I'm worried about what lies ahead...my husband has been diagnosed with ALS. It started with his speech. We are waiting for the lithium trials to start. Any advice?
I'm worried about what lies ahead...my husband has been diagnosed with ALS. It started with his speech. We are waiting for the lithium trials to start. Any advice?
Hello, my name is Marcy. I had a brother that passed away in Jan. he also started in the speech.
I went to Washington DC and they talked about the lithium trial and did not have much to say about it at this point.
Remeber to pray, love him more than ever, be there by his side. With the love and devotion that helps them win this disease. When I say win, I know my brother won it. My brother had this disease for 12 years and to me he won.
If you would like to email me I would love to talk.
Smilef@aol.com
Hang in there. Smile and take everyday one day at a time. How old is your husband? Any children?
I will pray and think about you.
What stae do you live in?
hi,i'm shoshanna from israel.take one day at a time,and never ever give up hope.i have a.l.s. for many years and am vent dependent now 13 years.as the saying goes "yesterday is gone,tomorrow is a mystery,and today is the present,therefore it is a gift."my e-mail is jjfahima@netvision.net.il.we can talk and i'll be praying for you all here in the Holy Land.G-d bless and hugs and smiles from me the green smile -shoshanna :) :) :)
Thanks for your reply...12 years gives me hope. At what point did your brother require 'round the clock care? Right now my husbands only real problem is speech...although I notice that eating dinner for him is take somewhat longer. Right now he is up on a ladder painting trim on the house. He has gone through quite a number of tests, tests that one prays comes back negative, but he is hoping for a positive..anything but als. Did your brother ever have a wheezing spell? The doctor chalked it up to allergies and not the als. Take care
Hi - My mother died 2 years ago. She had ALS. Like your husband her symptoms started with her speech, and her swallowing. She began to slur her words and started to cough, particularly when she tilted her head back. She had the usual batttery of tests - blood work, EMG, MRI etc.. all of which came back negative. At the time of her diagnosis she was a strong and active woman. Her speech and her swallowing ability continued to decline to the point that her speech coul not be understood and she began to choke when attempting to eat. She had a PEG tube inserted and so received her fluids and nutrition through the tube. She then began experiencing weakness in her left then right arm and hand weakness, and difficulty holding up her head. Her symptoms steadily progressed over a 2 year period. She never completely lost the ability to walk with assistance and had very limited use of her right arm. She chose not to have a ventilator support her breathing and so died 2 1/2 years after being diagnosed. As you can see from the other posts people live with ALS for many years depending on if they choose ventilator support and tube feedings.
I think that each persons journey is very personal and that the decisions that you and your family make have to work for you. There are no clear right or wrong choices. Remember to cherish every day. It is important to talk to each other about how each of you are feeling. Sometimes you will support him and othertimes he you. Remember that although you walk the road along with him it is his journey. He will have alot of tough decisions to make. Decisions that you may not necessarily want him to make. Talk about his wishes regarding tube feedings, ventilator support, how do you feel about these interventions. How he chooses to live his life will in large part determine the length of his life. Lastly there is alot of support through the ALS association. Use them as a resource. Loving each other will help support you through this. Our family grew closer throughout my mothers illness. We learned alot about love and sharing and dignity. I wish you the very best. If I can help please let me know.
I total agree. You must listen to what your husbnad wants. I can remeber when my brother, was told that he needed to either get the vent or die! I was the person the doctor told. He told me he had about 3 months to live. I was so afraid to have to go and tell my brother. AS A FAMILY WE ALL WENT AND TOLD SAM. He was totally against it. After sleeping on it he decided that it was what he wanted. I called the doctor and they sent him up to have this take place.
With the love and devotion anyone can live if they want to.
8 weeks before Sam passed he decided he no longer wanted to go on. I was hurt and upset but understand know it was a long walk for him. He really had no life. This disease takes everything from the patient and the family taking care of them. It is really sad.
My brother started just like your husband. He lost his speech very very fast. It sucked. We would get paper and pen and go through the abc's till we knew whatr he was trying to say. Than we got an eye glaze for the computer whihc worked very well up until last summer one year ago. 1 year ago was when we saw him struggling to explain what he wanted or needed. It was really sad.
Just love him and be there for him. I am very sorry you have to go through this.
Hold your head up and please email me directly if you would like to talk.
Smilef@aol.com
I am a little over a year into ALS with Bulbar Onset as your husband appears to have. Like your husband, I am doing virtually everything that I have done in years past save for speaking. Unfortunately, the progression of ALS is different for each PALS so I am not sure if you really can gauge what to expect based on how others are doing. However, what I can say with certainty as a PALS is that this disease will be tougher on you as the care giver. I know that may sound odd at first, but your husband is in the game and is likely focused on what makes him feel better and is determined to slow the progression. Your husband will make peace with the ultimate outcome long before you and will find joy in what life has to offer both big and small. You on the other hand are likely to have a variety of fleeting thoughts none of which are particularly good. I would suspect that you will have periods of anger, guilt, self pity, helplessness and a fear of the unknown. These are all normal thoughts and part of wrapping your brain around what is happening. As long as you don't allow these thoughts to fester and dominate the mood and discussion in your home, this is a natural response as far as I can tell in my experience thus far.
With that as a back drop, I would say the following points have been instrumental in keeping my sanity through this whole process.
* Prepare a self mission statement that you read daily or more often on bad days. This will help keep you in the right frame of mind and keep you properly focused, which are paramount. (I am happy to forward mine if you would like an example).
* Reach out to your local ALS Association representative. My experience has been that they are special people and provide a wealth of practical knowledge.
* Take a front seat in your own medical care. Let's face it, there are so many unknown aspects to this disease I am not convinced there any experts at this time. Your doctors will appreciate thoughtful questions and they will need your open and honest feedback as to what is working and what isn't.
* Plan, plan, and plan some more. This includes financial planning, estate planning, care planning, home modifications, living will, etc. Personally, I am planning on a PEG tube but I am still undecided on ventilation. I am also learing sign language as my wife and kids have a relatively good handle on it. Those are the kinds of discussions that you need to have.
* As a care giver, it is paramount that you stay up and positive around your husband. Nothing is more deflating to a PALS than having the spouse down in the dumps. You may very well earn an academy award, but you must stay positive. Find someone and somewhere away from your husband when you need to vent.
* Focus on living with passion as unfortunately the dying part is going to take care of itself.
I hope this helps in some small way. I wish you and your husband well. Know that you are not alone and reach out as often as needed. The warm embrace of the members of this community is far reaching and always available. God Speed!
I have to agree. When my brother was first diagnosed I did not believe that was what he had. I had them test him for everything. Sam went through ever test I wanted him to go through. He was hoping for anything but ALS.
Anyways.... reach out. If people want to help, let them help. Sometimes you will find you will need a break. I know we alway want to do it ourselves but let others help. Have friends over. People around alway help ease the pain.
If you ever need anything feel free to email me directly at Smilef@aol.com
Spend every minute you can with your love one and alway remeber they will love you for what you are doing.
Being a care giver is not for everyone but boy is it rewarding after all.
Hang in there. Smile, hold your head up and remeber take everyday one day at a time.
hi
im supposed to start lithium tommorrow. i have same onset as your husband. i will be in touch
Where are you getting the lithium from? My husband is desperate as symptoms are starting to progress. I've called our GP and he won't issue the presc. We are considering calling a physchiatrist. We are in New Jersey. (southern part).
To smilef....I know all about being a caregiver...I lost my Dad a few months ago my mother has dementia....always wondered when I would feel like an adult well....now I do and I'm not liking it. Anyone for a pity party?
HI
I AM IN LAS VEGAS. MY NEUROLOGIT IS STARTING ME ON LITHIUM. I HAVE TO SIGN A PAPER WITH HIM SAYING I WONT HOLD HIM RESPONSIBLE IF IT DOENT WORK.
THE ALS CLINIC HERE IS STARTING CLINICAL TRIALS ON LITHIUM BUT THEY ARE ABOUT TWO MONTHS FROM STARTING IT.DO U HAVE A NEUROLOGIST. DID U LOOK UP THE STUDY IN ITALY. MY NEUROLOGIST SAID IT IS ENCOURAGING. I PRAY THAT IT WORKS FOR ALL OF US.
Yes...he has a neurologist, who when asked for lithium, wouldn't prescibe it. We are seeing another neurologist in a few weeks (appts. are hard to come by!) who also said he would write a prescription. I too pray that it works for all of you.
bigal...how are you doing on the lithium? We still can't find anyone who will prescribe it for my husband...
hi
i started it last monday. i am taking 300 mg twice daily.
it is lithium carbonate. i seem to be accepting it well.it takes 5 days to two weeks to take effect.if you look at lithium in wikipedia it says right in there that als is being treated with lithium. i print out this information and take it or send it to my doctor.i have had several drs tell me that marijuana elps also.i havent tried that but i am open to it.there is a video explaning that. what is your e mail address,i will send that to you.i had to sign documents with my dr releasing him from responsibility if the lithium doesnt work. maybe your dr could talk to him. let me know.
luv ya guys
al
I just found out I had ALS also.
I have researched and continue to research ways to try to beat this thing.
But what I do know is that A Positive Mental Approach and Prayer will get you through each day.
My prayers are with you.
Let me know...maybe we can get through this together.
Chuck
Pray and hope are two of the most important things in this battle.
I promise you that. My brother would of never made it 12 yearsif it was not for pray and hope.
God Bless all of you.
I am here for you!
Marcy
Smilef@aol.com
Keep searching for a neurologist that will prescribe Lithium and Rilutek together. I am on the East Coast and if patients ask for it, they are getting it. Try a "teaching hospital" near you or contact the ALS Association for a referral to a neurology or ALS clinic. There is nothing to lose, and perhaps a lot to gain : ) These drugs are not experimental in the US for other conditions, so there is really no reason to hold back. Most likely a neurologist will be the only type of doctor that is going to prescribe these drugs. Hang in there!
Hi
I saw that you said you had a mission statement.
Could you send it to me?
Thanks.
Chuck
My husband has had a rapid decline with ALS although he is able to talk. He had a total respiratory collapse followed by trach & vent which actually improved his quality of life. I've been a caregiver for 18 months & it is difficult. Everything is new - treatment, equipment, assistance, insurance, medicare etc. Two people on this site have been particularly supportive but everyone has been great to share experience & ideas.
The ALS rep is an excellent source & you go from there. We currently have an aide, two nurses who alternate, a respiratory therapist & physical therapist as part of our team. I absolutely leave this house twice & sometimes three times a week for at least four hours. You will need this along with a plan for adequate sleep. Accept all help because eventually you'll need it - at first I was reluctant but now I'm grateful if someone else prepares a meal, runs my errands etc. Treasure your friends & keep up your normal life .
My husband has a great spirit & sense of humor so we are blessed.
This is my practical approach to what you can expect.
I'll pray for you & if I can help, please contact me directly pfowler11@cfl.rr.com.
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