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JMH

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I just got back from spending the last 16 days with my Dad. For the most part he was in fairly good humor. The last couple of days got rough. He complained about being in pain at night. I went to the Dr. who prescribed Oxycontin. It seemed to really bring Dad down. At least I am assuming it is the drug. Is anyone familiar with this drug? Is there maybe a better alternative?
It worries us so much. Dad has been having more choking spells from phlegm build up and we know it panics him. Some days are worse than others. Dr. prescribed a patch to help with the phlegm but we're afraid it will dry his mouth so that he chokes on his food. I'm scared he's going to want to stop eating for fear of choking. He is not sleeping well and gets so tired.
I got a call from the ALS Society - they want my Dad to go in for an assessment to see if they can help him. The city is a 3 1/2 hour car drive away. How do we get him there? He can't walk at all now, can hardly use his left hand/arm and hit his tailbone, causing a bruise that seems to have turned into a pressure sore. We've had a nurse from Home Care come in to check on it but it is taking forever to heal and it is very difficult for him to sit or lie for any length of time. Sometimes I feel as if I'm at my wit's end. My two sisters and I are looking after Dad at home as he is terrified he will have to stay in a hospital or personal care home. We love him so much but it is getting harder and harder to transfer him from bed to chair, find food that is safe for him to eat, etc. We are afraid we will hurt him as he has become so frail. His voice seems to be getting weaker.
Sorry for such a long post. Tired and worried...wondering if we're doing all we can....
JMH
 

Boots

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Sorry to hear you are having such a hard time. Your Dad is very fortunate to have you and your sisters to care for him as long as you can. Is he on any thing to help him sleep? My hubby takes xanax .5mg ( the lowest dose available ) an hour before bedtime and it helps immensely. It is available in generic and inexpensive. Maybe you could ask his doctor about it over the phone. I know our doctors (both primary care and specialists) have been open to suggestions and if appropiate will usually call in a prescription immediately. When your Dad sleeps better it will also allow you to get better rest and help you to give him the best care you can. Hang in there. Boots.
 

anne

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Hi JMH: I am sorry to hear about your dad. He is very lucky to have you and your sister take care of him. My mom has been diagnosed with motorneuron disease with bulbar like symptoms. My brother has moved back home to be with her. I was wondering what the name of the patch that your dad is on for his phlegm. I am not sure if your father has a excessive saliva build up but we are dealing with that right now. Medications don't seem to really help.

I will keep you and your family in my prayers. Anne
 

JMH

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Boots and Anne

Thanks for the advice about the xanax Boots. I'll look into it. Dad is currently taking 7.5 mg of Zoplicone to help him sleep but it doesn't seem to be helping. His doctor said that if he was in pain a sleeping aid won't help. I was just looking up some info. on the net.

I found this site: www.alsofmi.org/pdf/als5_Treatment.pdf

It may be helpful as it lists a lot of different meds used to treat symptoms of ALS.

The medication they gave my dad is actually given for nausea (scopalomine patch). Hope I spelled it right. It supposedly dries up excess saliva. We were afraid to use it because someone in the forum mentioned that the upside of having excess saliva is that it may help the patient to swallow food better.

Not sure what to think now.

Take care.
JMH
 
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emjoi

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My father is in a slighty further state. He's feeding on a tube.
But he recently spent a week in hospital trying to find a combination of drugs that would dry up his mouth. Too many choking episodes. The docs came up with a cocktail of drugs, including morphine to relax him a little. But still he has regular bad moments. Scary as hell.

A nurse taught my mother how to use a swab and a small toothbrush to clear collected saliva out of the back of his throat. God things are getting extreme. Getting beyond weakness and loss of speech.
 

anne

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Thanks for the info JMH. I take it the patch that your dad is on is probably the same that my mom is on now. It is used for motion sickness. It helps somewhat but not a great deal. Not sure that it helps with the swallowing because my mom has great difficulty swallowing. This is very much a very frustrating disease. God Bless. Anne
 

Lillie

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emjoi -

Do you have a suction machine for your dad? We have one for my husband and use yanquer suction catheters to suction out excess saliva - works like a charm.
 

emjoi

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Lillie said:
emjoi -

Do you have a suction machine for your dad? We have one for my husband and use yanquer suction catheters to suction out excess saliva - works like a charm.
That's actually a pretty good idea. I'll suggest that to mum.
 

CNA

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My ALS patient is also having excess saliva and mucas problems. We have just gotten a suction tube machine (don't know exact name of equipment), but her mucas is too thick for it. We must use the green sponges to swap her mouth out. Her Dr put on on, hyoscyamine, which helped alot the first 2 weeks, but now is not helping much at all.

Yesterday, before I arrived at 9pm, her throat swelled "like a frogs" and got cherry red. She became very pale. Her family called hospice in. The RN thinks its that pill that is drying her out too much, which I find hard to believe. I'm not sure what it was at all, but I sense the end is coming.

I'll have to look up this patch you are mentioning.
 
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JMH

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Re: Suction machine

Lillie said:
emjoi -

Do you have a suction machine for your dad? We have one for my husband and use yanquer suction catheters to suction out excess saliva - works like a charm.
Will definately look into this for Dad. I'm due back at the end of this weekend. It sounds like the answer to a prayer. Is it uncomfortable for the patient? My dad has a very strong gag reflex....wondering how he'd deal with it. Am going to look it up to see if I can find it on the net. Thanks so much!
JMH
 

Beebe

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Hello JMH

Hi there, I was surprised to see oxycontin as a drug prescribed for an ALS patient. I'm not a Doctor but I think you should look up the side effects. May be why your Dad is weaker and tired. My very best to you , Beebe
 

TBear

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Uxpatch
We used to use and over-the-counter motion sickness medication called Transderm-V to reduce saliva production. It's a patch that contains scopalomine. Our Neurologist suggested it and it worked.
T.
 

JMH

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Oxycontin for ALS

Beebe said:
Hi there, I was surprised to see oxycontin as a drug prescribed for an ALS patient. I'm not a Doctor but I think you should look up the side effects. May be why your Dad is weaker and tired. My very best to you , Beebe
Jeez, this is so scary. I wondered about the side effects of oxycontin when I read them. The ALS society wants to see dad in the city but my sisters think the trip would be too difficult for him. The drugs that the GP gives are exactly why I think he should go. I think the ALS team would benefit him a lot more. Feels like I'm in a power struggle sometimes to get dad looked after properly and that is so sad. If anyone has any ideas on how to deal with conflicting opinions in care givers I could sure use some help. The situation is getting desperate.
JMH
 

Al

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I agree with you JMH. Most GP's have no idea what an ALS patient needs. I am my GP's first and only patient with ALS. I go to the clinic for meds because they see 30 patients in a day.That gives them a whole lot more input into what we are going through and what works. You tell the GP you have a pain and he gives you what he gives everyone else which may not be good for us. It's not his fault because this is a very complex disease and needs a specialist. Does your GP have the Physicians Manual for ALS Patients from the ALS Society? That would at least help him make some decisions. AL.
 

JMH

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Thanks Al........am going to speak to Dad's GP this week. Will ask him about the manual.
I'm still trying to get dad to go see the ALS team at the Deer Lodge facility in Winnipeg. He's got a pressure sore on his tail bone and can't sit for the 3 1/2 hour drive if I CAN convince him. Think the GP would order up an ambulance with a comfy bed for the trip?
JMH
 
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