azevedoc
03-08-2007, 12:59 PM
New als diagnosis, not very good at negotiating this website, and have some tough questions. Where could I go to ask them?
View Full Version : New? Introduce Yourself - Say Hello
liz
03-08-2007, 02:05 PM
Hi azevedoc -
Sorry to hear about your diagnosis. You've definitely come to a good place to ask questions. Sometimes you get better answers if you share just a little info about yourself, for example, where you live (generally speaking).
Wish we didn't need to be here, but it is nice to meet you.
Liz
Sorry to hear about your diagnosis. You've definitely come to a good place to ask questions. Sometimes you get better answers if you share just a little info about yourself, for example, where you live (generally speaking).
Wish we didn't need to be here, but it is nice to meet you.
Liz
MtPockets
03-09-2007, 10:03 AM
Welcome to the forum. :smile:
Sorry you have to be here but we all are in the same situation, so feel free to jump in and ask any questions you may have for us. This is a great group of friendly caring people. Some have ALS, as I do, some are care givers, etc. There is a good mixture of people to answer any questions you may have.
It may also help you to search using the icon above if you have a question about a particular topic, but we look forward to hearing from you.
God Bless
Capt AL
Sorry you have to be here but we all are in the same situation, so feel free to jump in and ask any questions you may have for us. This is a great group of friendly caring people. Some have ALS, as I do, some are care givers, etc. There is a good mixture of people to answer any questions you may have.
It may also help you to search using the icon above if you have a question about a particular topic, but we look forward to hearing from you.
God Bless
Capt AL
azevedoc
03-10-2007, 12:08 PM
I just love this picture, thanks for posting it. Very uplifting!
katherinem
03-15-2007, 12:34 AM
Hi everyone. I've been lurking a bit lately and your information has been helpful; thank you.
My father was diagnosed with ALS in 1998. At the time we certainly didn't expect he'd still be here today, but he has had a good long run, playing golf (his favorite) until four years ago and living on his own until two years ago (he's divorced). But now he's in assisted living and soon will be unable to stay there anymore. He's on oxygen at night and yesterday was put on a feeding tube.
The problem is that my father, in some misguided attempt to protect us (my brother and I), will not talk to us about future progression of the disease or certainly not a prediction of time that he might have left. I well know that doctors only know so much, but it's very stressful to not have any information specific to him. Obviously I've read all the technical info I could about it over the years, but now I'm finding it very helpful to read your stories.
So thank you again and I'll see you around here.
Katherine
My father was diagnosed with ALS in 1998. At the time we certainly didn't expect he'd still be here today, but he has had a good long run, playing golf (his favorite) until four years ago and living on his own until two years ago (he's divorced). But now he's in assisted living and soon will be unable to stay there anymore. He's on oxygen at night and yesterday was put on a feeding tube.
The problem is that my father, in some misguided attempt to protect us (my brother and I), will not talk to us about future progression of the disease or certainly not a prediction of time that he might have left. I well know that doctors only know so much, but it's very stressful to not have any information specific to him. Obviously I've read all the technical info I could about it over the years, but now I'm finding it very helpful to read your stories.
So thank you again and I'll see you around here.
Katherine
Countrycouple
03-15-2007, 06:38 AM
The problem is that my father, in some misguided attempt to protect us (my brother and I), will not talk to us about future progression of the disease or certainly not a prediction of time that he might have left. I well know that doctors only know so much, but it's very stressful to not have any information specific to him. Obviously I've read all the technical info I could about it over the years, but now I'm finding it very helpful to read your stories
Welcome katherinem to the ALS Forums.. Great people..and GREAT info here..
Mom was like your father when she was diagnosed.. I went and got the ALS Handbook, and started to read it..and then started tellingher some things, eventually we began to read the book together.. It might be away to get your father to open up to you and your brother..
Welcome katherinem to the ALS Forums.. Great people..and GREAT info here..
Mom was like your father when she was diagnosed.. I went and got the ALS Handbook, and started to read it..and then started tellingher some things, eventually we began to read the book together.. It might be away to get your father to open up to you and your brother..
beckycooper31
03-15-2007, 03:49 PM
Hey There, I am new to the site and to the diagnosis. I have so many questions that I sure hope you can help me answer or at least let me know I am not alone and crazy. I was diagnosed in Dec, 2006 and rediagnosed at a clinic in Jan.,2007 Placed on Rilutek in Feb, 2007. I am 53 and a new grandmother. Thanks in advance for all your patience and help. Becky
Al
03-15-2007, 04:59 PM
Welcome Becky. Sorry about the diagnosis but we'll do our best to help with information and support.
AL.
AL.
katherinem
03-15-2007, 05:05 PM
He's on oxygen at night and yesterday was put on a feeding tube.
Sorry, I miss-spoke (miss-wrote?) yesterday. My father's decision to go on a feeding tube was made on Tuesday and the procedure is now being scheduled. He lives in Canada, so who knows if it will be soon or six months from now. :roll: But he assures me that he is doing this proactively to minimize the risks.
So thank you Mike (countrycouple) for your suggestion. I talked to my father this morning and tentatively asked a few questions of the sort, "I read about whatever, has your doctor talked to you about that?" and he was very good about answering direct questions. Of course he soon cut me off with, "You've got to understand that the doctors just don't know a lot of this stuff," but that was the most productive conversation about ALS we've had in a long time. So thank you for that idea.
Sorry, I miss-spoke (miss-wrote?) yesterday. My father's decision to go on a feeding tube was made on Tuesday and the procedure is now being scheduled. He lives in Canada, so who knows if it will be soon or six months from now. :roll: But he assures me that he is doing this proactively to minimize the risks.
So thank you Mike (countrycouple) for your suggestion. I talked to my father this morning and tentatively asked a few questions of the sort, "I read about whatever, has your doctor talked to you about that?" and he was very good about answering direct questions. Of course he soon cut me off with, "You've got to understand that the doctors just don't know a lot of this stuff," but that was the most productive conversation about ALS we've had in a long time. So thank you for that idea.
liz
03-16-2007, 08:05 AM
Hey Becky -
You may be crazy but are definitely not alone. And the longer people spend time here the less crazy they feel, so I hope you'll stick around. There's lots of information and great support to be had on this forum.
Liz
PS - Congrats on the birth of your grandchild. That's really exciting. :-D
You may be crazy but are definitely not alone. And the longer people spend time here the less crazy they feel, so I hope you'll stick around. There's lots of information and great support to be had on this forum.
Liz
PS - Congrats on the birth of your grandchild. That's really exciting. :-D
Frizzel
03-16-2007, 10:49 AM
My name is Frizzel. How do I get on board with this support group? I'm on line...just need to understand how this works. Thanks for any input.
I'm in my 11th year with PLS. Long story.. for now I've got to get to work. Question...
Wondering about electric scooter or manual wheelchair. ( my arms still have strength... )
PLS is moving into my left hand and fingers now. Any thoughts on the pros or cons of electric vs manual wheel chair? Thanks!
I'm in my 11th year with PLS. Long story.. for now I've got to get to work. Question...
Wondering about electric scooter or manual wheelchair. ( my arms still have strength... )
PLS is moving into my left hand and fingers now. Any thoughts on the pros or cons of electric vs manual wheel chair? Thanks!
Cape Cod
03-16-2007, 09:26 PM
Hi All,
I am so thankful we were able to come here so quickly. Thanks to David, Al and others who have helped. It is wonderful.
Dana, when I saw I was a "senior member", I thought I would be the only one, as I had given my birth date at registration. I am happy to learn that "senior member" has nothing to do with age.
Happy to be here.
I am a new member trying to find my way around ! Glad to see there is another Granny altho I am known to grandchildren as Grammy. My husband was diagnosed with ALS Jan 2006. His arms and legs are affected at present and doctors say it is slow progressing. I have enjoyed reading the comments on this page and hope to join in. CApe Cod
I am so thankful we were able to come here so quickly. Thanks to David, Al and others who have helped. It is wonderful.
Dana, when I saw I was a "senior member", I thought I would be the only one, as I had given my birth date at registration. I am happy to learn that "senior member" has nothing to do with age.
Happy to be here.
I am a new member trying to find my way around ! Glad to see there is another Granny altho I am known to grandchildren as Grammy. My husband was diagnosed with ALS Jan 2006. His arms and legs are affected at present and doctors say it is slow progressing. I have enjoyed reading the comments on this page and hope to join in. CApe Cod
Cape Cod
03-16-2007, 09:49 PM
I am still working on using this site! My husband was diagnosed in Jan 2006 with ALS and is progresing slowly according to doctors. His arms and legs are affected and he is mainly in a motorized chair since a fall three weeks ago when his legs just gave out. His breathing is good and he has no problem eating. I have enjoyed reading about so many experiences in this forum. Thank you, Cape Cod
njgal
03-24-2007, 08:55 PM
I am new to this website. My goal is to learn what I can about this disease, and learn how best to help my dear friend who was diagnosed 2 years ago. I am normally not at a loss for words, but seem to be hitting that road block as his anger mounts. Suggestions?
njgal
03-24-2007, 08:58 PM
My best friend was diagnosed with ALS, and it sounds as if he is at the same stage as your husband. What advice can you give me about how best to talk to my friend, and to cheer him up? He is beginning to really worry me: fewer phone calls (he lives about 4 hours away), little to say, sounds really down and out. I just don't know what to do next. Any suggestions?
edna may
03-24-2007, 09:53 PM
I am a new member. Glad to find forum site. Going to take some time and get aquainted . LEROY:)
Hi LeroyWelcome. good to know you. EM:twisted:
Hi LeroyWelcome. good to know you. EM:twisted:
Frizzel
03-24-2007, 10:24 PM
Welcome...
Frizzel
Frizzel
Al
03-25-2007, 01:41 AM
Welcome njgal and Cape Cod. The best thing to do here is first try the search feature to try to find what you are looking for. If that doesn't work just ask away.
AL.
AL.
MtPockets
03-25-2007, 10:36 AM
Welcome to all who have just discovered the forum. I'm sorry you have to come here, but we are all facing the same problems. Feel free to jump in with any questions.
Frizzle, about the wheelchair question;
I have used manual wheelchairs for the past 12 years at least and I like their mobility. They are easy to store in the trunk of a car or in a back seat. Almost all fold up for this storage and are relatively light compared to a motorized wheelchair.
I have been in a motorized chair for about 8 months now I guess, and had to buy a new vehicle just to carry the thing around. I had to buy a vehicle that had a class III trailer hitch to mount the lift mechanism on. My chair weights close to 300 LBS, and I use a rear lift rack on my car to carry it. The cost for a van that you can drive a wheelchair into was too much for me, $50,000 as I am over 6 feet tall and needed the raised roof type. Of course you can find them cheaper used, but there were none around my location when I needed one, thanks to hurricane Katrina. I am in Gulfport, Mississippi.
With the arm weakness you can use the cheaper and lighter manual wheelchair until your arm strength is gone, or have someone else do the pushing I guess.
I hope this helps.
God Bless
Capt AL
Frizzle, about the wheelchair question;
I have used manual wheelchairs for the past 12 years at least and I like their mobility. They are easy to store in the trunk of a car or in a back seat. Almost all fold up for this storage and are relatively light compared to a motorized wheelchair.
I have been in a motorized chair for about 8 months now I guess, and had to buy a new vehicle just to carry the thing around. I had to buy a vehicle that had a class III trailer hitch to mount the lift mechanism on. My chair weights close to 300 LBS, and I use a rear lift rack on my car to carry it. The cost for a van that you can drive a wheelchair into was too much for me, $50,000 as I am over 6 feet tall and needed the raised roof type. Of course you can find them cheaper used, but there were none around my location when I needed one, thanks to hurricane Katrina. I am in Gulfport, Mississippi.
With the arm weakness you can use the cheaper and lighter manual wheelchair until your arm strength is gone, or have someone else do the pushing I guess.
I hope this helps.
God Bless
Capt AL
Frizzel
03-25-2007, 08:18 PM
Hi Captain!
Thanks for the info on the wheel chair. We rented one for a month. Lighter, fold up with a gel cushion just to see how it will work for me. A little sportier looking than the hospital looking ones. My husband says I go so fast compared to the trying to walk with my walker that he's going to have to start working out just to keep up with me. ha! I'm going to the Certified ALS clinic in at Providence Hospital in Portland the first week of April. They are going to evaluate me too. They got me in in a week. Wow! COuldn't believe it. I am soooooo grateful. Feel like I'm on the right track with how to take care of myself and the progression of the PLS. Spent most of the day running around in my chair. Felt like a free bird let out of her cage. For now, I am so grateful to the Lord for the opportunity to feel this way, even if just for a season. I want to keep my arm strength up as long as possible.
Take care of yourself Captain Al. Spring time is almost here. I learned how to cook southern years ago. Many wonderful memories. some of the best people around are from the southern states.
You are so right about the cost of the vans. Doggone, we could almost pay off our house for what they cost. One day at a time. Blessings and Joy! Have a great week and God be with you as you forge ahead on this 'Road Less Traveled'.
Frizzel
Thanks for the info on the wheel chair. We rented one for a month. Lighter, fold up with a gel cushion just to see how it will work for me. A little sportier looking than the hospital looking ones. My husband says I go so fast compared to the trying to walk with my walker that he's going to have to start working out just to keep up with me. ha! I'm going to the Certified ALS clinic in at Providence Hospital in Portland the first week of April. They are going to evaluate me too. They got me in in a week. Wow! COuldn't believe it. I am soooooo grateful. Feel like I'm on the right track with how to take care of myself and the progression of the PLS. Spent most of the day running around in my chair. Felt like a free bird let out of her cage. For now, I am so grateful to the Lord for the opportunity to feel this way, even if just for a season. I want to keep my arm strength up as long as possible.
Take care of yourself Captain Al. Spring time is almost here. I learned how to cook southern years ago. Many wonderful memories. some of the best people around are from the southern states.
You are so right about the cost of the vans. Doggone, we could almost pay off our house for what they cost. One day at a time. Blessings and Joy! Have a great week and God be with you as you forge ahead on this 'Road Less Traveled'.
Frizzel
REMSENBURG
03-25-2007, 10:31 PM
Hi, new here ALS about 6 months now.left foot started to swell today any advse TIA
Al
03-26-2007, 12:18 AM
Welcome to the site REMSENBURG. Usually the best thing for feet swelling is to elevate them if it just inactivity that is causing it. As the muscles atrophy they don't pump blood back to the heart as well. Have you ever had clotting problems.? That could be another scenario.
AL.
AL.
Adele
03-26-2007, 10:17 AM
Hi, I'm Adele...new here...glad this site is here....my mum has ALS...I'm not coping well with it & neither is she. Moved across the country so I can be close to her. My stepfather quit his job to take care of her but their son, my half-brother is Autistic. Now my mum wants to go into a chronic care home so that she's not a burden to them. My stepfather & I don't get along, he has kept me from visiting her. Last time I saw her was late Jan. &she was on a feeding tube & needed help to walk. She can't communicate any more, so no more emails or phone calls. I'm constantly worried about her. Once she goes into the care hospital, I'll be able to see her but it hurts to see her in so much pain. I feel so helpless. I appreciate any support or advice. I'm seeing a shrink for coping skills but it's not helping me. Thanks for letting me vent. Adele
Frizzel
03-26-2007, 10:49 AM
Hi Adele,
I hear your frustration with trying to be with your mum. It sounds like you really want to be with her. Maybe in some way, moving to a care hospital, if that's what she's asking for is her way of being with you. Just my opinion...I don't know the circumstances. She's still the same mum inside her body... What a gift you have given her to move close to be with her. That speaks volumes.
My suggestion is to get support for you. If one counselor doesn't work, try another or go find an ALS support group in your area. While, your mum still can, maybe she can go with you. You can make it a little fun by doing something special like going for a drive in a pretty area of town. If it's a nice day, bring in some outside air. FOr me in the car I have to keep my legs warm so I bring a blanket to cover them. Sometimes I place a hot water bottle at my lower back. Just make sure to screw the top on tight. Believe me, I know....ha
Thank you for sharing Adele.
Blessings and Joy~ Frizzel
I hear your frustration with trying to be with your mum. It sounds like you really want to be with her. Maybe in some way, moving to a care hospital, if that's what she's asking for is her way of being with you. Just my opinion...I don't know the circumstances. She's still the same mum inside her body... What a gift you have given her to move close to be with her. That speaks volumes.
My suggestion is to get support for you. If one counselor doesn't work, try another or go find an ALS support group in your area. While, your mum still can, maybe she can go with you. You can make it a little fun by doing something special like going for a drive in a pretty area of town. If it's a nice day, bring in some outside air. FOr me in the car I have to keep my legs warm so I bring a blanket to cover them. Sometimes I place a hot water bottle at my lower back. Just make sure to screw the top on tight. Believe me, I know....ha
Thank you for sharing Adele.
Blessings and Joy~ Frizzel
MtPockets
03-26-2007, 12:03 PM
Good Morning all,
Just rolled out on the back porch and enjoyed all the beautiful wonders of spring. The flowers are blooming, the trees are getting new green leaves, and my grass is no longer dead looking. It's amazing how beautiful God makes things look after such a drab winter. It makes me appreciate having another day to enjoy what I have before me.
Yes, I hurt so bad I could not get out of bed without my wife pulling me, yes the swelling in my legs hurts, and I could focus on so many other negative things that are trying to distract me from the beauty that surrounds me every moment. Life is a wonderful gift and I will enjoy every moment of it, one day, one hour, even one minute at a time.
As our fearless leader AL says, "Live today like tomorrow may never come". By the way thanks for that AL.
To those new to the forum, I know your scared, we all were when we first got our Dx. There are several steps we all go through in the process of having this disease, if you have been to counseling you have already heard them many times. But for the benefit of these who have not they are:
Denial
Bargaining
Anger
Depression / Anxiety / Grief
Acceptance
We each work our way through these at different speeds. We even sometimes back pedal and go through them again at some point. If you get to the end of it, then you have to decide on your attitude about what life you have left.
Your choice can be:
1. Be negative and be miserable until the end, and in the process make all those around you miserable or
2. Have a positive attitude and live one day at a time. Enjoying life each day like it may be your last.
How do you want to be remembered by those around you?
I know it's hard. I know it's painful. I also know God will give you the grace to make it to the end if you will ask Him. May God bless you with special peace this day and each day to come.
If you need any personal help in getting through this, send me a private message and I will be glad to talk with you. Just left click on my name MtPockets and chose personal message.
Here is a hug for the hurting.
God Bless
Capt AL
Just rolled out on the back porch and enjoyed all the beautiful wonders of spring. The flowers are blooming, the trees are getting new green leaves, and my grass is no longer dead looking. It's amazing how beautiful God makes things look after such a drab winter. It makes me appreciate having another day to enjoy what I have before me.
Yes, I hurt so bad I could not get out of bed without my wife pulling me, yes the swelling in my legs hurts, and I could focus on so many other negative things that are trying to distract me from the beauty that surrounds me every moment. Life is a wonderful gift and I will enjoy every moment of it, one day, one hour, even one minute at a time.
As our fearless leader AL says, "Live today like tomorrow may never come". By the way thanks for that AL.
To those new to the forum, I know your scared, we all were when we first got our Dx. There are several steps we all go through in the process of having this disease, if you have been to counseling you have already heard them many times. But for the benefit of these who have not they are:
Denial
Bargaining
Anger
Depression / Anxiety / Grief
Acceptance
We each work our way through these at different speeds. We even sometimes back pedal and go through them again at some point. If you get to the end of it, then you have to decide on your attitude about what life you have left.
Your choice can be:
1. Be negative and be miserable until the end, and in the process make all those around you miserable or
2. Have a positive attitude and live one day at a time. Enjoying life each day like it may be your last.
How do you want to be remembered by those around you?
I know it's hard. I know it's painful. I also know God will give you the grace to make it to the end if you will ask Him. May God bless you with special peace this day and each day to come.
If you need any personal help in getting through this, send me a private message and I will be glad to talk with you. Just left click on my name MtPockets and chose personal message.
Here is a hug for the hurting.
God Bless
Capt AL
freespirit2328
04-17-2007, 05:37 PM
Hi. I just found out a very good friend has this, and I'm so worried and don't know what to expect or how I can help. Any advice would be appreciated. I love this person very much.:cry:
liz
04-18-2007, 10:58 AM
Welcomed freespirit -
I think it's fantastic that you're taking this much initiative to find out how to help your friend. One thing that may help, although it is time-consuming, is to start browsing through all the old threads here. You may want to pay particular attention to the caregivers' contributions. And feel free to post any questions that you have. No matter what the issue, somebody here has "been there done that" and can share their experience. Nice to meet you.
Liz
I think it's fantastic that you're taking this much initiative to find out how to help your friend. One thing that may help, although it is time-consuming, is to start browsing through all the old threads here. You may want to pay particular attention to the caregivers' contributions. And feel free to post any questions that you have. No matter what the issue, somebody here has "been there done that" and can share their experience. Nice to meet you.
Liz
patricia1
04-18-2007, 02:49 PM
The most important thing is dont give her pity We dont need that we need encouagement Wait till she is really to talk Dont bring it up until she is ready. Thats how I felt and my friends always waited for me to talk about things Follow her lead she will tell you if she needs help Take her out shopping lunch shows theater thats what makes me feel normal . and laugh laugh laugh alot. And be there for her good luck pat
MtPockets
04-19-2007, 01:13 PM
Glad you found us FreeSpirit. You came to the right place for help. The advice the others have given is right on. The search button above the message section will help direct you to any subjects or question you may have and you can see how others have faced the situation you are in with your friend.
Laughter and a positive outlook on each and every day we have left here does wonders to help us get through this horrible disease. We have a thread here called cheer people up which is nothing but jokes and funny things to keep our minds off this disease. Something like that maybe in emails to her when you can't be there in person would help.
God bless you as you help your friend through this time in their lives. They are blessed to have someone like you in their lives that cares.
God Bless
Capt AL
Laughter and a positive outlook on each and every day we have left here does wonders to help us get through this horrible disease. We have a thread here called cheer people up which is nothing but jokes and funny things to keep our minds off this disease. Something like that maybe in emails to her when you can't be there in person would help.
God bless you as you help your friend through this time in their lives. They are blessed to have someone like you in their lives that cares.
God Bless
Capt AL
shreejc
04-23-2007, 06:22 AM
Hi,
I'm a new member, and this is the first forum of its kind that I've joined...so please bear with me...
My mother is suffering from ALS, diagnosed in 2003...her condition has deteriorated...now I feel the need of belonging to some kind of group which will help me in finding and giving help & support...
I'm a new member, and this is the first forum of its kind that I've joined...so please bear with me...
My mother is suffering from ALS, diagnosed in 2003...her condition has deteriorated...now I feel the need of belonging to some kind of group which will help me in finding and giving help & support...
shreejc
04-23-2007, 06:22 AM
Hi,
I'm a new member, and this is the first forum of its kind that I've joined...so please bear with me...
My mother is suffering from ALS, diagnosed in 2003...her condition has deteriorated...now I feel the need of belonging to some kind of group which will help me in finding and giving help & support...
-JC
I'm a new member, and this is the first forum of its kind that I've joined...so please bear with me...
My mother is suffering from ALS, diagnosed in 2003...her condition has deteriorated...now I feel the need of belonging to some kind of group which will help me in finding and giving help & support...
-JC
CindyM
04-23-2007, 07:47 AM
Welcome J. C. Sorry to hear about your Mom but glad you found us. the folks here are incredibly helpful. Feel free to post any questions or thoughts you may have and for additional support there is always the search function at the top of this screen. Cindy
MtPockets
04-23-2007, 10:44 AM
Welcome to the forum JC. :) I'm so glad you found us. As Cindy said please feel free to jump right in with any questions or comments. We are all going through the same things and can identify with your pain.
God Bless
Capt AL
God Bless
Capt AL
Frizzel
04-23-2007, 11:40 AM
Glad you found our corner of the web.
Frizzel
Frizzel
Al
04-23-2007, 03:50 PM
Welcome jc. Glad you found us.
AL.
AL.
alperstein
04-30-2007, 03:59 PM
Hello from Izmir - Turkey
About me:
Alper Kaya MD Ophthalmologist 46 M Limb onset sporadic ALS (Amyotrophic Lateral Sclerosis) Dx at the age of 28 in Hou/Tx - August 1990, no family history, I am an ophthalmologist also (retired), married to Elcin, we have a daughter Ece, my wife is dentist, I used to play classical guitar. I have caregiver (Abla), during daytime 08:00 - 18:00 I can use my powerchair, still speaking and eating. I'm on trach+vent since March 2004 I can type by onscreen keyboard.
Best wishes to all;-)
Alper
About me:
Alper Kaya MD Ophthalmologist 46 M Limb onset sporadic ALS (Amyotrophic Lateral Sclerosis) Dx at the age of 28 in Hou/Tx - August 1990, no family history, I am an ophthalmologist also (retired), married to Elcin, we have a daughter Ece, my wife is dentist, I used to play classical guitar. I have caregiver (Abla), during daytime 08:00 - 18:00 I can use my powerchair, still speaking and eating. I'm on trach+vent since March 2004 I can type by onscreen keyboard.
Best wishes to all;-)
Alper
Frizzel
04-30-2007, 04:05 PM
Hi Alber, Thank you for sharing about yourself and your family.
Al
04-30-2007, 04:08 PM
Welcome Alper. It is good to see such a long survivor here. It helps to give hope to us all. I am sure we will have many questions that you can help us with. Welcome.
AL.
AL.
alperstein
04-30-2007, 04:26 PM
Welcome Alper. It is good to see such a long survivor here. It helps to give hope to us all. I am sure we will have many questions that you can help us with. Welcome.
AL.
Thanks for welcome note.
I will be around my friend;-) If not please mail at my reg. Email address
Nice to be here;-)
Alper
AL.
Thanks for welcome note.
I will be around my friend;-) If not please mail at my reg. Email address
Nice to be here;-)
Alper
Al
05-01-2007, 01:19 AM
Man that's quite the website/ blog you have there.
AL.
AL.
shh
05-02-2007, 07:51 PM
Hello to everyone. My mother was diagnosed with als in December. She is currently trying alternative medicine. Most recently, she has been talked into phospholipid therapy. Has anyone heard of this? I found a couple of sites on the internet, but I am just not a believer.
I am so happy to have other people to talk to about als. All this is new to me. Thank you for any information you can provide.
shh
I am so happy to have other people to talk to about als. All this is new to me. Thank you for any information you can provide.
shh
bufbon2
05-02-2007, 08:23 PM
Hello, my name is Geralyn and I'm the youngest sister to my brother Rick who has ALS. My bro was dx when he was 28 after serving 6 yrs in the Air Force. My brother has just celebrated his 47th birthday! Yes, his 47th. He has been on a vent for at least the last 10 years. To those wondering if you should go on a vent or caregivers trying to make the decision, we have never regretted it. My brother enjoys a quality of life from his bed that some cant accomplish on their two feet. He has watched his sisters get married, his nieces, nephews and great niece come into this world. Thanks to the world of technology, he watches tv, monks around on his computer, plays games and the best part...EBAY, on-line shopping, web-banking! Is it hard? absolutely! but this is the kind of hard stuff that brings out the best in the human spirit. My brothers illness has not been met with vain. He has kept a family together and enriched our circle of friends with his spirit and bravery.
It is my pleasure to now join this forum as I help my brother through his next journey in life.
God speed,
Geralyn
It is my pleasure to now join this forum as I help my brother through his next journey in life.
God speed,
Geralyn
Al
05-03-2007, 02:16 AM
Hi shh. Welcome to the site. I looked around and could find absolutely no reason why anybody would want to be treated with this drug for ALS. There are no indications anywhere that I am aware of that ALS is caused by a virus. She is wasting her money unless she is part of a certified drug trial but as far as I read they are using it to treat Hep C. You should check out our scamwatch section.
AL.
AL.
Al
05-03-2007, 02:23 AM
Welcome bufbon2. Thank you so much for joining our forum and telling us of a success story of someone on a vent. Some of the members here have been looking for information about whether it is too difficult to do it and are not getting information or support from their doctors. I'm sure you will be able to help.
L. A
L. A
MtPockets
05-05-2007, 12:57 PM
If some of you are wondering just who is Capt AL check out my webpage at:
http://www.myspace.com/als_bigal
God Bless and have a great weekend
Capt AL
http://www.myspace.com/als_bigal
God Bless and have a great weekend
Capt AL
Al
05-05-2007, 07:45 PM
Just took a quick peek Al but it looks real nice. I'll bookmark it and get back later.
AL.
AL.
FORMYMOTHERRIP
05-09-2007, 10:05 PM
HI everyone,
Im on this site to contribute and help others with ALS related questions, My mother passed away on April 12, 2007 after a 12 year battle with ALS. IF you have any questions please let me know as I may have a few experiences to share.
God Bless you all, I will keep you in my prayers every night.!!!!!!!
Bill DiNapoli
Im on this site to contribute and help others with ALS related questions, My mother passed away on April 12, 2007 after a 12 year battle with ALS. IF you have any questions please let me know as I may have a few experiences to share.
God Bless you all, I will keep you in my prayers every night.!!!!!!!
Bill DiNapoli
Frizzel
05-09-2007, 10:10 PM
Can you share a couple of things you want to remember about your mom? What inspired you being with her both growing up and while she was going through the disease with ALS. I have two children..one 30 and one 28. Frizzel
Sunshine
05-10-2007, 08:39 AM
Hi Bill. I am so sorry about your Mother. We will keep you in our prayers also. Thank you. Sunshine
Sunshine
05-10-2007, 08:41 AM
Hi Capt. Al. Great webpage. Now I actually have a reason to go on myspace! My kids will wonder what I am up to!! Take care, Sunshine
MtPockets
05-10-2007, 10:32 AM
Thanks for visiting my page and thanks for the comments.
God Bless
Capt AL :)
God Bless
Capt AL :)
indianchic
05-10-2007, 07:05 PM
Hello everyone. My name is Sharon and my husband was diagnosed with ALS in Oct 2006. He seems to be progressing rapidly. We joined the ALS foundation right away, but just recently joined the MDA foundation. We did not realize they were connected in any way. We have learned a lot in the past few months and I'm sure we have a lot more to learn about this disease. The mda told us about these forums, and we are glad to join them. Look forward to talking to others in our situation. Have a great day. Sharon(indianchic)
Al
05-10-2007, 07:28 PM
Hi Sharon and welcome. Hope we can help.
AL.
AL.
candd
05-11-2007, 11:27 AM
It blows me away...the connections that have been made via forum. Personally, there have been only 4 on my end - quess I've always been slow to warm. So....on some good advice (thanks Al), I'm seeking info on a couple of issues: 1. the drugs that people are on...I'm on 4 and the Dr. wants to up one of them because 2. the achiles tendon pain that started a few weeks ago - does that sound fam. to anyone else?
Awaiting some feedback....................
candd
Awaiting some feedback....................
candd
indianchic
05-11-2007, 12:19 PM
I'm not sure if it is the same thing, but my husband has severe charlie horses in his lower calves. He takes Neurontin for them and it helps tremendously. He use to have them constantly. Now he only has them occasionally and they are not near as severe.
MtPockets
05-13-2007, 02:55 PM
Information was just released this week that doctors have been told to use neurontin for everything they can think of.
Partial Quote:
Neurontin was approved only for add-on use in epilepsy, and only up to 1800 mg dosage. There are about 2 million people in the US with epilepsy - a relatively small market.
To have obtained FDA approval for other uses of Neurontin would have been expensive and time-consuming, with approval possibly not coming until the patent ran out - at which time generics would become available and the profits would drain away.Complete info can be found at: http://bipolar.about.com/cs/neurontin/a/neurontin_suit.htm
I leave it up to you to form your own opinion. I was on neurontin for over 5 years at 2400mg per day and have noticed no difference since I stopped using it, over 3 years ago.
God Bless
Capt AL
Partial Quote:
Neurontin was approved only for add-on use in epilepsy, and only up to 1800 mg dosage. There are about 2 million people in the US with epilepsy - a relatively small market.
To have obtained FDA approval for other uses of Neurontin would have been expensive and time-consuming, with approval possibly not coming until the patent ran out - at which time generics would become available and the profits would drain away.Complete info can be found at: http://bipolar.about.com/cs/neurontin/a/neurontin_suit.htm
I leave it up to you to form your own opinion. I was on neurontin for over 5 years at 2400mg per day and have noticed no difference since I stopped using it, over 3 years ago.
God Bless
Capt AL
indianchic
05-13-2007, 03:16 PM
Maybe neurontin isn't for everyone, but my husband swears by it. He is on the highest dose, 3600mg. If he misses one does, then he has severe cramps in his legs. We can truly see the difference. Guess different drugs work better for different people.
MtPockets
05-13-2007, 03:17 PM
Another suggestion to help with the charlie horses is to use over the counter Quinine. It can be found at most drug stores, and I use it about 2-3 times a day depending on the spasms.
The other medicine would recommend would be baclofen which you would have to get by RX.
I hope this helps, I know what he is going thru, been there doing that.
God Bless
Capt AL
The other medicine would recommend would be baclofen which you would have to get by RX.
I hope this helps, I know what he is going thru, been there doing that.
God Bless
Capt AL
Ashley0607
05-14-2007, 03:19 AM
my name is Ashley. My finance was diagnosed with juvenile ALS. He was diagnosed at age 18 he is now 24. It has affected him in many ways, it is not as severe as other cases I have read about. The doctors tell us that we will just have to wait and see how quickly it progresses. It could be a few years or a few months before he gets worse. With him this is a topic that can not be discussed. Most of what I have learned is through my own research. I need advice on what I should do to help him deal with his ALS. As much as he doesn't want to talk about it I need to know what to expect if we are going to be going through this together. So any advice or places for information would be appreciated. Thank You.
CindyM
05-14-2007, 11:08 AM
Hi Ashley. I am sorry to hear about your finance. I am glad you found us, thought, because this forum is a great place fro support and information. Feel free to poke around and ask whatever is on your mind. You'll find a wealth of information by searching the threads and people will be checking in as the day goes by,so you will have moretime to "meet" some of our great members. Cordially, Cindy
MtPockets
05-14-2007, 11:13 AM
Hello Ashley, and welcome to the forum. Your fiance is blessed to have you standing by his side during this difficult time.
If you could share with us some of the symptoms he is having it would give us a better idea of what stage he is in with the disease so we could offer better advice.
Normally, I would say wait until he wants to talk about the disease, but since he has had it for such a long time, I think he may need some help in opening up to anyone. There are over 2000 of us on this site who are going through what he is facing every day. If you could somehow get him to read some of the messages on the site he might feel better talking with one of us. Just a thought. I hope he will take a look and know that he is not alone.
I was DX in May 2006 and am in a wheelchair due to loss of the use of my legs. This ALS goes at so many different ways for each person that there is no hard and fast rule about what to expect.
I hope you will feel at home here on the forum and get the help you are looking for to help your fiance.
God Bless
Capt AL
If you could share with us some of the symptoms he is having it would give us a better idea of what stage he is in with the disease so we could offer better advice.
Normally, I would say wait until he wants to talk about the disease, but since he has had it for such a long time, I think he may need some help in opening up to anyone. There are over 2000 of us on this site who are going through what he is facing every day. If you could somehow get him to read some of the messages on the site he might feel better talking with one of us. Just a thought. I hope he will take a look and know that he is not alone.
I was DX in May 2006 and am in a wheelchair due to loss of the use of my legs. This ALS goes at so many different ways for each person that there is no hard and fast rule about what to expect.
I hope you will feel at home here on the forum and get the help you are looking for to help your fiance.
God Bless
Capt AL
Lorie
05-17-2007, 04:46 PM
Hi! My name is Lorie, I have a brother with ALS. I am already very thankful to have joined this site. I can't sit back and do nothing. I am dedicated to my brother and others like him. Thank you all for being here.
Lorie-New Member
Lorie-New Member
CindyM
05-17-2007, 07:32 PM
Welcome Lori. Sorry to hear about your brother. Write and tell us more sometime! Cindy
Frizzel
05-17-2007, 08:21 PM
Hi Lori,
You may want to let your brother know about this website. I have met some very interesting characters here who are living with their diseases with more gusto than many of the people I know who are physically healthy. Most of the people here are sharp, articulate and have a knowledge base that not only opens the opportunity to learn but to keep growing. Many of us use humor to keep our spirits up. MND's are such are horrible diseases and still the people you find here are full of life. I hope he can flow with life as you go through this with your brother.
Greet him from the 'Fantasic Forum'~
Frizzel
You may want to let your brother know about this website. I have met some very interesting characters here who are living with their diseases with more gusto than many of the people I know who are physically healthy. Most of the people here are sharp, articulate and have a knowledge base that not only opens the opportunity to learn but to keep growing. Many of us use humor to keep our spirits up. MND's are such are horrible diseases and still the people you find here are full of life. I hope he can flow with life as you go through this with your brother.
Greet him from the 'Fantasic Forum'~
Frizzel
Marilyn
05-24-2007, 08:45 PM
David, I am so grateful that I finally found this site. I've had ALS for about 2 years now and glad I'm not alone in this journey, have a great evening
Al
05-25-2007, 12:03 AM
Hi Marilyn and welcome. Feel free to jump in with comments or questions. Glad you found us.
AL.
AL.
jimercat
05-30-2007, 11:40 PM
Hey!
I've responded to questions on the forum, but I have not introduced myself.
My husband has ALS... Diagnosed 09/06.
He is the most wonderful, outgoing person I know.
He doesn't look at the ALS sites and that's fine. I am thankful y'all are there.
cj
I've responded to questions on the forum, but I have not introduced myself.
My husband has ALS... Diagnosed 09/06.
He is the most wonderful, outgoing person I know.
He doesn't look at the ALS sites and that's fine. I am thankful y'all are there.
cj
sunnydays
05-31-2007, 09:23 PM
Hi, all. I hope you know how much you are appreciated. We have been "dealing" with ALS for about six months now. Many times I feel so discouraged but knowing we are not alone is so comforting.
My 49 year old husband was diagnosed in Jan. 07. I can't say anything everyone else hasn't said.
I do have some questions...
He has been to the Univ. of Kansas dept of Neurology. Any opinions?
Also, a dr. in Tulsa, OK has recommended a Patricia Kane in Pennsylvania. What is that about? His information is a bit confusing.
Thanks,
Hoping for sunny days
My 49 year old husband was diagnosed in Jan. 07. I can't say anything everyone else hasn't said.
I do have some questions...
He has been to the Univ. of Kansas dept of Neurology. Any opinions?
Also, a dr. in Tulsa, OK has recommended a Patricia Kane in Pennsylvania. What is that about? His information is a bit confusing.
Thanks,
Hoping for sunny days
jimercat
05-31-2007, 09:42 PM
Hey sunnydays-
My husband is 48. Isn't this a fine kettle of fish?
As to Patricia Kane I would like to direct you to another forum where you can form your own opinion: als.net
search using her name and you will find a couple of threads about what people have been thru.
can't say anything about U of K neuro.
Best of luck to you and your husband.
cj
My husband is 48. Isn't this a fine kettle of fish?
As to Patricia Kane I would like to direct you to another forum where you can form your own opinion: als.net
search using her name and you will find a couple of threads about what people have been thru.
can't say anything about U of K neuro.
Best of luck to you and your husband.
cj
sunnydays
05-31-2007, 09:59 PM
Aaahhhh. Doesn't sound too promising, does it? As I said, she was recommended by a doctor. Thank you very much for the insight and information.
A fine kettle, yes indeed.
Thank you again and good luck!!
A fine kettle, yes indeed.
Thank you again and good luck!!
CindyM
06-01-2007, 09:33 AM
Hello Sunydays. Welcome to our little corner of the internet! I am sorry about what is happening to your family. Try to remain strong and know that you are not alone. Regards, Cindy
MtPockets
06-01-2007, 12:13 PM
Welcome to the forum. I hope you will the support and and encouragement we are all sending your way.
God Bless
Capt AL :)
God Bless
Capt AL :)
AngieH
06-02-2007, 01:20 AM
Hi My husband was dx 2weeks ago @ 39yo
Al
06-02-2007, 01:00 PM
Hi Angie and welcome. Sorry about your husband. Can you give a bit of history about him. How long has he had symptoms and what type? Hopefully we'll be able to help and support you and your family.
AL.
AL.
Frizzel
06-05-2007, 05:47 PM
I do know that I take a super food with various supplements which include, Greens. I also take CoQ10, EFA's, Vitamin C, Quinine and a super B complex, Bee Pollen from our area with Propolis and Royal Jelly...I stay away from all artificial sweetners as much as possible... Also keep white flour and sugar to a minimum. Although chocolate is a must! ha ha~! Are these things stopping the progression? no...are they helping me glide a little smoother with the progression? yes We each have to find what works for us. I believe in doctors, medicine and natural foods with alternative treatments all knit together...That's what works for me. My hope is to keep an open mind without being sucked into the dark SCAM hole.
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