Advice Needed

[Maritimer]

Hi,

I'm new to this board. I have been reading a lot of the posts looking for as much information as I can get on ALS.

My father-in-law was diagnosed with ALS in July 2004. He seems to be progressing very quickly. He's currently in a wheelchair and the ALS Society has also provided a hospital bed for home already. He cannot walk on his own, his arms are very weak and has really bad leg cramping and twitching . He is also having a lot of problems with his lung. He's not sleeping at all at night (only an hour or two at a time) and has alot of trouble breathing while he's laying flat.

Has anyone else experienced the breathing problems so quickly? He's starting Rizoule (not sure of spelling) this week and I'm wondering about the effects of Rizoule with other people.

Any information will help.

The board is wonderful. While reading through the posts it looks like there is a really strong support system here.
Thanks so much,

 

[Al]

Hi Maritimer. I was diagnosed in Oct 2003 and have started having the same breathing problems in the last month. Your father-in-law does seem to be progressing rather rapidly. Quite often this disease will hit plateaus where nothing will happen for a few months and then you will notice some more decline. Hopefully he will level off soon. Have you tried propping the bed up higher at the head. This helps some people. I find that the best sleeping position for me is on my right side with my head on a large pillow and some support such as another pillow between my knees. They are getting boney as well as my feet and it helps to not have them grinding together. The sleeping can be a problem because with the decrease in the lung muscle and diaphram structure he will have decreased respirations and with a sleeping pill or that type of meds they are afraid to decrease his breathing anymore. If he tries to sleep on his side and falls over on his back you can try sewing a tennis ball in the back of his Pyjamas. If he falls on his back this will wake him and he can turn back over. He can also be propped up from the back with extra pillows. Probably the best idea if he is weak in the arms and has trouble pushing himself up.
Riluzole is generally not much of a problem with most people. I get some indigestion and dry mouth from it although that could be a combination of the other drugs I take. Some of the others on the board take Baclofen for the muscle twitching and cramping but I don't so can't help with that one. I hope this helps and welcome to the group.

 

[TBear]

Hi Maritimer:

Your father-in-law does sound as if he's progressing quickly and hopefully he does level off soon. In the mean time, as Al has suggested you can get him elevated using wedged pillows as well. They seem to provide some relief, but you have to be careful if he's not very mobile as it can generate some pressure points at the lower back that can breakthrough.

I know that several PALS don't like them but as a suggestion, he may be a candidate for a bipap machine to help with the sleeping.

We used Baclofen for the fasiculations and modified the dosage as they progressed.

Good luck to you and your father in law and welcome to our tiny but robust crew.

T.

 

[Maritimer]

Hi,

Thank you for responding. My Mother-in-law has tried elevating his bed and it doesn't seem to be working.

He does seem to be progressing quite rapidly. He has so many factors going against him. In August 2003 he had his left lung removed due to cancer and he won the battle, he has heart trouble and he has diabetes. In April/June 2004 his leg started dragging and they were checking him to see if he had a stroke; however, after many, many tests, he was diagnosed with ALS. I have so much respect for him and my mother-in-law. I know he's uncomfortable all the time with the leg twitching and no sleep and when we go to visit him and my mom-in-law he's always smiling and talking to our children.

I can't imagine the emotions that my in-laws are going through. My mom-in-law calls me quite often and she's so frustrated. Currently she is his only caregiver and it's starting to take its toll on her. Her main concern is to keep him comfortable and nothing seems to be helping. I really wish that she had the internet. I was telling her that I've joined the ALS Forum and that there is a lot of helpful information and helpful posters. This is what she needs. People who can really understand what each of them are going through. I'm trying and with the help of this board I'm hoping I'll be better able to help her out.

Thanks again,

 

[Snowbird]

Sleeping

My husband takes 2 Tylenol Arthritis tabs at night, plus 800 mg Vitamin E. They seem to really help him to sleep. He tried a hospital bed and hated it, so I still help him turn at night (usually 1-4 times), and we usually get some sleep. Sometimes I turn him and don't even remember. I know he needs me beside him. Sometimes pillows help, and sometimes they just get in the way.

He has no use of arms & hands, about 10% use of his legs, and we don't expect he will be walking much longer. Weakness, foot-dropping, falls, etc. have really frightened him. However, his spirits are good, and we try to have fun as best we can. He doesn't go out very much due to needing a wheelchair, which we don't mind helping with. -21' last night, and winter is just beginning!

By the way, we stopped the Vit E for about 10 days and his aches and pains returned. Now that he is taking it again, he is MUCH more comfortable.

Keep us posted, and best of luck! Family is SO important.

Snowbird*

 

[Al]

Hi snowbird. Is the Tylenol and Vit. E the only meds your husband takes. I take 400 of Vit. E but in the morning. Maybe I should be taking more and at night. As you can see by the time code here I don't sleep untill later in the wee hours of the morning. Usually get about 6 hours but not fully restful. I read your posting in the Caregiver section as well. I am not using any lifts as yet but Carol or TBear might be able to help with that one.

 

[Snowbird]

Yes, my husband is only taking Tylenol & 800 mg Vit E at night. In the morning her takes Tylenol & 400 mg Vit D (not sure if that helps), and he takes a blood pressure pill. I am trying to get him to take ground flax, but he won't.

We went to an acupuncturist who lectures at the university, and he was very interested in the case and even wondered about upping the dose of Vit E. He referred us to a colleague who is a Naturopathic doctor, and he also does acupuncture. I will let you know how that appt goes next week.

Last year my husband had chemo for a very rare form of mantle cell lymphoma. The specialists do not seem to know if the 2 conditions are related. He has another CT scan tomorrow. Last year we had over 80 appts. No wonder I was tired!

 

[me]

snowbird - you mentioned trying to get your husband to take ground flax. I have started using it in my cooking. It can be put in things like pumpkin pie, cereal etc. Melissa

 

[Snowbird]

Hi ME!

You're right, but sadly I am not a baker. I use ground flax all the time on cereal, pudding, ice-cream, etc. My mom makes us super bran muffins with flax, all kinds of fruit, shredded carrots, cranberries, etc., and they disappear far too quickly. They are SOoooooooooo good!

 

[sisterofl]

Hi Maritimer,

Welcome to this board. My brother has the same problems your father-in-law is experiencing. We have put a really long pillow under his knees at night (he sleeps in a hospital bed, with the head elevated with one pillow). So his knees are slightly bent and it has helped him tremendously.

There is also a round long pillow(somewhat hard) at the bottom of the bed so that he can push up against it (as much as his leg strength will allow which is not much) while I go behind the head of the bed and grab him under his armpit and pull him up to a comfortable position.

Moira (dearest friend) and other caregiver (we share) has discovered that the pillow under the knees helped, as well we elevate the bottom of the bed somewhat until he tells us it's ok.

Currently brother is not on any medication. He's taken tylenol (crushed in his food) a couple of weeks ago because he was complaining of pain in his diaphragm. It ended up not being his diaphragm but his lungs...the palliative care doctor has been to see him (she now will come regularly once a week). She prescribed antibiotics because she was afraid it was perhaps the start of pneumonia...It ended up not being bacterial but viral, so it will probably subside on its own, however she believes that the antibiotics prevented it from become bacterial... My brother still coughs a bit (very faintly) though. He says he is still in pain but not as much.

Sorry for the long post, but feel free to send me a PM or e-mail me if you want at [email protected]


Snowbird, we use flax seed oil and that works well.

Take care

Gisele

G

 

[mannco74]

advise

As with the others i hAve been there. where is fAther in lAw's closest Als clinic? i remember hAving to sleep on side till shoulders got to weAk. only thing which worked for me wAs bi-pAp.

tAkes A bit of getting used to but Allows him to sleep on bAck in comfort. dont know where i would be without it. see if Als hAs sheep skin for mAttress And get perscrip from clinc for zopiclone, does not Affect breAthing And puts me to sleep. ok, hAv even chAnged browzers And removed cAps using one finger And mouse.. this site is not very Accessible for people with disAbilities At times