Need help from PALS..many questions

[hope12]

Hi ...I am new to forum and need your help. My boyfriend was diagnosed with ALS in Aug of 2009. I have reached a point where I feel I don't know how to take care of him or what to do next.

He no longer has use of arms, hands, can stand with help, can't eat (does have PEG tube) although swallowing is still strong, and speech is deteriorating. He whispers and we do alot of spelling.

His mouth has become dry, at times the saliva is stringy and slimy, then other times frothy. I have tried Biotene, a toothpaste from Colgate, lemon swabs, Act and Plax mouthwash, and ice chips. Nothing helps. Because of the dry mouth, calcium deposits have hardened on his teeth and the dentist suggested scaling. Because of his exaggerated gag reflex, the dentist recommends putting him under general anesthesia. I'm worried about his breathing. Has anyone else faced this issue?

Also, bathing is extremely difficult...has anyone used a E Z Bath? What about haircuts? Neck braces..we have purchased a soft collar and a headmaster..neither work.

Slings..what do I look for in a sling? I was given a website to search for a sling....drivemedical.com...I think. I have no idea what to look for in a sling. Mesh? I'd like to purchase a full body sling with safety straps for legs (divided leg?) possibly one that can be used for toileting.

What do you do for toileting?

What do you do for amusement/excitement? Corey sits all day in front of the TV. We play Deal or No Deal on the computer. He has no desire to go out.

Do amplifiers work for speech. I was looking at speech enhancers? Anyone have experience with enhancers.

Wheel chair is another issue... we have a car and a power chair will not fit in the trunk. The company we are getting the wheel chair thru recommended an Invacare manual chair, but it just doesn't seem to be working. In order to get it in the trunk, both the seat cushion and back cushion must be removed, the arms removed, and the head rest removed. Is this the norm?

I want him to be as comfortable as possible and happy. I want to share whatever amount of time he has left and live life to the fullest. He is the love of my life..my soul mate. When he goes..I'm going with him. I can't imagine life without him.

Please help me!

Thank you for listening

Kim

 

[abbas child]

Hi Kim,

I am sorry your boyfriend has ALS and is having so many issues; I will tell you that the divided leg sling you spoke of sounds good. And using a hoyer type lift, you may find a bedside commode easiest, since you can put it anywhere that fits, and lower him onto it. Is the ALSassoc. involved with you guys? They have loaner items you might use, and the social worker will go through your house and help you know what you need.

Ann

 

[abbas child]

Kim, back again; I get hoisted when my caregiver arrives and get off-line fast--off and on all day. I have been thinking about your situation and need more information. What do you have as support--Medicaid, Medicare, insurance, VA, the ALS association, MDA association, nothing yet...

I don't think this wheelchair idea is very good for travel because he's likely to lose his ability to transfer and will need a handicap vehicle using a power wheelchair, or public transport for handicap use. The purchase of a wheelchair through insurance is usually only a one time offer--so it needs to be used for the high priced model. There are also used wheelchairs to buy, and those borrowed through the ALSA. You see why we need more information.

If his head is falling over and he crumples up in his chair, he probably needs to be in a hospital bed. Otherwise, he needs a very deep tilt with his head resting on a headrest. The bed will support him fully. A collar helps some, but his posture will be really messed up--I speak from experience.

Can he drink water at all? The bulbarians here are experts, but even water thickened with "thickit" (sp) would help with the thick mucus.

You can probably cut his hair. Get an electric clipper and just practice--scissors would be too hard with his lack of strength.

I only whisper for most of the time. I hated the amplifier--the Chattervox--too heavy for my lap and too fragile for my clumsiness. I have chosen to whisper and then let it go. I don't have tongue issues at all; mine are throat. If your boyfriend has any "drunk" sounding speech, an amplifier wouldn't help. However, mine is a loan closet item and there's no expense in trying it that way. You can ask the ALSA if you guys could try using one.

Kim, let us know about your support, and what you're able to use. I hope this helps some. Oh--I like to read, listen to music and download Netflix. I see several friends who come to help me. I spend a lot of time on this support forum--there is much help from reading past posts. Look at the bottom of a page to find similar topic threads. In the blue bar above is the white word, "Search"--to find information.

You're in my prayers...that's another thing I do as part of my day. There is a Christian thread if you have any desire for that support.

Hugs,
Ann

 

[Miss]

Like Ann says, let us know what help and insurance (medicare, private, VA) you have. That will help greatly in steering you in the right direction for equipment, aid, etc. What medications does he take? Hospice might be a good option for aid. Let us know. We are all here for you!

 

[caldona]

Kim

I ordered my sling online and it works very well for us. Also Medicare will pay for a port a potty I now use it for taking a shower it works better than a shower chair I paid over two hundred for Medicare doesn't pay for them. Netflix is real good movies 24 hours aday if your set up just right for only 8 bucks a month. I also have a Dynavox computer it cost me nothing Medicare paid their part and my other insurance paid the rest of the bill. With this computer my daughter fixed it so I can change channels on tv also my cell phone is set using a blue tooth to were I can make and receive phone calls. I can also receive and send text message. I have 911 set up as one of my phone numbers. It has a calendar and you can log in birthdays or doctor appointments or whatever you need. We installed a track over my chair, bed, and bathroom then ordered from internet a Coffing 500 lb rope hoist it worked so well I now have a hoist for each track they weigh about 20 lbs. Tracks are tracks bought at hardware stores used for sliding doors. My husband put screws ever 16 inches thats how far our rafters are a part. Our bar we hook the sling came of a hoyer lift. We take it to whatever hoist we are using.

 

[tdamess]

so sorry you are going Thur this but to me it sounds like you need someone to talk to ... do you have a foundation in your area that has a patient service person to help you with all this you are so overwhelmed and you know all the things you need to ask .. you just need to take a minute rest and find someone who is knowledgeable in this area to talk to then double check with us to get opinions from thoese who use what you think is right

 

[rcharlton]

Hi Kim

Sorry about all this. Your boyfriend is lucky to have you in his life.

As to dry mouth, most mouthwashes contain alcohol and will actually make the problem worse. There are specifically designed oral moisturizers out there - ask your pharmacist.

For a cheaper and natural alternative to oral moisturizers, and if your boyfriend can tolerate it, my dentist recommended applying (with your finger or a swab) a small amount of olive oil or vegetable oil to the teeth and gums.

Good luck

 

[hope12]

I want to thank all of you for responding to my questions....I wish I could take all of you in my arms and somehow make all of this go away.

Corey was in the hospital for 12 days and just released a few days ago. We were told he had pneumonia, but then the doctor was not sure whether it was just another symptom of ALS. He was sent home with bi-pap...didn't qualify for oxygen. I did ask for a bedside toilet and he was fitted with an Aspen neckbrace. He is weak from just laying in bed (we are working on that), but what concerns me most is his spirit. He just wants to sleep.

His mouth has gone from being dry to excessive saliva. Although I shouldn't say excessive because I think it's because his tongue can't push the saliva toward the back of his throat to swallow it. However, because of the dry mouth and exaggerated gag reflex, dentists feel
he must be placed under general anesthesia in order to treat him. I'm not sure his breathing is strong enough to be anesthesized (if I spelled that correctly). I also read if he should choose to be vented, bad teeth/ peridontal disease may also cause pneumonia and place his life at risk.

He has excellent insurance...highmark bluecross/blue shield and Medicare A & B. We have ordered the Dynavox with eye gaze and the ALS association offered us a loaner until he receives his through the insurance.

Corey sucks on ice chips and a wet swab with water. I hink the idea of anything else scares him as far as choking...his tongue just can't take care of any amounts of liquid..I've even offered to spoon it and he declines.

Still searching for a sling....the search stopped when he was hospitalized...stayed with him in the hospital.

As far as a wheel chair, his head does drop forward and when sitting him up on the side of the bed, his body almost resembles a "C". If we don't go with a manual chair, I have no way to transport him. We cannot afford a wheelchair van. The ALS association does offer van access, but that is mainly for doctors apointments. We would never have any together time alone and he would only get out to see doctors. I did find a car lift ...it's called the multi-lift which will lift him from a sling in wheelchair to front seat of car and vice-versa. I'm hoping we can use this means of lifting and the manual chair for personal time and the van for doctors appointments. The ALS association is also looking for a power chair he can use at home for comfort or for transporting to doctors.

As far as medications, he takes (are you ready for this) Enalapril, Rilutek, Sertraline, Ompreazole, Percocet, Valum, Klonapin, Vitamin C, Multi-vitamin, COQ10, Zyrtec, blood thinner, calcium, magnesium, zinc, atropine for the saliva and a nasal spray. I was giving him Vitamin E, Fish Oil, Flax Seed Oil, and Vitamin D, but they are the gel caps and didn't melt or mix well with water. I am planning to try to find these vitamins in tablet or powder form. I know I probably forgot a few..

Caldona...I was not aware the dynavox was capable of changing channels and making calls...I'm hoping I will be able to set his up this way too.

As far as hospice, I've heard good and bad. Hospice scares me.....

My heart goes out to all of you and want to thank all of you (Ann, Missy, Caldona, tdamess, and rcharlton from the bottom of my heart for your help and great ideas.

If there is anything I can ever do to help you, please let me know. You will be in my prayers! Please don't ever give up! Keep the faith and hope strong!

 

[hope12]

I just posted a response to all of your questions and was told an administrator had to approve...any ideas why?

 

[abbas child]

Kim, We've been going through a time with a lot of posts needing to be moderated--it isn't you. Any links to stores are off-limits, however. That is the only reason you'd have a real problem with a post, but hackers and all kinds of trouble have to be kept away for our protection. Hoping to see your response later, Kim--Ann

 

[mare]

Kim-

Reading your 1st post, my thought was that most of these questions are things the OT at your clinic should help you with. But seeing your last post, I'm thinking that much of this is new since his hospitalization.? If this is the case, perhaps he will get back to where he was (or close to it) as he continues to recover from the pneumonia.
But I would still mention these issues to your OT.

I can speak about the dental work/ anesthesia question, as my husband needed some dental work but found it too difficult to: lay back in the chair, tolerate the "rubber dam" that needed to be put on, and had issues with swallowing and needed extra suctioning.

It was suggested that it could be done under "general anesthesia"- but in dental terms, it is really "conscious sedation". In checking with his ALS neuro, he advised us not to do the anesthesia. The difference is in conscious sedation the patient is not intubated as in general anesthesia; therefore his airway may be compromised.
Mind you, my husband's FVC is fine, but due to the swallowing concerns, the neuro did not want him to do it!
I would not do any dental work until you talked with your neuro first!

Also, check the thread for Pennsylvanians (I will post it right after this); perhaps you might find some help there with "stuff".

As others have stated, you have been faced with alot & are doing a great job. You boyfriend is very lucky to have you!

 

[tmasters]

Kim,

Regarding the manual wheelchair not fitting in the trunk of your car-- ask the ALSA if they can loan you a "transport chair". These are usually more compact and lighter than a standard manual chair.

Tom

 

[lgelb]

Kim,

A little late to the party here, but --

Of the meds you listed, several have similar effects and could be causing/worsening dizziness/sedation/depression/anxiety: Valium, Klonopin, sertaline. I'm particularly puzzled by why he is on two benzos. Is the same doc rx'ing these? While Valium and Klonopin are both benzos, Percoset is a narcotic pain reliever and Zoloft (sertaline) is an antidepressant. The combination of a benzo, opiate and antidepressant warrants caution even in someone w/o ALS. You didn't mention severe pain -- not sure why the Percoset?

I would have a good internist do a med audit and be clear about what he is taking for what reason. OD'ing on benzos in and of itself can cause apathy -- the loss of spirit that you mention. The atropine may not helping, either, though I understand you are looking for options for the excess saliva.

Not sure what "blood thinner" you are talking about but if it affects INR, as does warfarin, for example, so can fish oil, flaxseed oil, CoQ10, vit E, so I would recommend you have his INR checked regularly or get a home meter especially as you add/change dosages.

Re the power wheelchair issue, I echo those who point out that insurance only pays for one chair and it takes a while to get one. Get a power chair with all bells and whistles, preferably serviceable by a firm nearby, and worry about the van issues later -- you may find someone in your town or that you know owns a van that you can rent, that there are places you can go using roads/sidewalks, and you can research van rental firms near you for occasional outings. I take it there is no w/c accessible mass transit in your area? No paratransit out of Pittsburgh? No wheelchair taxi vans? Most cities also have cabulances -- here is one PA list.

You are obviously a brave and devoted caregiver, Kim. Corey is lucky to have you.

--Laurie

Another idea -- I know it's radical -- is to move into the city for more access to some of the things you mention, and/or to move closer to family, if there is such a place.

As far as the dental work, scaling can be done a bit at a time if needed. There are dentists that specialize in work on patients with jaw/gag issues. I would consult the nearest dental school(s) and the MDA/ALSA/related associations (pediatric, cerebral palsy, etc.) for dentists they may work with.

If Highmark is your primary insurance(?), your boyfriend should be able to get PT and OT at home, to answer many of your questions and help him stay comfortable/mobile as possible. That is not the same as hospice, though the same agency may do both. Your neuro can write the scripts. It sounds like you may not have a doc that is up on dealing with ALS -- again, this is where a home health agency can be a great resource for you.

Dual coverage is great in theory but can lead to coordination issues and not getting everything to which your policies entitle you. Talking with case managers early can help clarify.