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wewillbeatthis

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Hello everyone,

I am sorry for not getting in touch for awhile. I have been doing some home searching so that dad can come live with us... At this time he gets around fine on his own. However, he is lonely and this hurts me so we are going to have him live with us...

I wanted to ask a couple of questions. It seems that when dad has something coming up that is going to involve walking, seeing, and being around many people he gets really bad. We notice he walks very slow and really bad, he does not trust walking without someone holding onto him even though he does this on his own every day, he dances on carpet but will not go onto tile floor, he slurs a bit, then a couple days later he is back to the bad gait but everything else is normal. What is all this and why does it happen? Anyone else experience this?

Also another thing at a party the other night he was so proud that he danced that he started to cry he just let it all out everything that has been bothering him... He cried and cried to the point that he made himself fall right on his ass... He was really sad and I too was crying... Do any of you have days like this?

Ok last thing I swear... dad has been mentioning that when he sits for a long period of time and then gets up he has a slight pain in his right hip and it is very stiff... A few minutes later the pain is gone and once he starts to move he is fine... Sound familer?

I hope everyone is doing well. This cold weather seems to make everyone stiffer and slower....

Jen :x :roll: :(
 

hope

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Oct 1, 2005
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Jen, I have days like this. My wife and I have cried and cried also. Sometimes it becomes so overwhelming. The nightmare of what we are in that you just break down. I understand completely what you are saying and my heart goes out to you. The emotional pain in this illness hurts so much. Today my wife is not doing well, she has days where she cannot accept this illness that I have. She trys so hard not to show the sadness and pain she is in, but when you love someone you cannot help but cry.

hope.
 

Al

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Hi Jen. Your dad is just going through the normal ? progression of the disease. Emotions can be overwhelming at times. Sometimes we can't shut off what is inside and it comes spilling out. We don't know when it will happen but some sensory thing will set it off. Maybe a song or seeing someone or something someone says will bring all the emotions to the surface. Laughing and crying are well documented in ALS and just another of the fun things about it. Stress can also make you feel worse and show worse symptoms.
The stiffness can be from deterioration of the muscle in the upper leg or butt. Not as much padding as we used to have. I used to joke that my a-s was the first thing to fall off when I started to notice the atrophy in my muscles. Hope this helps to answer some of your questions. Al.
 

rcharlton

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I think PALS all try and keep up a brave face at all times - often for the benefit of those around them - but there is a lot of stress building up behind that facade that has to be let out at some point.

For example....

Just received a 4th opinion a couple of days again. Saw this ALS specialist in August. He noted I had a couple of uncommon ALS symptoms and wanted to do some more tests before he was prepared to say that ALS was the most likely candidate. At that time I had pretty much accepted the diagnosis, but this gave me some hope that we might be dealing with something else. So leading up to Tuesday I really started believing that he would tell me that it wasn't ALS. I imagined him greeting us with a big smile saying "Great news!". I even held off buying a new round of supplements till after the appointment thinking I would no longer need them; however, instead of the "great news" I was hoping for - I got the "Unfortunately it looks like ALS".

My partner and I did a pretty good job about keeping a stiff upper lip during the appointment - and even managed to remain pretty positive for the rest of the day - until that night when we had an argument relating to - of all things - folding laundry.

The stress had been building up all day - she was in tears - and at one point the only thing I could do was let out a couple of primal screams - tore the hell out of my vocal cords...and scared our poor dogs - tail between their legs...luckily we quickly realized that it was our stress from the day's events that was really fuelling our argument...

Whew...

Al - sorry to hear about your fanny - have you thought about getting a butt augmentation?
 
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