hugs,
Sherry
 

cheerleader

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So sorry family hasn't stepped up- but maybe they will when they see face to face what you are both facing.
We got a power recliner for my hubby- and it was our most used equipment. He much preferred it to the wheelchair. He, too, had trouble getting comfortable, and because he refused to wear a neck brace, needed neck and back support and a way to take pressure off his emaciated body. The power chair was perfect- and he literally lived in it for the last year of his life.
If there is any way you can hang on to your Florida home, you might consider it. Maybe you could rent it out for income. Unfortunately, the day will come when you can return there with your son. I understand your love for it- looking forward to my return there in October as a snowbird. Call it my " happy place." Amazing how the sun and blue skies heal the spirit.
Maybe you'll be pleasantly surprised with his family. Hugs and wishes for a successful move with friends and family surrounding you with love and help. And if they don't, you'll still know you helped your husband do what he wanted as a loving wife. Donna
 

rosec

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Hi Crabbyswife, too bad your family is not there for you. My husband having ALS has showed us who our true friends are and which family members really care about people. I hope over time you will get help from some of your family and friends.
 

Crabbyswife

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I contacted the mda to ask about a roho cushion. I'm going to look at the two websites hopefully this weekend. Pat had a rough day yesterday. So I was very busy.I'm not working (there isn't enough hours in the day) so money is budgeted to the penny. I can't afford the move without selling the house let alone renting a place up north I wish I could. I am going to look I to the recliner. I think the cushion and recliner could help. He has lost so much muscle and on top of that he had a accident while working as a emt where he was at the bottom of the stretcher bringing a large patient down a flight of stairs when his partner at the top of the stretcher let go and he hurt his back. It pushed him down stairs and was laying on top of him but he caught it and the patient wasn't hurt at all. So that definitely contributes to his pain. Right now we are working on getting his feeding tube placed. And of course packing. Thank you everyone this is so helpful.
 

lgelb

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So he has a BiPAP he's not using because the settings may be wrong? That is not uncommon. What model is it? I can tell you how to adjust it and suggest a starting point for "start low, go slow" settings.

The parasomnias you mention when he is sleeping could easily be related to insufficient oxygen, which the BiPAP is designed to help at this stage. For example, the active dreams and kicking could mean that his subconscious is trying to arouse him (possibly to breathe in the air his body is lacking).

The shaking is concerning and if nothing else expends energy he doesn't have in reserve, suggesting that you really might want to move the BiPAP up on your list. It only takes a couple of minutes to adjust. If the shaking persists once he's on BiPAP, it would be time to look at things like diet and hydration.

What kind of wheelchair does he have? As Mike mentioned, you definitely want to keep changing up the tilt, and I will add, make sure the arms/shoulders are supported, esp. with a history of lumbar injury as you mentioned. We used foams and pillows, way beyond the wheelchair arms, which were only a foundation for the elbows, which also had foam support.

Everyone has had great advice. Ocean County is one big destination as I'm sure you've seen...you'll have a lot of fun outings there, once you get past all the domestic moving madness. Just take one to-do at a time.

I would certainly contact the ALSA chapter that covers Ocean County and see what advice they would have (from what I remember, the clinics that way are pretty widely spaced, e.g. Newark, New Brunswick, Philly, unless I am forgetting one; my husband was diagnosed @ Penn, so that one I know), assuming this move is in the fairly near future. And you might keep NJ Transit access in mind when planning your new rental; the winters and traffic may make you happy to have that access at times, even if you aren't normally transit passengers.
 

Crabbyswife

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Sorry, I logged out and when I finally got a minute to myself I logged back in and couldn't find this thread. I took a picture of pat's machine but don't know how to get it on here. His wheelchair is a permobile c3. It's been crazy getting our son ready for school to start this Monday. The breathing machine is small black it says resmed on it airsense10 elite. I am still finding my way around this website and it's a little hard to figure out just yet. Thank you very much.
 

Crabbyswife

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I really appreciate everyone and their input. You all are very welcoming. Thank you.
 

lgelb

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CW, your machine is a CPAP, not a BiPAP (in other words, only the pressure when he is breathing in can be set as a number, though your model does allow for a slight difference in exhalation pressure through a feature called EPR).

A CPAP is used when someone has sleep apnea, but really, BiPAP is becoming more popular even for apnea and is definitely necessary in ALS. Was he prescribed this machine before he had ALS and if so why? If it was after, tell whoever wrote it, ASAP, that your husband has ALS and therefore needs a VPAP (stay w/ ResMed, but he needs a different model), preferably a S9 VPAP ST-A.

Meanwhile, if he didn't have sleep apnea before ALS, I would turn the IPAP setting down (depending on where it is now) to 8 and the EPR to max. Let me know if you need help doing this.
 

Crabbyswife

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That's very interesting because he was diagnosed with ALS before he got the machine. He did the pulmonary function and overnight testing after diagnosis. His pulmonary doc is not great in my opinion because he was supposed to write for a suction machine then after the four months it took to get the machine we currently have he says that's OK you can just continue to use the bulb syringe to suction him at night. Pat chokes alot at night and has even thrown up in his sleep. He got saliva caught in his wind pipe and that was a terrible ordeal to clear up.I have a appointment for a new pulmonary but it's like 8weeks away. If you could please help me adjust the setting on his machine I would like to try it. Right now he gets so exhausted from trying to breathe with it. Thank you.
 

affected

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I'm a bit stunned it was CPAP he was given.

Laurie is an expert on these machines, so at least in the meantime you can get it working with her help and then move to the right machine.

Shocking that they didn't consider the risks associated with the choking as worth treating!
Does he sleep in a semi upright position?
 

lgelb

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To adjust the settings of your CPAP, CW, you need to be on the Home screen. Then press the turn knob and the Home Button at the same time, for 5 seconds. Then it will show you the Clinical Menu. Press settings and you can enter into the following sub-menus to adjust the settings. I have shown below the settings that I would try first in the order that they should appear on screen. There may be some variation since machine models differ.

THERAPY
Pressure (I'd start at 7, then you can go up or down as Pat needs)
Mask (Pillow, FullFace or Nasal, whichever you have)

COMFORT
Ramp Time (0)
Start Pressure (4)
EPR (On)
EPR Type (Full Time)
EPR Level (3)
Climate Control (Auto)

If Pat feels like he's getting too much air, cut back on the pressure and just adjust the EPR downward, because the minimum pressure this machine can do is 4, so for example if pressure is 7 and EPR is 3, it will cut the expiratory pressure to 4 but it can't go lower than that, so if you have max pressure of 6, it's not going to be able to do 3 and might give you an error message when you try to set that (depends on how they are implementing the algorithm).

If Pat feels that he needs more air, crank the EPR back to 3 if it wasn't, and increase the pressure. Make sure you have distilled water in the humidifier.

ACCESSORIES
AB Filter (No)

OPTIONS
Essential (on)
Smart Start (Off)
Reminders (off unless you want them)
 

zoohouse

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Tim's family is pretty much useless when it came to helping, even communicating for that matter. Out of 12 siblings only 2 have visited, and one phones occasionally. I understand the ones that can't afford it but many are quite well set up, and this is a destination area with a lot to see and do. Three of his 4 kids have visited and truly the youngest one is the most helpful, but he is 16 now and has a had time remembering to breath I believe. (Glad my son's grew out of that stage) His kids were raised with little or no responsibilities and have a hard time dealing with daily normal life let alone helping a father with ALS. My kids help when ever they are home, but work and live atlas 5 hours away. My one sister visits once a week and brings an ice-cream treat and visits which is really nice. But truly the most and most helpful help comes from our church family. We live in a small city and the home care is not comfortable with his ventilator, and to be honest I have found few that I would trust with Tim's care. Thankfully because I am a nurse, I have some friends that go to the same church and are nurses that volunteer their time once a week to give me a break, and two of their husbands come in to help as well. The pastor visits every couple of months, and others who are not nurses bring meals(3 meals a week) and help with house work. Others stepped up with Tim's son to take him camping, fishing, and target shooting while he was here for the summer. We have been blessed beyond our wildest dreams, and because of these amazing people I have been able to be Tim's sole care giver except for the one day a week break for the last 3 years. I took leave from my job as an ER nurse coming up to 2 years ago, and as long as Tim stays on this earth I will continue.
If you do not belong to any church, or not even Christian for that matter, I know that our church has stepped up for non-members as well. Our church which is Evangelical Free has a very strong mission base, supporting at least 13 missionary families all over the world. So helping in the community is only natural. Admittedly we have an extraordinary community that always raises more money that much larger richer communities for all types of charities. Keep your chin up, and know that you have at least a family here who will do their best to support you emotionally here.

Paulette
 

Crabbyswife

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Thank you so much everyone. I apologize for not being here for a while but I was dizzy and nauseas and had left sided facial and head numbness. Turns out I had a mini stroke(tia). I'm much better and was told I should test till the end of this week. I'm only doing the minimum besides Pat's care. I started 81mg.aspirin and was told to keep stress free. Lol, also was told a drink a night would help. Only I don't drink the doctor laughed when I told him that and said to find a sweet wine. Whatever that is. I'm lucky I won't have any damage to the outside and minimal on the inside. But I have to admit I am getting confused easy. The doctor said to give it time. I haven't really messed that much with his cpap it just fusterates me every time I touch it. Anybody know what a sweet wine is? I don't like stuff that tastes like alcohol.
 

Atsugi

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Muscatel or Reisling
 
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