ALS - Lou Gherig's Disease

Posted by seema73 @seema73, Dec 13, 2011

My father just got diagnosed with ALS and I am devastated. There is no cure and I don’t know how long he will have. It is slowly ravaging his body. I am still at the acceptance part. I would love to speak with anyone going through similar circumstances.

Interested in more discussions like this? Go to the Brain & Nervous System group.

I have no experience with ALS but have some with the symptoms. Chocking on swallowing, breathing (sinus).
Chocking on swallowing started when I was drinking lot of salt and water. I started drinking 8 to 10 glasses of water a day. That helped a lot initally but after few days the benefits were reversed. Then salt was added to water as suggested on http://www.watercure2.org. During this phase (lasting about 20 months) I started chocking on swallowing and eating. With time this increased. During this phase I found some water retention in legs and elsewhere.
During this phase my sinus problems became very severe.
After this phase I drastically reduced my water intake to less then 2 glasses of water or other fluids a day. Every now and then I used to give up water and flduis for 24 to 48 hours. During this phase I used to drinking water 1 hour before meal (wherever I had to drink water).
During one sinus episode I gave up water and all fluids for 48 hours. I got relief from soreness of throat in 24 hours. After this period I was at ease to let go my cough. Next few days I got relieved from lot of cough. After this my chest and throat were as great as a clean glass. I never got sinus. Not even slight cold and cough. During this time I got complete relief from chocking on swallowing and eating.

The theory was – after increasing the water intake the dehydration if any is taken care of in 7 to 10 days. After this there was excess of water every where. That causes swelling of capillaries and leakage of fluids. That causes muscle pains, tingling ( I also had tingling which was also progressing with swallowing problems).

When one gives up fluids for 24 hours the urine output increases, the swelling elsewhere in muscles etc reduce drastically. That also eases the breathing. Today at very high speeds of walking for long periods of time (more than 1 hour) I have no heavy breathing. None can hear me breath at all. It is just perfect. Giving up water for 24 hours also increases the blood acids which helps body to fight infections much better.

These days I play badminton once or twice a week at competitive levels with 20 something boys.

I believe that giving up fluids for 24 hours and then restarting fluids after 24 hours in restricted way should help in ALS. When restarting the fluids – drink 1 glass (or less) of water 1 hour before lunch and dinner. Have early dinner. Restrict the water intake to 2 glasses a day. Once in 10 days increase the water intake to 5-6 glasses a day spread evening during day time.

REPLY

My father was also just diagnosed with ALS, his symptoms started showing up about 2 years ago and we were just able to get the diagnosis recently. I have watched helplessly as this disease ravished my father. The chocking associated with ALS patients is not due to any type of water retention or swelling…rather that the loss of muscle mass makes the muscles intended for use in swallowing and breathing weak and unable to perform their intended functions… Seema73: I know what you are going through and I know how scared and confussed you are. I am here to chat with if you ever to need to just vent. Sometimes,when it is your parents who are sick,you feel you have nowhere to turn and its just nice if there is someone who understands. Take care…I know how hard this is

REPLY
@bluedevilmom

My father was also just diagnosed with ALS, his symptoms started showing up about 2 years ago and we were just able to get the diagnosis recently. I have watched helplessly as this disease ravished my father. The chocking associated with ALS patients is not due to any type of water retention or swelling…rather that the loss of muscle mass makes the muscles intended for use in swallowing and breathing weak and unable to perform their intended functions… Seema73: I know what you are going through and I know how scared and confussed you are. I am here to chat with if you ever to need to just vent. Sometimes,when it is your parents who are sick,you feel you have nowhere to turn and its just nice if there is someone who understands. Take care…I know how hard this is

Jump to this post

Hello Victoria, I am so glad to hear from you and I am sorry to hear that your father is also afflicted with this disease. This Thursday will be two weeks since my father’s diagnosis. The past week and a half has probably been the worst week of my life, but now things have settled emotionally for me and I am able to take a step back and get some perspective on it. I have been terribly scared and confused and shocked. I have been reading a lot about it on the internet and I find that as I get familiar with the disease, I am able to understand it more and know what to expect as time goes by. It doesn’t hold power over me as it did in the initial stages. I can cry and ask why and all the other universally questions, but at the end of the day, it is what it is and nothing will change that. I think that grieve is a very lonely business, that’s why it is so important to reach out to others who have been through similar loss and pain, and to find someone else who is going through exactly the same thing is even better, because no one else will truly understand. I am glad, unfortunate as it is, that we are able to share similar stories. What makes it more difficult for me, I suppose, is that my parents live in England, so every time I go to see them, it will be more of a change for me to witness. I feel sad for my mother, as she has to watch this disease slowly take him and has to care for him mean time. He is in the early stages right now. My mom started noticing changes in him in September, and he kept complaining that his legs felt weak and his thigh muscles were wasting away. After many tests and doctors figuring it was medication he was taking that was causing his weakness, they finally realized what it was. He is able to walk holding on to a walker and has difficulty going up and down the stairs. His hands are starting to feel weaker but he can still use them. My parents are in the midst of renovating their home so that they can change one of the downstairs rooms into a bedroom and make a bathroom downstairs as well. That way he can be shifted downstairs altogether, as it is only a matter of time now when he won’t be able to go upstairs.

I think it is also important for me to realize that changes come slowly, because it is so easy to read about everything on the internet and then jump to all the worst case scenarios all at once. That can be too overwhelming and heartbreaking to take in all at once. There are so many people afflicted with this and they and their families are all handling it, and there are so many options to make a person more comfortable. That gives me strength and hope, as no one wants to see their loved ones suffer and leave us. I’m sorry if I’ve gone on a bit here. I didn’t mean to write so much. I hope you don’t mind. I would love to hear from you and see how you are doing…and your father.

Take care.
Best Wishes,
Seema

REPLY

Hello, I am looking to connect with others about ALS-4, a much rarer type. I'm a 31 yo female w/ idiopathic small fiber neuropathy and recent diagnosis of ALS type 4. The disease of this specific type is not fatal, but a much slower progression still affecting autonomic functions etc. I'm considering next steps e.g. research, studies, trials, a new Dr opinion, or possibly even revisiting Mayo Clinc in FL, where I went when I was much younger for a separate condition but was greeted with utmost love and care. Any direction to groups, people, info etc is most welcome. Thanks y'all. Peace and love to anyone out there suffering.

REPLY
@rivermaya34

Hello, I am looking to connect with others about ALS-4, a much rarer type. I'm a 31 yo female w/ idiopathic small fiber neuropathy and recent diagnosis of ALS type 4. The disease of this specific type is not fatal, but a much slower progression still affecting autonomic functions etc. I'm considering next steps e.g. research, studies, trials, a new Dr opinion, or possibly even revisiting Mayo Clinc in FL, where I went when I was much younger for a separate condition but was greeted with utmost love and care. Any direction to groups, people, info etc is most welcome. Thanks y'all. Peace and love to anyone out there suffering.

Jump to this post

Hi @rivermaya34, I did a search of Connect and didn't find anyone else posting about ALS-4. While we wait to see if members with experience can respond, I'm wondering if you have seen these following sites related to ALS-4?

— ALS4.Org website: https://www.als4.org/
— #AANAM — Research Examines Clinical, Genetic Features of ALS Type 4: https://alsnewstoday.com/news-posts/2019/05/10/aanam-research-clinical-genetic-features-als-type-4/

REPLY
@bluedevilmom

My father was also just diagnosed with ALS, his symptoms started showing up about 2 years ago and we were just able to get the diagnosis recently. I have watched helplessly as this disease ravished my father. The chocking associated with ALS patients is not due to any type of water retention or swelling…rather that the loss of muscle mass makes the muscles intended for use in swallowing and breathing weak and unable to perform their intended functions… Seema73: I know what you are going through and I know how scared and confussed you are. I am here to chat with if you ever to need to just vent. Sometimes,when it is your parents who are sick,you feel you have nowhere to turn and its just nice if there is someone who understands. Take care…I know how hard this is

Jump to this post

I would first like to tell you how sorry I am and I pray for you and your dad. I was wondering if I could ask what symptoms where experienced over the 2 years and why it took so long to diagnose..?

I am asking because I have had a couple of EMGs over the last year and they were normal but I continue to have some very odd symptoms that I just find not easily explained.

Thank You

REPLY
@rivermaya34

Hello, I am looking to connect with others about ALS-4, a much rarer type. I'm a 31 yo female w/ idiopathic small fiber neuropathy and recent diagnosis of ALS type 4. The disease of this specific type is not fatal, but a much slower progression still affecting autonomic functions etc. I'm considering next steps e.g. research, studies, trials, a new Dr opinion, or possibly even revisiting Mayo Clinc in FL, where I went when I was much younger for a separate condition but was greeted with utmost love and care. Any direction to groups, people, info etc is most welcome. Thanks y'all. Peace and love to anyone out there suffering.

Jump to this post

Hello @rivermarya34

After reading some of the links that John, @johnbishop, posted I was intrigued by the type of symptoms listed. I'm wondering what symptoms you experienced which led to your diagnosis of ALS type 4.

It looks as if muscle weakness is the primary symptom. Has this been true for you?

REPLY
@johnbishop

Hi @rivermaya34, I did a search of Connect and didn't find anyone else posting about ALS-4. While we wait to see if members with experience can respond, I'm wondering if you have seen these following sites related to ALS-4?

— ALS4.Org website: https://www.als4.org/
— #AANAM — Research Examines Clinical, Genetic Features of ALS Type 4: https://alsnewstoday.com/news-posts/2019/05/10/aanam-research-clinical-genetic-features-als-type-4/

Jump to this post

Hey @johnbishop, thanks for those links!

REPLY
@hopeful33250

Hello @rivermarya34

After reading some of the links that John, @johnbishop, posted I was intrigued by the type of symptoms listed. I'm wondering what symptoms you experienced which led to your diagnosis of ALS type 4.

It looks as if muscle weakness is the primary symptom. Has this been true for you?

Jump to this post

Hi @hopeful33250, the first symptom it all began with was right hand weakness. Luckily, I'm still in the beginning stages so I have a good percentage of functionality still. When looking for the cause of my 'far out' neuropathy, it was discovered thru free genetic testing. Otherwise, I wouldn't have known til way later down the road, so kind of a blessing in disguise. I found a few websites and I've been doing my research, but hopeful to connect with others in that realm eventually. Thankfully, there is always research being done…

REPLY
@rivermaya34

Hey @johnbishop, thanks for those links!

Jump to this post

Hi @rivermaya34, I was hoping they might be helpful but thought you may have already seen them. You might want to start a new discussion specifically for ALS-4 to see if others like you may be searching and see it on Connect and join in the discussion.

REPLY
@johnbishop

Hi @rivermaya34, I was hoping they might be helpful but thought you may have already seen them. You might want to start a new discussion specifically for ALS-4 to see if others like you may be searching and see it on Connect and join in the discussion.

Jump to this post

I think I will do that @johnbishop . Took me a while to find this specific discussion, and didn't see any others that were type specific…Which group do I start it under?

REPLY
@rivermaya34

I think I will do that @johnbishop . Took me a while to find this specific discussion, and didn't see any others that were type specific…Which group do I start it under?

Jump to this post

I think the same group as this one – Brain & Nervous System

REPLY
Please sign in or register to post a reply.
  Request Appointment