Question Open Tightness

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wewillbeatthis

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Hello Everyone

Well dad's speech has gotten much better and just about back to nornall over the last few days.... I should say once the stess and cold has gone and things are back to normal... Strange how this effects him in that way...Good news so we let it be and thank GOD....

Now for the last week or so something has come up that I do believe happend awhile back when this all came about. Please explain what you all think this is and if you have any idea how to relieve it or exercises to ease it.

When he is sitting, driving, or even when he wakes in the morning. He has this spot on the back of his right hamstring that is stiff and has a knot. If he touches it he feels the pain. Otherwise when he is in one of the above resting positions and then gets up to walk it is very stiff and he has to wait bit before moving and then he knows the knot is still present but only hurts when he touches it....

We are trying to get him to take some advil and heat it for he may have streched something to hard or even pulled something. However does anyone else have this and coud it be from the ALS and we should tell the doctor?

Jen
 

Al

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Hi Jen. Is your dad taking anything like Quinine or Baclofen for stiff muscles or spasm's? When I was first diagnosed I got wicked cramps in my thighs and ham strings. I would get them at night mostly but sometimes in the day as well. Supposedly it's part of the NORMAL? progression of the disease. But as you see reading here some of us get them some dom't. The Baclofen didn't work all that well for me but the Quinine at 300mg at bedtime seems to help. I haven't been getting night time cramps for quite a while but I did get the ham string one a couple of weeks ago sitting for a while at the computer. Now, there are those that would surmise that the decline in muscle structure would make for less cramping. ie: you can't cramp what you don't have. Who knows?
I just keep on taking it one day at a time. I woke up today so it must be a good day. I've got a wicked pain in my knee and haven't bumped it but I've had it before so it's off to the doctor at 5 for some anti inflammatories. Fun Wow. Have a nice day.
Al.
 

wewillbeatthis

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Hello Al,

Thanks for the response... Sorry that your knee is bothering you. Hope that the doc was able to give you something.. Does reg. Advil not work or is this something that should not be taken?

Dad has been taking Baclofen twice a day now for about 6 months now... I believe it is 50mg in the am and 50mg in the pm. Then he takes the Rilutek same 50 am and 50 pm... Then the normal vitmans.

The stange thing is that when he takes the advil it is fine and he walks better.... Stange...

This has been going on for a few weeks now on and off and he feels that he pulled something.

This whole thing is so stange.. Days when he does not want to get out of the car and does not speak without a slur and then those that he is out and about in and out of the stores like a teenager of course with the stange walk but that is it and speaking 100% fine. this is what has me confused. How is it that a month wil go by and everything is great and then you have a week of so so and then back to great again... Is this how it works for you as well Al?
 

Al

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Hi Jen. Firstly the pain in the knee is arthritis and he reminded me I had it about a year or so ago. I was at the motorcycle show on Sat. and walked for a few hours without resting. Some anti inflammatories should fix me up in a few days I hope. I tried Tylenol in the middle of the night last night and it just barely helped. Haven't had any docs say not to take advil. If it seems to help your dad I'd probably take one a day just like the low dose aspirin. I wouldn't think it would do any harm. Probably should bounce it off one of the docs though.
I think it works a bit similar with me. I just went through a bad hand period as I call it. The hands just kept getting scrawnier and less useful. This week so far they seem better. Just as an aside. I started back on the Rilutek(Riluzole) last week. I quit a few months ago because I wasn't sure it was doing any goodand had a few side effects. I noticed that I have slid a bit downhill but it could be the stress of the move or something else. So I'm back on it hoping I'll plateau again. So that's me for another day. Take care and wish your dad the best from me.
 

wewillbeatthis

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Hello Al,

I will send that hello and once we are all under one roof I will introduce dad to this page so he can speak to others that are going through this.

He took two advil yesterday and he said that he woke up great today so he will take two more tonight and do this for a couple of days. And we will see what that does.

I am sorry to hear about your hand. I noticed that you indicated that this week they seem better. So you have these times that one week something is not working so well and then the next week it is better. Al do you think that the ALS is trying to do something to this limb but the medication, vitamins, body itself is fighting it and not allowing it and then the ALS just burns out and moves on to see what if it can destroy next? I just am not sure what to think of it....

If I remember correctly you were diagnosed over 5 years ago and it started in your hands correct?

When you are stressed,tired, or just on bad days your walk to off and you have to use a cane?

Jen
 

Al

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Hi Jen. Actually I was diagnosed in Oct. of 03 and had noticed fasciculations in my right calf first. They started in Dec. 02 0r Jan of 03. Not sure which. I was in the Philippines at the time and noticed my muscles jumping in my calf. Can't remember whether it was Dec. or Jan. For a month it probabably doesn't matter.
I'm not sure how it works. Some days it is a real chore to walk up stairs. Other days it's not so bad. I think stress has a lot to do with how tired I feel. I haven't had to use a cane yet but I sure get the penguin walk some days. I took one of the anti inflammatories last night and this morning most of the pain is gone. That Voltaren must be good stuff. Have a good day. Mine is starting off on a better note.
Al.
 

wewillbeatthis

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Al I am so glad that the doctor was able to give you something to help you to feel better....

I must say that today has not been a great day for me. Dad is running all over today going to this store, that store, the accountant, the job to check up on the men, and then he is trying to put together contracts for another job. He is speaking rather slow again today and therfore slurring.

I get so frustrated with this disease that I just get off the phone and cry, get mad at everyone around me and want to do nothing but be alone.

I wish I could do something to cure you all and get rid of this horrible disease for one and for all...

I try to learn and then what I learn does not match with what I see. For instance the limb onset is suppose to follow that and then move to different limbs. Then how is it that it has gone from the leg to the voice?
Any suggestions on things I can read to understand this part a bit more?

Jen
 

Al

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Hi Jen. Sorry that you are a bit down today. I can understand how your dad feels. I did a bit of painting touch ups today. Up and down a short ladder and now I am pooped. I am sure he feels he needs to do this work to feel useful. The occupational therapist came today. A new one because we moved. My wife was getting on my case because I didn't want any things like the toilet seat booster, grab rails for the tub and seat for the shower. The reason I don't want this stuff until the last minute is then I will have to admit I am handicapped. The longer you go on as if nothing is wrong the longer you can feel normal.
We know what is going on and have accepted it but that doesn't mean we have to admit we are handicapped. Sounds nutty but that's the way it is.
If you go to the home page of the ALS.ca there is a manual for living with ALS. If you have a printer you can download it. I think it is about 100 pages so have lots of paper handy. It is in PDF Format. I believe it can be opened and just read if you prefer. There is a lot of information in there about what happens and how to cope with it. Try that for information first. Hope tomorrow is a better day. Al.
 

A Daughters Love

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Hi Jen

I understand what you are saying about this disease being so confusing. I have read the ALS manual more times than I would like to count, and I'm still finding it difficult to understand my Mom's progression. She was told it was Limb set, but it started in her trunk. It has also already started to affect her coughing and sneezing.
I thought limbset was supposed to start in your legs or arms first, and take over that part of your body before your respitory system and voice. UHHHHHHH I hate this disease! I hope someone has an answer to your question, because I would love to hear it as well.
 

wewillbeatthis

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Michele,

I too hate this disease... I always thought that limb onset was in fact in a limb.. I am not certain why it would now be effecting the coughing and sneezing of your mom. Have you told that doctor about this? See for me I have to be carful what I say cause dad is at the point where he ignores it and does not even hear himsef speak slow or slur certain words... But even this took some time for him to reaize that there was a problem....

I just hope to GOD that a way to stop this progression is found very soon and to follow a cure.

Where are you from? How old is your mom? When was she diagnosed?

Jen
 

A Daughters Love

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Hi Jen,
I am a Canadian. My Mom was diagnosed this past Aug. At that time she could walk on her own, unassisted, but just had a really weak back. She now uses a walker at all times, a wheelchair for long outings and is now living with my husband, myself and your 1 and 4 yr old boys. She can no longer manage living alone as most routine things are imposible for her to do. Like cook, laundry, make her bed etc... I even have to do her hair for her as she is to weak to hold her hands up to do it. From what I am told she is not a slow progressor. The unknown of this disease is driving me crazy! She has said she does not want any assistive divices to prolong her life, and i will respect her wishes. I am very afraid of the fact that it has started to affect her respiratory system. I pray that God will give us all strength to get through this everyday. As I know that is the only thing that is going to get me through.

When was your Dad diagnosed? Is he still living on his own?
 

wewillbeatthis

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Hi Michele,

:cry: I'm sorry that you are going through all of this...

Please feel free to e-mail and we can chat that way as well.

My dad started with the foot and walking problem back in 1/2003 then it started to get worse and worse... 2004 he began to have falls and in 2005 he had to use the can. Now he is still using the cane everyday and even in the house with the exception the the occ. walking in the house with no cane... He lives alone my parents are divorced...

Dad can still do everything he always did just much slower, he gets frustrated cause he is slow, and his ego gets in the way... It seems to have just been in his feet and legs with the occ. slow speaking and slurring. However, when he is strssed, tired, just not in a great mood and has been speaking a great deal he begins to really speak slow and 1 word a sentance is a little slurred not slurred more like he has marbels in his mouth... On these days he gets the cracking voice and the need to clear his throat.

Dad is moving in us myself and my husband to be this spring... We are excited and really it is more for company cause I do believe that this is all mind over matter and when he is alone and down this is when things get not so great. When he is with people and has stuff to look foward to he is doing real well.... With this being said we Thank God that he is doing all and all well...

IT is great that you mom has your kids around her. What types of things does she do to keep her mind off of things? Have fun?
 
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