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Jun 23, 2005

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,
Hi Shelly. You're in a difficult situation as you well know. Look after yourself first. If you break down physically or mentally you won't be any help for the family at all. As for the driving it is a matter of independence for your mom. She is probably just trying to hang on to one of the last big things she can do. I'm not ready to quit driving but have promised my family when I think I am not safe I'll quit. My reflexes are still good and I can still grip the wheel. Turning the keys in the ignition is still hard but I have a gadget that I can use when it gets too hard.
A talk with the doctor when your mom is not there might be a good idea. Tell him your concerns and put the ball back in his park.
Her breathlessness may be from the ALS but is probably compounded by the smoking and COPD. I always said I'd probably start smoking again when I hit 70. At $9 a pack now I don't think I'll be able to afford it 15 years from now. If I live that long. Is that your mom's only vice? My sister in law got lung cancer and her doctor told her to quit smoking. She tried and was a wreck. The doctor finally told her not to worry about it and enjoy the time she had left. The usual pulmonary function test should tell you how bad her breathing is. They test a bunch of things and compare it to the last one. Is the Pulmonologist recommending a feeding tube or does she have one already? And by the way tell her the scooters are fun. I used one at the USAF Museum and it was great. Sorry for being long winded but I guess I'm on a roll. Take care. AL.
Hello Al,

Thank you for replying to my rambling. I really enjoy reading what you have to say and/or offer to others.

I do not disagree about taking care of myself BUT.... I can't get the time to do so, it's crazy. This is when I get angry at the lack of help from my brothers. Correction, NO HELP from my brothers. When I start to dream of having a "day off" I feel quilty for thinking that way, mom doesn't get a day off from ALS.

Driving: Now according to my mother inlaw, she says no doctor will pull moms drivers license. She advised me to go to the police dept. That to me does not seem right. Mom is not a bad driver, nor is her reflexes slow, it is the coughing that she does that scares me. She will have a coughing attack that will last 10 mins. By coughing attack I mean a full fledge coughing and gagging.

The Neurologist was the one who said it was time for the feeding tube and that was placed on Oct 5th. By the end of Oct. the Pulmonologist was the one who was recommending no more food or liquids by mouth. I don't know if she is just in total denial but I asked her how she felt about it and her reply was "it could be worse". I don't know if she is getting the big picture here. With that being said she will only say one liners occassionally on how she feels.

Al, are you serious about a pack of smokes cost $9.00? Geepers. Mom just had me go into the store the other day to get her 4 packs of Marbarol (sp) Lights and it cost $13.02 TOTAL. I use to smoke and I enjoyed smoking. Believe me I still wish I did smoke some days, especially now. I knew it was time for me to quit (3 yrs. ago this coming Thursday, on my birthday) when I found myself trying to hide the fact that I did smoke from my teenage daughters' friends. That told me that I knew it was not right so why do it if I was only hiding it.

Now mom smoking is different: when she takes a puff she will start coughing but holding in the cough. Kinda like stopping a sneeze. When she does finish her cigg. she will cough and cough then be real weak. Bottom line by her stopping now will not change anything but why make things worse? This to me is like torture, to herself.

Now AL, who is MORE long winded you or I? I better run, once again my eyes are getting heavy. It will be another early day for me tomorrow, dad is taking a break and going deer hunting with TH GUYS so I will go in to do moms feeds tomorrow. Plus any other thing she can find for me to do. Sometimes I think she IS enjoying this, in a strange way that is.

Good night to all again and of course sweet dreams,
Hi Shelly. This one will be short. In Ontario a Doctor or eye doctor is required by law to report anyone who has an illness or poor eyesite that may be a hazard to driving. Smokes can be bought for less but this summer I was with someone who paid $9.00 for a large pack of smokes at a Marina. Some discount places are cheaper but not much. We have better health care up here but pay for it in taxes.
Shelly...I hope you have luck getting your mother not to drive, my husband was pulled over and because his speech is slurred and could not respond to the police fast enough, they arrested him for public intoxication. What a nightmare! Thankfully after showing paperwork, the charges were dropped. Be sure she carries some type of documentation. There is way here in the states to get a driver license removed for medical reasons but you have to go to court. Good luck!

The feeding tube seems to be very helpful for lots of people. Don't wait too long if she decides okay. It is too late for my husband his pulmonary(respiratory) level is at 30% to risky for surgery.

I will keep your family in my prayers!
praying for a cure,
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