All in a day

[jimO]

Where does the time?
For not doing anything the days sure seem filled.
Let's see day usually starts around 7 with a few lifts and turns I'm transferred into my day time spot ready to start my 12-14 hr job I have as a PALS ,you know the one I mean as home security guard making sure no one steals the television. Before I know it, its time for the daily briefing ( the morning news) then the morning meetings start you know the ones I mean 9am it's with Regis and Kelly,10am it's Ellen D.,11am it's the ageless Bob B.and some how with all these meetings I have to squeeze in some time for the home worker to spruce me up making me handsome for the day .
After a busy morning like that I usually need a bit of recovery time (a nap) so with the soothing sounds of the tube feeding machine and bi-pap machine buzzing I get some rest ready for the afternoon shift. Thanks to the satellite meetings with Oprah comes at 1 or 2 depending on is recovery time running over time, a little mind work with Alex T.and Vanna W. and before I know it school is out and it seems like half the school is running around my house and apparently children can't hear my speech device (the dynamyte) either that or kids just don't listen these days lol either way it's wasted energy so I try to stay low key during wild time.
After a bit of family time and online fun and since there is no NHL I must become a primetime crime fighter ,thanks to all the csi's ,law&orders, nypd blues I get to solve 2 or 3 murders every night. Of course we can't forget to come back to reality for a bit when I try to pick The Appreciate trying to be the soul Survivor during The Amazing Race back to the Big Brother house to do an Extreme Make-over all before my nightly joy ride on the ceiling lift into bed to finish my day with the nightly briefing(news)and falling asleep listening to buddies David L.or Jay L.
Pretty exciting days I don't know how I had time to do all the things I use to do.
Ok seriously its not exciting but it does keep the mind busy to a point and after dealing with ALS for 4 yrs now I've found one of the problems is not occupying the mind, because for me if I'm just sitting that's when depression,frustration and other not so helpful thoughts arise. No I'm trying to deny this I've accepted what is happening to me and what is to come but dwelling on it isn't the best thing either so since I can't look forward to the weekend golfing with the buddies it's looking forward to things like new movie release Tuesdays and spending time online talking to friends, e-mailing and reading all the stuff here which helps even thou I don't write much but I imagine it's the same for other PALS and CALS reading what others are posting is lots more helpful than reading articles so I'm glad people are posting here.
Yes I still get out once in a while like I made it to the ALS symposium a few weeks ago, it was a lot of work but well worth it meeting others dealing with this and if anyone I met there reads this (HI)
Anyway I better stop this novel just thought I'd share a bit of a life of 1 PALS and maybe a different look at the day .

 

[me]

Jim0 - how do you handle such a tight schedule? It's good you at least are able to snag a nap mid day! All that crime fighting surely will exhaust anyone! As for the kids, I don't believe they listen these days so it's probably good for them to at least know you're there with them.
Thanks for sharing your insight. Hope you can post more. The more the merrier. If not, we'll know you're out there reading in....

 

[Carol Deboer]

Hey Jimmie,

Good to see you on the forum. Glad you e-mailed me at home to bring us up to date with the family. You and Henry do the same things. You guys keep so busy with your celebrity status ! All these crimes, and talk shows, man, no wondered you are tired at the end of the day. ha... Seriously though, glad you posted and hope to see you here more often. Aren't you glad to see that finally the forum is being used? My heart sings. Have a good one. Gotta go watch the Grey Cup with the boys, I wonder how long I will sit there before they send me to bingo? ha....

Cheers, Carol

 

[Al]

Hi to JimO. I'm not sure if we het at the Symposiun but I am sure we at least breezed by each other and nodded. As the joke goes on here lately I am the Fat Bastard guy. Bald as well. Not too old 55 so you might remember seeing me. Glad to hear from you and keep your sense of humour. Hope to see you posting more if we can drag you away from the box.

 

[marlo]

Hello, jimO
It did my heart good to know that there is someone else out there filling their day with many of the same things as i do. Like you , i too have excepted the inevitable. I dont' have to like it but it's pointless to fight it. The hardest part for me is not my excepting it,, but getting those around me to stop sticking their heads in the sand,, an admit it. I guess their all in denial. The sad part is ,, their wasting precious time,, that you and i know we don't have. You seem to be farther along with this disease than i am. I pray you will see all your children graduate etc. I have already wittnessed that,, and just last Sept. was given my first grandchild. I have been widowed for almost 11 years now, i have 3 children,, 2 girls, one boy. I live alone so far,, but will have to move in with my oldest daughter and her husband as the disease progresses. They have training in the medical field so i should do alright there. At least they will know what my needs are. The one good thing to come out of this disease is that it has forced me to get my afares in order. I now have my will and patient advocate papers in place. Hopefully it will make life alittle easier on my kids when the end comes. I have asked this question a couple of times on here,, but no one has attempted to answer it. ,,, so if you don't mind, i'll see if you have any thoughts on it. The ALS has affected my speech and breathing more than anything so far. Do you know if it is possible for people to die with ALS due to not being able to breath ,, BEFORE,, they lose their motor skills? I just went to the doctor and he told me that an inhaler wont' help me,, cause it's the muscles breaking down. So do you have any thoughts on the subject? Well it's been nice talking with you jimO . Have a great day for all the ALS people out there,,, you have already brightened my day with your uplifted attitude. Marlo

 

[ladave]

Marlo-

I am far from being an expert. But since I got my prelim. diagnosed. I have been in touch with a woman whose husband had pulmonary onset ALS- meaning his breathing muscles went first. He was put on a ventilator and lived four more years- good years according to his widow. So I think- and again I'm no expert- that there are a small subset of PALS whose breathing goes first. I'd advise you to get to an ALS Center and discuss this with people who really know what they are doing.

Dave

 

[dana]

Hi Marlo,
Dad was completely mobile and it was his speech and then his breathing that weakened first. The reason my dad went into the ICU almost 3 weeks ago was because he was going into respitory failure. He was waking up every 30-45 minutes at night and was having a hard time getting air. A few weeks prior to the ICU visit, his doctor (not the neurologist) put him on oxygen because they thought this would help with his breathing. His breaths continued to be short and fast, and when they tested his CO2 levels in the ER, they were off the charts. From what I have read, many ALS patients die in their sleep quite peacefully, and many times it is because they have CO2 "poisening." Their CO2 levels sky rocket and they eventually stop breathing. I believe my dad would have died by the weeks end if we had not gotten him to the ER. He is now on a ventilator, and feels so much better. Now the problem becomes quality of life. I think my dad will have a lot of quality life left. He is still able to walk, but I know the disease will take that away from him at some point. I don't know if this answers your question or not, but it was worth a try.
Dana

 

[marlo]

Dana and Dave,,, thank you both so much,,for your info and opinions. I kinda thought we could just stop breathing ,, even if we could still walk,, but had never heard of anyone else having this problem. I guess theres alot worse ways to die then just going to sleep. It's the waking up ,,, into the realization that your struggling to breath that is the scary part. I pray for you all, a peaceful nights rest,, and a great new day. Your new ALS friend,, Marlo
P.S. Again thanks for the info

 

[Al]

Hi Marlo. You have asked a hard question to answer. Not so much that no one knows the answer but it is difficult for most of us to say "Yes you might die" The doctors don't like to say it other than saying "you do realize this is terminal and you had best get your affairs in order" A good friend of mine passed away in Dec. You may have seen some of her postings as Elaine. She had bulbar symptoms affecting her speech and swallowing. She didn't have near the wasting in her hands that I do. She passed away in her sleep and her husband told me she just choked and couldn't clear her throat.
An inhaler doesn't work because the muscles aren't working. Giving oxygen to a short of breath ALS patient is useless because our problem is not with oxygen absorbtion but just getting air in. Make sure your family knows this if they have to call 911. I use a Bipap machine to help me breathe at night or whenever I lie down. I must sit up straight or stand to get ari in. I have thought about getting a tatoo on my forehead saying This end up or do not lay flat. It is that important to a breathing compromised patient.
Talk to your Pulmonologist. Do a pulmonary function test. Maybe you need a Bipap to give your muscles a rest at night. Don't let them write you off yet. There is a lot of good life left in you. You have to keep asking questions of the doctors and be informed about your options. Your GP or family doctor probably knows less about ALS than you do. Look out for you. Be informed and ask questions and if you don't get the answers you think you should get another opinion.

 

[marlo]

Hi Al, Thanks for the info, i know theres no absolutes in this disease as it does seem to be different for everyone. I am sorry to hear about your friend. I am new to this site so i did not get a chance to know her. How long have you had ALS? I got sick around Christmas time 2004. I had many symtoms and none of them seemed to be linked to the same illness. Finally was diagnost with Hashimoto Thyroiditis ( low thyroid). The doctor called me at home,, and told me. I said great " how do we treat it"? She said " oh theres no cure, and you will not beable to work for months or longer cause you wont' beable to get of the sofa". Then hung up. Well i already knew that i couldn't work cause i could barely move as it was. Thank God my oldest daughter was a pre-med student and knew enough to know that there was no cure ,, but there is treatment. She called the doctor and said if you don't treat her , she will grow a goiter. The doctor said ,, if i do treat her for it ,, she may develop heart trouble. My daughter ,, told her we would risk it,, so she put me on the lowest dose there is. I continued to get worse. My family thought i was going to die, as i started having some sort of weird seizures, and having more trouble breathing and my voice was anything but normal. The doctor continued to say there was nothing else she could do. So we found another doctor. I am very happy with him, he did not have all the answers but he increased my thyroid medicine which has made me feel much better. I know this sounds weird and bad ,, but i was bleeding into my mouth all the time. It's not from my teeth as that was checked first. But no one had an answer. So my new doctor sent me to have a scope up my nose and down my throat. The nose doctor said " i can see the blood but i can't tell where it is coming from". He thought the scope down my throat would show where it was coming from ,, but it didn't. So they did scans, and mri, etc etc. and still we don't know where it came from. It has let up for the most part,, now i mostly just taste it,, not see it too much. Anyway for the rest of my symtoms, my doc sent me to 2 neurologists. After 6 months of tests , i have been diagnost with ALS by the 1st one and either ALS or Primary by the 2nd one. He was mad about being my 2nd opinion so i think he just didn't want to say that the first one was absolutely right. Cause after reading about everyones symtoms on this site. I seem to be fitting in more with the ALS. I guess time will tell. Sorry this is so long,, but that been my life for the last 15 months or so. I pray for you all daily. May God have mercy on us all. Marlo

 

[Al]

I was diagnosed in Oct. 03. I had been feeling weaker and weaker in 2002 and didn't notice the fasciculations until Dec. 02 or Jan. 03. I went to my GP and he did a bunch of tests and it took until Oct. to get an appointment with the Neuro. We have free healthcare up here but it sometimes takes 3 to 9 months to get in to a specialist. So we take the good with the bad. One good thing is that I have seen 5 different Neurologists. Right now it's 3 for ALS 1 probably and one maybe not. From my own research, I've got it. God I hate being right. Anyway that's my short story for tonight. Take care everyone.

 

[marlo]

Hey Al,
Seems we both had a late night on here. Some nights i hate to go to bed, i'm not afraid of being dead,, it's the getting from here to there ,, that i'm not so crazy about. Anyway,, i think we are as good about diagnosing ourselves with this disease as the doctors are in most cases. For the most part it is guess work for them to.. That and wait and see if we get anymore symtoms. Well it is time for me to call it a night,, so till next time,, take care.
Marlo

 

[Al]

Yes I know. Sort of like the guy that fell 10 story's. The fall didn't kill him . It was the sudden stop.

 

[marlo]

You do have a neat sense of humor about life and this disease Al,, i hope you never lose it. Humor is what keps us going. marlo