Lost

[SonyaS]

I am new to this. My friend was diagnosed with Bulbar ALS in April 2009. I am his primary caregiver. He just got a PEG a month ago. He is mobile but getting sleep is his main problem right now...he is exhausted and has no energy due to the lack of sleep I think. Has trouble turning over in his clothing. ANY experience, strength and hope would be appreciated. I am lost and saddened and want to do the BEST for him and his care and comfort and outlook! This is so difficult and emotional....

 

[Twinsmom]

Dear Sonya,
I am sorry for you and your friend. Regarding the sleep challenge, I would ask his doctor if he's a candidate for either a prescribed medication such as ambien, or some of the herbal supplements like valerian root or melatonin. I'm not as familiar with Bulbar ALS, and wouldn't want to give you bad information, but I do know my husband was prescribed ambien to help him with his sleep, because his fasciculations are sometimes so strong at night, he can't sleep.

Peace & Prayers to you,

 

[SonyaS]

Thank you Melody. It such a blessing knowing I'm not alone and others' are facing similar things. I thank you for your response.

 

[Twinsmom]

I know I'm still struggling with understanding/accepting all that this disease means. I hadn't seen anyone else who seems "new" to the journey. I know how scared, confused and overwhelmed I am often...trying to know how to "live with ALS" and not "die from ALS", and not feel so lost as well.

Peace to you.
Happy Thanksgiving-
Melody

 

[Ellamay]

sonyas,

One thing that might help your husband in bed are Satin Sheets. You'll be amazed at the ease that you can move in bed. We used them for my husband till he went into the hospital. he asked me for a Satin type shirt to help him move too ... Cotton sticks and is hard to move. Although I recommend using cotton pillow cases or you will lose the pillows they will slide right off

Sleep is still a challenge for Tony but we found that Amitriptaline 75mls and his dr wouldn't prescribe sleep aids but he did recommend Melatonin. So we used both of those and it seemed to assist with with going to sleep.

 

[Katie C]

We've had success with Glen using Melatonin and warm milk right before bed. After a while, as his anxiety increased, his doctor prescribed temazepam at bedtime, and he still has his warm milk. Also, I believe his bipap is helping him get more restful sleep.

 

[BethU]

Sonya ... in addition to a lack of sleep, he may be exhausted from difficulty breathing. Our diaphragms (which work the lungs) weaken, and it drains energy trying to pump the lungs. As Katie said, a BiPap machine may help ... they work the lungs, and rest the diaphragm, but they are sometimes hard to adjust to while sleeping, but he might start out using one during the day and get some periods of breathing that don't use up energy.

I know sleep is a critical element for me, and I take Ambien CR (against my pulmo's advice, as he says it can interfere with breathing). For me, sleep is more important than breathing at the moment. There are other meds that might help as well.

It is an insanely hard disease to care for. Bless you for being there for your friend.

 

[indigosd]

My Husband was diagnosed with Bulbar onset July 09 and is scheduled for his PEG 15 December. He is on Ambien CR at night and also Robinal to help dry up his secretions. Paxil 20 mg to help with anxiety and depression. I am certain that BiPAP is just around the corner. NONE of this was offerred to him. I have had to fight tooth and nail for all of his treatment! Let me clarify, only had to demand assistance from the ALS Neurologist and ALS Clinic. We now work with our family Dr. I discuss my concerns, what I think that he may need next and our Dr. then follows through for us! Switching Dr.'s has been the answer for us and significantly reduced our stress. The only issue is that we are the first PALS he has ever followed. :] I printed off the guidelines from the ALS Association site under the tab for HealthCare Providers and gave it to him to put in Web's chart. EXCELLENT information for CALS also. Knowledge gives you power and then you become a empowered CALS! My experience on this journey is that no one has taken us by the hand and made the journey easy. Research, arm yourself with knowledge, ask for what he needs, fire Health care professionals or agency's that do not help, join the ALS and MDA Associations, use the search engine for questions because 9 times out of 10 it has already been asked and answered, TAKE CARE OF YOURSELF so that you can take care of him. :] I thank God every day that I found this forum and I know that you will also. You are not alone. I have found such incredible advice, support and joyful laughter from the forum family. I spent most of my time in the beginning just using the search option and consistantly found answers to all of my questions. I hope that today will be easier for you and your PALS.

 

[BethU]

Terrific advice. Everyone should read that post.

 

[RoadKill]

I have gone from waking up about 50 times a night to about ten times a night, due to pain when moving (due to limited range of motion with my upper body) and due to weakness (which makes it very difficult to roll over or pull up the blankets). Things have helped me:

A BiPAP.

The pulmonologist at the ALS certified clinic gave me a five minute exam and said I was fine. My GP insisted I see someone else. (My GP has never had an ALS patient before but he is totally into learning as much as he can and helping me however he can.) I reluctantly went to the pulmonologist he recommended and learned that my breathing is severely impacted when I am reclining/lying down. I had a lengthy exam in his office -- blowing into tubes and sucking on tubes when standing, sitting, and lying down in various positions. Then he sent me for a sleep study wherein he gave me and the technician special instructions so that the ALS issues (breathing capacity in a recliner, breathing capacity on my back, and breathing capacity on my side) could be taken into account. So, I have a BiPAP and I have a love/hate relationship with it. It helps so I use it.

Also, this was pricey, but it helps: A good quality, adjustable heated mattress pad with a timer function. Mine was close to $175 (queen size) on sale. Now when the blankets get knocked off me in the middle of the night I don't wake up freezing and tense.

I am not a religious person but I truly believe you are doing God's work by helping your friend. I think we are here to help each other (but some people haven't figured that out yet). Thank you for looking out for your friend.

 

[stephie]

I have one more suggestion to add for more comfortable sleep. My husband used a body pillow to take the weight off of his shoulder. I would put him to bed on his side and rotate him just a little further toward the front so that he was leaning into the body pillow. He slept much better because he did not wake up with a sore shoulder, and he was also able to roll on to his back when he started the night on his side. Hope it helps!