Dad has ALS

I haven't been back to this thread in awhile either. My nephew cannot move anymore. He can only eat soft food and cannot speak. He does not want a feeding or breathing tube either. His parents and wife are complying with his wishes. I feel like this may be his last year. :grouphug: to all coping with this horrible disease.
 
I am so sorry to hear this about your father. I will keep you all in my prayers. Please feel free to come here and talk. Talking about what you are dealing with really does help.
 
To the original Poster,

My prayers are with you and your Father.

My husband died of ALS in 2005. He was 45 years old. He had a bulbar progression (starting in his voice, throat).

The one thing about this disease is that some seem to have a slower course than others. There is a man named Steven Bishop who has been diagnosed more than 6 years ago and he is progressing very slowly. you can google his name and "ALS" to find his website.

We got involved in our local MDA office, and also into a clinical trial. I would suggest looking into things like that. The MDA is especially good at helping a family prepare for the kind of care an ALS patient might need.


-Marti
 
I am very sorry to hear about personal and family diagnoses and struggles. I personally do not know anyone with ALS but a friend's mother recently died of ALS. As a result a friend of mine, his wife and 2 of his colleagues made a short documentary about ALS and submitted it to the cannes film festival. They won! They then spent a few months touring Canada filming documentary about fundraising and will submit it for again this year. I think it is a great thing they are doing and wanted to share it with you all. they spent a lot of their own money and time to do this great deed for ALS!

http://www.alsacrosscanada.com/
 
I am very sorry to hear about personal and family diagnoses and struggles. I personally do not know anyone with ALS but a friend's mother recently died of ALS. As a result a friend of mine, his wife and 2 of his colleagues made a short documentary about ALS and submitted it to the cannes film festival. They won! They then spent a few months touring Canada filming documentary about fundraising and will submit it for again this year. I think it is a great thing they are doing and wanted to share it with you all. they spent a lot of their own money and time to do this great deed for ALS!

http://www.alsacrosscanada.com/


Cool, disneyfreak. Thank You!
 
I have a thread started called "what is this" can anyone tell me if any of my DH symptoms actually rule out ALS? Here they are - I'll give you everything because I don't know what's related to his neurological disorder (whatever it ends up being) or not:

-myoclonic seizures (non-epileptic) (does not happen when sleeping)
-stumbles and sometimes falls when walking (this actually has been happening for a couple years but has progressively gotten a ton worse in the last 8 mo. or so. ie he went from it happening once every other week or so to 4 times just walking across the room)
-numbness in left arm from elbow to fingertips
-dizzy when standing up
-burning sensation in back of head that spreads from right to left followed by a numbing sensation (usually happens only when exerting himself like playing with our kids)
-shortness of breath (only complained in the last mo. or so)
-chokes on saliva (in the last week or two) because he says can't swallow (happens a handful of times per day)

We're not having much luck with doctors and after a bad experience with a neurologist he hasn't wanted to go back. (I don't think he's seen a doctor in the 10 yrs I've been married to him). :grouphug: to everyone dealing with this disease. Hopefully someone can point me in the right direction. For some reason the two doctors dismiss (too quickly for my comfort) the falling, head pain, and numbness as being related to whatever neurological disorder he might have. But when discussing him with my endocronologist (thyroid:rolleyes: ) he said, "of course it's all related!" So, what do you think...?
 
Initial Symptoms of the Disease

At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.

Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.

Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.
http://www.alsa.org/

The above is copied directly from the ALS web site that I have also posted. DO NOT TAKE THIS AS A DIAGNOSIS OR MEDICAL ADVICE but if it were my self of my spouse there would be no hesitation in getting him to a top neurologist in your area. You can use the web site to look up ALS clinics in your area. Best Wishes, Cindy
 
Udpate on my dad:

Yesterday he went for his 6 month check up. The doctor said that his ALS is progressing slowly, which is good. He was also told that it has moved to his other leg, and he has lost use of his fingers on his left hand. He is in good spirits, and thought it was a best report he could get.
 
Udpate on my dad:

Yesterday he went for his 6 month check up. The doctor said that his ALS is progressing slowly, which is good. He was also told that it has moved to his other leg, and he has lost use of his fingers on his left hand. He is in good spirits, and thought it was a best report he could get.

That is good that the disease is progressing slowly. I am glad to hear your dad's spirits are good.

My dad goes in next month for his ALS check up. Although we know the report won't be good. He has had a lot of progression over the last month, including his 'good' leg suddenly gave out on him and he can not walk anymore, even with assistance.

I will keep you and your dad in my prayers and thoughts! Thanks for updating us.
 
Sillygirl30,
I'm glad your dad is doing okay so far, and that the progression is slow.

Our news unfortunately is getting worse and worse. My father in law can't do anything for himself anymore. He's on oxygen all the time now, which is not a good thing for ALS patients because they can't dispell the carbon dioxide. But the doctor has told us to basically let him have as much as he needs or wants and that he really doesn't have to come back to the doctor anymore. The constant oxygen is making him very forgetful, and he's starting to get defiant and a little mean towards my mother in law. It's almost like he has alzheimer's, too. We're getting to the point of needing more help than we can give him at home, so we will probably be taking him to a nursing home soon. It's a very hard decision to make for eveyone. But, it's affecting my dmil so much; she can't do everything for him anymore; he's a pretty big man still, even though he has lost a lot of weight. And we all live an hour away from them.
I really hate this disease, and I really feel for all of you that are being affected by it. It's been a long hard road for all of us, but especially for dmil.

My best wishes for all of you, and I will keep you updated as news develops.:grouphug:
 
:grouphug: No advise here. Just felt compelled to let all of you who have posted here who's family members are suffering that you are thought of. May your faith help you through the rough times-stay strong.:angel:
 
Well, as the granddaughter and daughter of ALS victims, as well as a registered nurse, I recommend you love and care for him as much as physically possible. I also don't know if any hospice care is an option but I highly recommend you also investigate those services as well. If your father in law has Medicare it is covered 100%. Best wishes and hugs for your family, Cindy
 
Breez I don't know where you are in Ohio but have you gone to Cleveland CLinic?? They are awesome as far as Neuro goes. ONe thing I have learned there are a HUGE number of Neuro disgnosis and many times people have a combo dx or a "unusual" one. Please consider Cleveland Clinic.

HTH!
 
Thought I'd send a very unhappy update.
My father-in-law passed away on Friday morning. As we prayed for, he just peacefully quit breathing in the middle of the night. He slept with one of those big masks on, and my mother in law said it was sounding funny. When she tried to wake him, he was already gone. We had the funeral yesterday. It's been a very hard road for everyone, especially for dad, and mom. We hate that he is gone, but we are happy that he is in a much happier place and that he is no longer suffering.
My heart goes out for all of you who may be going through this disease, whether it be yourself or a loved one.:grouphug:
 
:sad1: I am so sorry for your loss. Remember the happy times and that your FIL is in a better place, whole again. Cindy
 
Thank you so much, Cindy. :hug: It helps us so much to know that he is not suffering anymore.
It's funny; you never know how many lives a person touches until after they die. I've never seen so many people at a wake in my life. They come from a small town, and everyone knew who he was and liked him very much. That in itself has helped the family tremendously.
 
Thought I'd send a very unhappy update.
My father-in-law passed away on Friday morning. As we prayed for, he just peacefully quit breathing in the middle of the night. He slept with one of those big masks on, and my mother in law said it was sounding funny. When she tried to wake him, he was already gone. We had the funeral yesterday. It's been a very hard road for everyone, especially for dad, and mom. We hate that he is gone, but we are happy that he is in a much happier place and that he is no longer suffering.
My heart goes out for all of you who may be going through this disease, whether it be yourself or a loved one.:grouphug:


:hug: my thoughts and prayers are with you and your family during this loss. And also with anyone dealing with this disease. :grouphug:
 
Breez I don't know where you are in Ohio but have you gone to Cleveland CLinic?? They are awesome as far as Neuro goes. ONe thing I have learned there are a HUGE number of Neuro disgnosis and many times people have a combo dx or a "unusual" one. Please consider Cleveland Clinic.

HTH!


We went to the Cleveland clinic (I go there for thyroid), and had a terrible experience there (for him). He was only tested for cancers and had an EEG to rule out epilepsy. He also only saw his neurologist for about 5 min., was told to call with new symptoms. He became much worse after his visit and had plenty of new symptoms - when he called to update neurologist he got yelled at by the Dr.s secretary. We also waited for about 2 months for the test results and were only sent a copy of his blood work and a letter saying no epilepsy. With the new symptom of choking on his saliva, I forced him to go see a local neurologist today (I'm giving an update on the what's this thread - sorry OP for the OT). :confused3 They were perplexed and ordered a bunch of new tests, so we'll see...thank you for your suggestion. I'm not sure if he has ALS. I'm not sure what he has at all. With the research I've done, I know ALS is a horrific disease and my compassion goes out to all who are living with this and to their families. :grouphug:
 
Oh Chickie, I'm so sorry for your loss.

I was just told today by my neice that they are saying my nephew has at the most 6 months left.:sad1:
 

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