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Samantha01

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Jul 6, 2008
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Friend was DX
Country
UK
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Greater London
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London
Hi, I wondered if anyone could help? My husband was diagnosed with ALS in October and has rapidly deteriorated. Sadly he has also suffered a rare type of dementia related to ALS/MND. The problem is that he has not been able to sleep at night for some time now. He is constantly calling out and groaning, but this seems more anxiety related than pain related. He has been into hospital recently to get to the bottom of this, but everyone seems really puzzled by this symptom not usually related to ALS?
Does anyone else know of anything similar. My husband is not able to communicate in any way due to lack of speech and the dementia I mentioned and I really want to help. We have three small children and the house is getting chaotic at night - everyone is worn out!
Any advice would be really appreciated.
 

Jennifer51

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Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Hi. sorry you are here..where in London are you, I am in Woodford Green, Central Line.
I sympathise with your situation. I have bulbar and no speech left, and I have growing issues with mobility. My husband has to help me to try to settle in bed now as it is now very difficult for me to move around in bed For some time now I have been geting pains in my arm muscles, not cramp but very sore. I know I groan when in bed as it is very hard to get comfortable, and whilst I comunicate with a computer during the day, it is so much harder at night and in the dark when I cant even write on paper. The other thing that makes sleep more difficult for me is that you have time to think and get upset with this dreadful disease and all the implications, there is a lot to dwell on in the long hours. I also worry about what the next day will bring..what else will I loose tomorrow. Then there is the huge upset about missing out on my families life and not being there for them..it does not help that I was alsways a BIT of a control freak. Then off course you want to get to sleep in the hope that you will wake up in the morning and find out it was all a bleeping nightmare.
Please feel free to contact me via email......ournewemail at googlemail.com
 

Samantha01

New member
Joined
Jul 6, 2008
Messages
5
Reason
Friend was DX
Country
UK
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Greater London
City
London
Thanks Jennifer51! I am only down the road from you on the border of walthamstow/leyton.
I felt that fear was one of the reasons that my husband was having such difficulty, but everyone else seemed to think that pumping him full of morphine was the answer - only it didn't help and he still calls out... He has never been one for computers or gadgets and really couldn't manage to learn anything new now, so it is so extremely difficult for him. He was always a bit of a control freak too and not having him organize me has been very strange over the last couple of months. I wish that there was something I could do for him, but this has taken over our lives before we've had a chance to catch a breath so I'm at a loss and so are the so called professionals!
Do you have any medication for the soreness as I do think that his arms are quite tender now that they are locked into position - physio round here has been basically non-existent!
Couldn't quite catch your email by the way.
Thanks again it really helps!
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
I take baclofen for stiffness, and that is a long story, build it up gradually seems to be the best option..neuro gave me 60 mg per day which was way too high, then I dropped to 10mg per day and now take 20 mg per day and try to drink lots of scheppes indian tonic water, which also helps with a lot of pain, but my arms are still sore. My physio at wanstead hospital wrote for an appointment at whipps for some splints to help with my feet and hands and was horrified when I saw here the other day, that she requested an appointment in December and we have not got one until Easter..she was going to ring them and say it was urgent..anyway, please email me..I wrote it kinda odd so it would go thru without delay which a full email would. So it is

OURNEWEMAIL then the AT sign GOOGLEMAIL.COM

If you contact me we can compare notes as to what we are getting locally. I am going for everything I can get if it will help and so far I am pretty happy with the help I have been given
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Jennifer51
I just read your post and wanted to ask you about the tonic water. Is it just carbonated water? Here in the USA we buy flavored seltzers by Polaner that come in 12 packs. They are VERY good and Rick, my PALS drinks a couple a day. His favorite is the mandarin orange. They have no calories, no salt, no nothing but flavored carbonated water. I am interested to understand how they could help with pain. They make us burp! Would you have anything to tell us on the subject?

I am so sorry to hear about the night fears. Rick does sleep pretty soundly with his bipap machine.

Thanks. Marjorie
 

Jennifer51

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Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Marjorie...we have owned several homes in florida for the past 20 years and spend up to 6 months living there..or we did until this struck...so I know what the seltzer is as one of our friends drinks it. What I am talking about and has been spoken of before on this forum...is Schweppes indian tonic..as it contains Quinine, a drug doctors might give you for pain and cramp...it should not be any cheap copy as they mostly contain quinine flavor..the schweppes is the only one we found that HAS quinine. I hate the taste so add it to squash...cordial or fruit juice. I have to drink lots as I have kidney problems, and it saves taking more pills which is now much more difficult.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Samantha01 ... I'm so sorry for your situation, and your husband's illnesses.

Some time ago, after my symptoms started but before I was diagnosed, I started getting "night terrors," of unbelievably horrible nature ... my husband being tortured, etc. I would wake up with my heart pounding, and it wouldn't stop racing for up to a half hour. I was given a Xanax in the hospital before sleep, and it stopped those dreams and the physical effects, so I asked the doctor for a prescription, and am still taking one before bed.

I don't know if this would help, but it helped me.

God bless.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Thanks, Jennifer51. Rick doesn't have any pain so I guess we won't be looking for the Schweppes kind of tonic water. Appreciate your coming back to answer me.
 

Samantha01

New member
Joined
Jul 6, 2008
Messages
5
Reason
Friend was DX
Country
UK
State
Greater London
City
London
Thanks everyone

Samantha01 ... I'm so sorry for your situation, and your husband's illnesses.

Some time ago, after my symptoms started but before I was diagnosed, I started getting "night terrors," of unbelievably horrible nature ... my husband being tortured, etc. I would wake up with my heart pounding, and it wouldn't stop racing for up to a half hour. I was given a Xanax in the hospital before sleep, and it stopped those dreams and the physical effects, so I asked the doctor for a prescription, and am still taking one before bed.

I don't know if this would help, but it helped me.

God bless.

This sounds like it could be similar as he is sleeping for very short periods before hand and as pain killers or Baclofen aren't doing anything I'll mention it to his nurse tomorrow - thank you so much and God bless you too xx
 
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