Can't sleep

[Glenda Green]

My son is 34 and has als. he is practically bed ridden. he can't sleep at night because of cramps and discomfort. what suggestions does anyone have that might help him?

 

[rcharlton]

Hi Glenda

I created a new thread for you.

Sorry to hear about your son.

Have you spoken with his Doctor about the cramping? He/she might be able to prescribe something.

What kind of mattress is your son sleeping on? Many people prefer memory foam mattresses. Hospital beds are also available with air mattresses with adjustable cushioning. Some people find it more comfortable to sleep in reclining chairs.

Is your son on a bipap machine to help him breathe? Breathing issues may be contributing to sleepless nights.

Good luck

 

[SueG]

Baclofen and ambien make all the difference for me.

 

[marypat]

If I'm cold the cramps and spasms are so much worse. I use microwave heat packs and heating pads that have automatic shut offs on them. And it is very important that they shut off because you can get a nasty burn if they don't. I did before als so I am extremely careful now. A warm bath or shower before bed is great but not often an option. Also using pillows to position limbs can help

 

[kmendsley]

Air mattress works well but also support around the body with pillows. Also, leg cramps at night can be helped by taking a hot bath or shower before bed and massaging the legs a little bit before he goes to bed. Seems to help circulate the blood and reduces the pain quite a bit. Good luck to you and your son!

 

[hjlindley]

I use a self of timed heating pad for cramps, but tizanidine, Lunesta and xanax get me a full night's sleep. We have a memory foam topper that helps. Good luck. Definitely talk to the neuro..every drug has its use and its side efffects.

 

[Glenda Green]

Hi Glenda

I created a new thread for you.

Sorry to hear about your son.

Have you spoken with his Doctor about the cramping? He/she might be able to prescribe something.

What kind of mattress is your son sleeping on? Many people prefer memory foam mattresses. Hospital beds are also available with air mattresses with adjustable cushioning. Some people find it more comfortable to sleep in reclining chairs.

Is your son on a bipap machine to help him breathe? Breathing issues may be contributing to sleepless nights.

Good luck

Im going to be really honest with you. When I saw in your post that you had had ALS since 2005 I shuttered. I can't imagine my son living 5 or six more years in the condition that he is in now. Maybe he has progressed faster than others. It kills me to think that he would continue as he is now for another minute.

 

[Toto's Dorothy]

Glenda,
I don't know all the circumstances concerning your son and his health, but I and many others here are living with ALS. I still have 2 young children at home and every day is a blessing. I am a quad and have been since November. I thank GOD he allowed me to see 1 daughter marry last year. 1 to graduate as valedictorian and another daughter to get married this fall. I have 3 beautiful grandchildren from my oldest son.

I do not sleep but a few hours a day. When I was recently in the nursing home, there were weeks I didn't sleep. You may want to ask your sons neurologist for a prescription. You may also want some anxiety medications for yourself. That may make you have a different perspective on things.

 

[trfogey]

Im going to be really honest with you. When I saw in your post that you had had ALS since 2005 I shuttered. I can't imagine my son living 5 or six more years in the condition that he is in now. Maybe he has progressed faster than others. It kills me to think that he would continue as he is now for another minute.

I'm going to be really honest with you -- what kind of mother would wish her son dead, rather than physically disabled. And what kind of callous human being would tell another disabled person that the thought of her son living as long as that person has with ALS made her "shutter"?

By the way, the word you meant to use there was "shudder". Windows and cameras have shutters, not human beings. The closest thing to shutters that the human body has is eyelids, and you seem to have sewed yours shut with regard to providing any kind of vision of a meaningful future for your son. Maybe "shuttered" was appropriate after all.

Maybe you'll get lucky and he'll be one of the ones that go quickly to balance the longevity scales for the longer-lived ones like rcharlton and me. I don't imagine that you can bear to think of him living even as long as I have after diagnosis.

And, for the record, I am also a quadriplegic and typed this message to you using movements of my head to control a reflective dot on the bridge of my eyeglasses. A special webcam tracks the dot on my eyeglasses and moves the onscreen mouse pointer appropriately. Other software allows me to click the mouse buttons and to "type" my messages, making this truly a "Look, ma, no hands" effort. All of which shows that someone in your son's condition can still have a fulfilling life if the people around him care enough to help him get the tools he needs to get started.

How much do you care?

 

[LizT]

No crap! My fiance was a quad and on a vent for damn near 7-8 years. Lived 10 years with it. Was on a vent with a trache. Him and I met, fell in love, got engaged, and began to plan our lives together. Who are you to decide his life wouldnt be worth living that way? I met my fiance AFTER he had NO movement, NO speech, NOTHING but eye movement. How dare you?
And in case youre wondering why Im so damn upset- its because 4 days ago my fiance died. How? At the hands of his mother.
I will pray for your son.

 

[Toto's Dorothy]

Thank you Tr and Liz. As much as my fur was ruffled this morning, I couldn't do it. I would have started and just lost it!

Glenda (As for any of my Wizard of Oz fans, Glinda is the good witch, not Glenda.),
You need to look outside the bed. Right now, I am stuck in it only awaiting my pwc. Once that arrives, I may no longer use it. Find an ALSA and get help. Help your son LIVE with ALS. We are all living proof it can be done.

After reading the responses, you may want to run and hide and not come back on. Don't. Come back and see and learn what is available for your son.

 

[Ms. Pie]

Glenda, Why on earth are you so negative? Your son is still living. You see him as dying. If you think like that have you considered that you are dying too? We begin dying at our first breath if we think like you. Have a heart and help your son have a good life in what he has left. Stop being so negative! We all are trying to make the best of life and I for one am very happy and feel blessed by God! Do not try to make people as miserable as you are for Heaven's sake!

 

[kiwisally]

Im going to be really honest with you. When I saw in your post that you had had ALS since 2005 I shuttered. I can't imagine my son living 5 or six more years in the condition that he is in now. Maybe he has progressed faster than others. It kills me to think that he would continue as he is now for another minute.

Glenda, I have been trying to make some sense out of your post. I'm finding it hard work. Giving you the benefit of doubt I come to the conclusion you are understandably in pain and simply choose your words unmercifully and until you confirm otherwise I'll continue to think that as the lesser of several evils. I think you can see (from the responses you've got) that there are many people here with ALS or those that love someone with ALS who lived and are living their lives to the full despite what seems to some overwhelming disability. When someone appears to put so little value in the life of someone in similar circumstances, especially their own son, as you have, it causes upset on a number of levels. From what I can read I know very very little about your son or yourself and that is a shame. Maybe if you were to share a bit more, become a bit more involved on the forum you might find help for both him and yourself and realize that there is more than can be done for him to improve his life, more you could do to help him in what surely is a most difficult time. I know that is what I would try and do for my son and what my son has done for me rather than just wish my life away out of despair. I hope for your sake and that of your son you find the courage to help him further.

 

[marypat]

well said kiwi, very understanding. there alot of people where u r glenda and they find hope, comfort and peace here. good luck

 

[Toto's Dorothy]

Is it me or does this person remind you of someone else. Posts a statement to get us riled up and then doesn't come back to respond? I pray not, hoping its a coincidence.