New? Introduce Yourself - Say Hello

Status
Not open for further replies.
Welcome Merle. You've got the right attitude and a bucket of cash I suspect. Both help with this disease. The best advice we give is take each day as it comes. Feel free to give us your perspective from down under. We're all different with this disease but basically the same. AL.
 
Hi all

Hi all,
My name is Danny and I was my mum Lynda’s carer until she moved on to a better place on the 13th of July 2006, she taught me many things throughout my life, but while she was battling with MND my mum taught me what true strength and courage really are. I set up a web site for my mum to tell her story and a place where people who have been touched by this horrible disease can come to find useful help and advice, I am in the process of updating the site at the moment so if you look at it and have any constructive criticism then please don’t hesitate to get in touch.
About two years ago my mum first started to notice a problem with her speech, a slight lisp which progress to a major problem with speech. She went to her Doctor at the time and was told ‘you are a hypochondriac’ and told to go away. My mum knew there was something wrong and started searching the net for answers, my mum diagnosed herself with ALS. While visiting a physio therapist about a problem with her foot, the physio therapist agreed that there was definitely some very serious wrong. After a series of tests, some of which were horrendous, she was officially diagnosed with MND.
I wish I had found this forum a year ago as there were so many questions that went unanswered.
Danny
 
Hi Danny. Welcome to the forum. So sorry about your dear mother.

I just read what someone else wrote about ALS and how it can stand for "About Loving Someone". I like that.
 
Hi Danny. So sorry about your mum. I hope you can find some solace here and possibly help with advice and support for the others that are affected by this disease. I know it can be hard to lose someone but the rest of us can still possibly have a better day with your help and insight. AL.
 
Hi Danny....sorry to hear about your loss. I am interested in visiting your web site. Can you pass along the web site address. My mom was diagnosed with MND in June 2006. Her speech is very bad and has some difficulty swollowing and with the saliva build up. The only positive thing is that her mobility is excellent and her emg back in June showed no muscle weakness. She has had gradual symptoms for two years and finally her speech started to go in April of this year. I am really scared as to journay that we will be taking. Once again I am really sorry that your mom has passed, but I am certain she is in a better place. I always tell myself that this life we live is the Hell and there must be better when we pass. Life always faces us with so many challanges.
Danny....only times heals the pain that your are feeling....God Bless. Anne
 
Welcome Danny,

I am sorry for your loss of your mum. My husband is suffering with this horrible illness and is very ill right now. I am taking great care of him. There is not a minute goes by that my heart is not breaking. I am glad you found this site here, everyone here is so kind and caring. We all help each other get through another day.

Sandy.
 
hi, new to board

My husband is in the process of being diagnosed. Local drs think it is MND. We go to Emory Sept 21. Have been waiting 4 1/2 weeks already. I have been warned that we still might not know anything for sure for a while. The waiting is tough. My husband has been having the bulbar symptoms. Slurred speech, sometimes trouble getting a word out, swallowing difficulties, breathing problems, excessive saliva, stiff calf muscles, all over body muscle aches, uncontrolled laughter, coughing and excessive clearing of throat and some jaw problems. It really is like a nightmare. Is this really happening? God has given me strength each day, but it still seems unreal. We live across the line about 7 miles in Alabama, but are going to Emory in Atlanta to see the neurologists.
gapeach
 
Hi peach. Welcome to the site. Waiting is probably one of the hardest things to do. There is a site in Georgia called the ALS Patient initiative that will send you information and resources in your area of the states. The site is at www.als-link.org. Feel free to ask any questions here. We're a pretty informal group. Take care. AL.
 
Last edited by a moderator:
starting new thread

I know how to reply but do not know how to start a new thread. Can you tell me how to do that?We went to visit our local neurologist a couple of weeks because my husband was having pain in his muscles to get something to help him and the neurologist put him on temporary disability. We were quite shocked and told him that he has MND. I thought he had some type of MND but thought he would at least be working until we went to Emory the 21st or at least for a while after until other symptoms. So far we don't see any limb involvement except for stiffness in calf muscles but he is so fatigued. He has the bulbar symptoms mostly with emotional lability right now. Is that normal to put them on temporary disability already?
gapeach
 
Hi gapeach. When you first click on the large heading or link General discussion and the page loads with the topics listed there is a box in the upper left corner New Thread. Click on it and type in your topic and message and submit and you're in business.
As far as the disability goes it is usually up to the Dr's discretion but he usually consults with the family to see if they want that. Maybe you gave him the idea and didn't realise it. If it concerns you I'd call him to talk about it. AL.
 
Working

The neurologist said he is not working is he? I said yes, 50 hours a week and he said no he doesn't need to work at all but go home and rest. We were shocked and didn't really ask many questions after that except I asked him how could he put him on disability without knowing for sure if he had MND and he said i know he has MND. Bring the papers in I will sign them. We weren't prepared for that and just were shocked. We asked alot of questions about the MND and were prepared for it but that just knocked us out of the water.
gapeach
 
New - caregiver offers support

My husband passed away on December 2005. I want to offer my support and share my experience with people that are going through the same process.
ALS is a horrible deseas, it is always difficut to see a loved one suffer. Daniel was only 44 years old. ALS left our 15 month old baby without a father.
Share the tears, it helps!
 
GaPeach

I am so sorry to hear of what you and your husband are going through. I can identify with some of it to a point.

18 years ago I was a workaholic in the best job I had ever had in my life loving every minute of it and not prepared for what was to come. I had very little savings, then it happened. I had a plane accident in Alaska and boom overnight I was on disability. My income was not enough to live off of and I had to go to court to get workers compensation since it was an on the job injury. It took over a year before my case was heard. Meanwhile, I used all my saving, and made the best of a bad situation. Overnight my whole life changed, I had to return to the Mississippi coast to see a neurosurgeon and receive treatment, and here I am today.

I loved ALaska, I loved my job, and I felt I had disappointed my family, wife, and 4 kids, because now I could not provide for them as before. I became suicidal, and had to go for help to adjust my outlook on life. I thought life was not worth living.

Now 18 years later I have adjusted, become a Christian, and love every minute of life and BAM I get DX with ALS. It's ok though because I am happy with my life and what I have been able to do even with the disability. I now have 4 children, one is a doctor, one is about to graduate as a Lawyer, one is a social worker with the Katrina victims, and one is a Deputy Sheriff. I also have 14 wonderful grandchildren.

I'm saying all this to let you know your husband needs moral support at a time like this. He needs to know you love him and are willing to do anything to help him during this horrible time or he might just give up. Emotional encouragement is very important for him at this point. Try to let others know that he need encouragement that this is something he is not going to go through alone. He probably is not telling you what he is thinking, how he might be giving up, or how he feels there is no hope.

I know you have a lot of "WHY" questions right now, but stop and think about what must be going through your husbands mind. The "WHY" is not as important as forming a plan of what are we going to do now. I don't know you or your husband, but I know how some men react in a situation like this, they give up, and now is not the time to give up. Now is the time to focus on living every day, every moment he has left, enjoying life and spending time with those that he loves.

I don't mean to sound harsh or upset you, I'm only concerned that your family focus on the days ahead in a positive way if at all possible. I know it seems impossible, I've been there, I was DX with ALS May 11, 2006 after 2 years of symptoms. We are all wishing and praying for the best for you and your husband in this difficult situation.

Please invite your husband to come to the forum and let us help him. There are many of us here who who have all stages of this disease, and I know he must have a million questions about what is going to happen to him. We can help answer those questions and help encourage him if he will give us the chance.

God Bless,
Big AL:cry:
 
Sufernan, can you share more of your experience? I visit this site because I am a close friend of a couple (huband w/ALS) - I'm trying to help them learn and gather information as they cope with the overwhelming changes in thier lives.

I'm just wondering if you have any advice for the wife - or insight into the progression. Is there anything you wish you would have known or done differently?

thanks.
 
For Pearl

Dear Pearl,
I have to think about what kind of advice to give someone who is going through what Daniel and I went through. Dealing with ALS is difficult. We cried a lot, we talked a lot, and even in the worst of times, we laughed a lot. Only God knows when you will die, no doctor can tell you. But more important, nothing and nobody can control how you will spend the last days/months/years of your live - you decide that. Daniel and I decided we wanted to be with our child and enjoy him together. We had two years full of joy.
My advice is find support. Be a loving and caring friend. Your friend needs unconditional love and she needs to be around people that will support her and her husband, physically and emotionally.
My heart is with you and your friend and every family who is dealing with ALS.
 
Status
Not open for further replies.
Back
Top