Questions & Advice on things we have noticed

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wewillbeatthis

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Hello ALS Family,

Dad is moved in for the most part.. We have a few things to get from the old place but he had been living with us now for 5 days and so far so good....

Ok we have been observing certain things and would like to know if anyone else has or had this, seen or heard of it. If so what we can do or how we can ease it..

1. Dad's walking has been really bad and really slow the past week. Could it be the new house and that he is uneasy. He does not hold onto the wall all day but makes sure he walks along side of it. At night he will hold onto it... What does this mean, could it be that he needs a walker or something? Or can it just be that he needs to gets used to things and at night is tired and he needs the wall... He is nervous to walk on a certain part of the ground before he even gets to it. Could some of this be in his mind and he works himself up and then gets tighter?

2. His balence is not that great either the past couple of days. What can we do to help this? What types of exercise can we do with him to help this. He is not walking on anything but his tip toes...

3. Ok this is strange... Dad when he is really hungrey will eat or drink so fast that he will let out a couple of coughs.. The other day he had a coughing fit cause he was chewing his gum so fast that he almost swolled it. He was so hungrey that when we got in the car he grabed the Italian bread and ate half of it... He gobbled it... Never chocked but would have to let out a little cough drink some water and then would have to clear his throat... Then when he is not famished and eating reg. At a normal pace and not the pace of a person that has not eated in a month. This schocked me.. We were watching a funny movie, eating sausage, peppers, potatoes, and Italian bread, ginger ale and water. While this is going on we are all laughing unbelievble with full mouths. He was fine not a cough, gurgle all night.... So I guess it goes back to when we are tense an our muscles tighten up?

4. Ok this dad loves to cook, clean, go shopping.... Is it bad for him to be up on his feet all day... Could this hurt him worse? Of coruse since I was little by the time 10pm came dad was snoring on the sofa... This is what he does now... However, after sitting for a long periods on the sofa if his feet are not elevated he will get up very stiff and have to have someone help him up... What can we do to avoid him from getting stiff when sitting on the sofa?

This is long and for this I am sorry... If you would like to answer me please send me a private message.

However, it is fine to keep it on this for others may have the same questions or will and can use this as a reference...

Thanks in advance for your response.....

Jen
 
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David

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Jen,

Please don't think poorly of me .. I edited your post and switched out your email address and placed "Please private message me".

For all members, please avoid publicly posting your e-mail address... automated programs visit online forums such as these daily to harvest e-mail addresses and then send out unsolicited SPAM email.

If anyone would like to speak with Jen please feel free to send her a private message, if you'd like to exchange e-mail addresses we recommend doing so through private messages, not through the online publicly avaiable forum threads :)

I hope you understand, we're just trying to protect our members by being cautious :) An ounze of prevention ...
 
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hope

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My husband and I have only been in this for about eight months. I can make a suggestion. My suggestion would be that a walker might be a good idea. It would help him feel more secure, something to hold on with both hands. It sounds like he is unsure of himself when walking. The walker may help that.

He is living somewhere else now and that also is important for him to have to time to adjust to his new surrounds. It is important when he is unsteady to makes sure someone is there because falling would be the fear. Eating can be a hard time for some, I encourage my husband to eat slow and small bites. I tell him there is no rush, take your time. We do have laughter but we try not to do this when we are eating because it can cause problems if you have food in your mouth and start laughing. It is easier said than done sometimes because some of the funniest times in our lives are when we are sitting down to a meal. Meal time is when we all share our day and how it went and by doing that we share the good and the bad in that day. I know one day I dropped my husband's plate on the floor, he looked at me and said when did your als start? I did not know what to say he looked at me and smiled and smiled with him. Sometimes you just have to laugh even when it hurts. You are doing a wonderful job by the sound of things and you are so kind, this means everything. Hope I helped a little.

Sandy.
 

Mike27

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Hi Jen,
Here's my $.02 FWIW,

1. Dad's walking has been really bad and really slow the past week. Could it be the new house and that he is uneasy. He does not hold onto the wall all day but makes sure he walks along side of it. At night he will hold onto it... What does this mean, could it be that he needs a walker or something? Or can it just be that he needs to gets used to things and at night is tired and he needs the wall... He is nervous to walk on a certain part of the ground before he even gets to it. Could some of this be in his mind and he works himself up and then gets tighter?
He may be a little nervous as it is new surroundings and he probably is worried that he'll fall in front of you. For me, I do fairly well when I'm left alone, as soon as someone is watching me walk my legs go all wonky.
I would say that a walker is a very good idea! He may bock at the idea at first, but once he tries it, he'll wonder why he hesitated.

2. His balence is not that great either the past couple of days. What can we do to help this? What types of exercise can we do with him to help this. He is not walking on anything but his tip toes...
Fatigue is a major factor when it comes to balance, as well as loss of stabilizer muscles. Your Pop is going to have to start spreading breaks through his activities. Work a bit, rest for a bit...this may help.
You may want to get a Physio therapist in to suggest some good exercises.

3. Ok this is strange... Dad when he is really hungrey will eat or drink so fast that he will let out a couple of coughs.. The other day he had a coughing fit cause he was chewing his gum so fast that he almost swolled it. He was so hungrey that when we got in the car he grabed the Italian bread and ate half of it... He gobbled it... Never chocked but would have to let out a little cough drink some water and then would have to clear his throat... Then when he is not famished and eating reg. At a normal pace and not the pace of a person that has not eated in a month. This schocked me.. We were watching a funny movie, eating sausage, peppers, potatoes, and Italian bread, ginger ale and water. While this is going on we are all laughing unbelievble with full mouths. He was fine not a cough, gurgle all night.... So I guess it goes back to when we are tense an our muscles tighten up?
The appetite, I'm not sure about. You may want to be careful when watching something funny while Dad eats. For some reason, ALS affects people in that they can't control laughter or crying. I've been to movies where something funny happens and I star laughing like a rabid hyena! Quite embarassing!:oops: Anyway, my point is that your Dad may choke if he starts laughing with a mouthful of food.

4. Ok this dad loves to cook, clean, go shopping.... Is it bad for him to be up on his feet all day... Could this hurt him worse? Of coruse since I was little by the time 10pm came dad was snoring on the sofa... This is what he does now... However, after sitting for a long periods on the sofa if his feet are not elevated he will get up very stiff and have to have someone help him up... What can we do to avoid him from getting stiff when sitting on the sofa?
Not if he takes breaks every so often. For stiff muscles, maybe a hot water bottle or some kind of mucle massager may help. You can probably get one at a drug store.

Hope this helps you!

Cheers!
 

wewillbeatthis

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David that is fine no problem... I appreciate what you have done. I use that account for many things and the spam would upsey me.... thanks again...

Hope> My dad and I had one of those moments as well. I was tripping over myself all weekend. I was so tired from moving and stuff. Finally I said I am worried about you falling and I go down twice. We were laughing like you would not believe..... I think it is great that we are able to laugh about this sometimes. I do believe that at this day and age with all the medication, doctors, forums, and Durable Medical Equipment that is available this disease is more of an unfortunate disabiling disease then a life threatening disease.... So keep up the good work with your husband and stay positive...

Mike... Mike I have not heard from you in so long... How are things with you? Are you still taking all of your vitamins, medecation, and exerciseing? I hope so. How are things with you?

Thanks for breaking it all down for me...

The Rolater is what we are going to get for dad so on days that he is feeling tired and off balence he can use this. Today he called me so happy cause he had to go into work on one of the jobs. They would not allow him to bring the shopping cart that he uses to carry the paint and stuff into the cafe. Therefore he said I thought about it. Had the cane walked near the wall not holding onto it and went in very, very slow. I did it and I was so proud. It breaks my heart to hear that this person who would run around the base 6 years ago like jet can't walk into the cafe with out getting himself into a panic state... But, he did it... Mike it is amazing he walks very, very slow.. Drags his right foot a bit, and walks on his toes but he is determined to get things done and does it. You mentioned that he needs to take breaks in between. The problem is when he sits in the truck and drives or sits and watches TV getting up is hard. He has this problem that he can't put weight on the leg right away.. He gets shooting pain sometimes. However, if he takes 2 advil a day this does not happen. Advil helps ALS? Or Could this be a problem not associated at all with ALS?

The talkinga and eating. Like I said this only happens when he is starving that he is gullping and woofing in food. Anyone would cough... When he is eating slow and relaxed he is fine.... We have told him to try not to laugh and talk while eating... So this is what we are going to make sure of...

Laughing or Crying... Yes I had heard that this is a problem... Thank goodness this has not been an issue. Something funny is said, something funny on TV... He does not laugh anymore then anyone of us in the same room does... However, I will keep this in mind for I would not want him to be embarssed by this if it was to happen...

Exerices well dad has been doing different ones on his own, he is going to go back to PT, and we are going to start doing ROM three times a week instead of twice a week...

Mike it was so great to hear from you again. Please keep in touch and continue to stay strong cause wewillbeatthis.....

Jen
 

Bugsy

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Jan 20, 2006
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Hi Jen.I can't get up off my sofa anymore or even a normal chair.The ALS Society has loaned us an electric lazyboy style chair that lifts up and tilts,making it easier to get to standing position.It has been a Godsend as I sleep in it every night now.It gives me a sense of independance and safety.
 
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