ShellyRenee
Active member
- Joined
- Jun 23, 2005
- Messages
- 30
Hello,
Ok I need some advice and the only good advice I seem to get is from this group. The doctors don't seem to give any "heads up" on ANYTHING when it comes to ALS.
First big question: do I go behind my moms back and ask (beg) her doctor to pull her drivers license? I put the question out there once before and the doctor looked at mom and said "how do you feel about it?" To me that was a very STUPID question on his part. My dad will not and can not find it in his heart to tell her no more driving. He knows that she shouldn't but he is so torn and feels she is hurting enough. I am running daily back and forth for her just so she will not drive. She enjoys me taking her places but if I can't do it she will if she needs or wants to go some place. It is not that she is a bad driver but more so that she has these coughing attacks. What if she has one while driving? She DOES have them when I am driving her. I wish the doctor would just do it... :x
Mom is soooo out of breath. She is out of breath just tring to talk? I have been taking her grocery shopping and she needs to stop and sit for a few minutes a couple times through out the trip. I tell her she needs to ride in one of the motorized carts but that is a no go. I was teasing her (in a good way) the other day about the carts saying she was just afraid she would crash into someone. I keep saying "we could have fun with this". I would not let her hit anyone. Any how, is this common with ALS (out of breath that is) or is it more likely from the COPD and HER STILL SMOKING.? I asked her Pulmonologist about her intake of air and being out of breath, well finally lets do some test. No test until I ask for them, why aren't they the doctors? So to someone with ALS or a loved one, is there any certain test I should request?
Finally, a few weeks ago the Pulmonologist said he did not recommend mom to take anything by mouth any longer. Currently mom is taking in about 24 oz at a time, 4 x's a day. One 8oz. can of Pulmocare (good for lungs) with 355 cal., One 8 oz. can of Boost Plus with 360 cal., and 4oz. of Boost breeze with 50 cals. then about 4 to 5oz of water. She is gaining weight, :? but is this the problem with the breathing? Also, is there something better for ALS patients to be taking in? Protien?
I am finding that ALS is kinda like my sons' syndrome, he has Noonan Syndrome. Not many people have heard of Noonans and I am the one who is teaching these doctors and telling them what we should do. I just want for once a doctor to say OK this is what it is and this is what is coming and this is what we are going to do...... Will it ever happen. Please don't take this wrong but I am getting tired. I really have no right to complain, I am healthy. When I went to my docor for a check up and told him what all is going on in "my world", he asked about how much sleep do I get a night. I told him on average that it's about 5 hours, he told me I was going to kill myself this way. There just is not enough hours in a day/night. Like my new friend Pat said after Jack passed she slept and slept. Oh to sleep... My hubby sounds like a train when HE sleeps. My doctor says to that one that I should wear ear plugs to bed, YEA OK DOC.. :roll:
My tired eyes are burning so I must close for now. As always, THANK YOU to all for just being there.
Any word from Pat? Hello Pat :wink:
Goodnight all and sweet dreams,
Shelly
Ok I need some advice and the only good advice I seem to get is from this group. The doctors don't seem to give any "heads up" on ANYTHING when it comes to ALS.
First big question: do I go behind my moms back and ask (beg) her doctor to pull her drivers license? I put the question out there once before and the doctor looked at mom and said "how do you feel about it?" To me that was a very STUPID question on his part. My dad will not and can not find it in his heart to tell her no more driving. He knows that she shouldn't but he is so torn and feels she is hurting enough. I am running daily back and forth for her just so she will not drive. She enjoys me taking her places but if I can't do it she will if she needs or wants to go some place. It is not that she is a bad driver but more so that she has these coughing attacks. What if she has one while driving? She DOES have them when I am driving her. I wish the doctor would just do it... :x
Mom is soooo out of breath. She is out of breath just tring to talk? I have been taking her grocery shopping and she needs to stop and sit for a few minutes a couple times through out the trip. I tell her she needs to ride in one of the motorized carts but that is a no go. I was teasing her (in a good way) the other day about the carts saying she was just afraid she would crash into someone. I keep saying "we could have fun with this". I would not let her hit anyone. Any how, is this common with ALS (out of breath that is) or is it more likely from the COPD and HER STILL SMOKING.? I asked her Pulmonologist about her intake of air and being out of breath, well finally lets do some test. No test until I ask for them, why aren't they the doctors? So to someone with ALS or a loved one, is there any certain test I should request?
Finally, a few weeks ago the Pulmonologist said he did not recommend mom to take anything by mouth any longer. Currently mom is taking in about 24 oz at a time, 4 x's a day. One 8oz. can of Pulmocare (good for lungs) with 355 cal., One 8 oz. can of Boost Plus with 360 cal., and 4oz. of Boost breeze with 50 cals. then about 4 to 5oz of water. She is gaining weight, :? but is this the problem with the breathing? Also, is there something better for ALS patients to be taking in? Protien?
I am finding that ALS is kinda like my sons' syndrome, he has Noonan Syndrome. Not many people have heard of Noonans and I am the one who is teaching these doctors and telling them what we should do. I just want for once a doctor to say OK this is what it is and this is what is coming and this is what we are going to do...... Will it ever happen. Please don't take this wrong but I am getting tired. I really have no right to complain, I am healthy. When I went to my docor for a check up and told him what all is going on in "my world", he asked about how much sleep do I get a night. I told him on average that it's about 5 hours, he told me I was going to kill myself this way. There just is not enough hours in a day/night. Like my new friend Pat said after Jack passed she slept and slept. Oh to sleep... My hubby sounds like a train when HE sleeps. My doctor says to that one that I should wear ear plugs to bed, YEA OK DOC.. :roll:
My tired eyes are burning so I must close for now. As always, THANK YOU to all for just being there.
Any word from Pat? Hello Pat :wink:
Goodnight all and sweet dreams,
Shelly