Dad has ALS [Archive] - The DIS Discussion Forums

Artoo

06-21-2007, 08:58 PM

Hi everyone...I'm pretty new to the board here, but I'm a HUGE Disney nut (My husband-to-be and I will be going to WDW on our honeymoon on October 1st).
I was wondering if any of you out there have gone through or are going through ALS, or if you have any loved ones who have it. I just found out a week ago that my dad (he's not even 61 yet) has it. I'm really scared and upset, and I'm just trying to find other people out there to talk to about it! I registered on the board and browsed around, pleasantly suprised to find this "Coping and Compassion" forum. So, I thought I would try and see if there was anyone out there who I could talk to about this.

barb/nl

06-22-2007, 12:59 AM

Hi,

I have experienced ALS through my husband and am willing to listen to your concerns and tell you anything I know that might be helpful to you and your dad. A very good place to get a lot of excellent input combined with support and compassion is in the Yahoo Group "Living with ALS"--check it out and let me know what you think!!

-Barb

Artoo

06-22-2007, 11:42 AM

Thanks so much. It's good to know that there are people out there who will understand (organizations, too!). My family has always been healthy and this has been just such a shock to all of us.

barb/nl

06-22-2007, 01:00 PM

Hi,

If you have any questions, feel free to ask them? By the way, are you sure of the diagnosis? Did he get it at an ALS Center? What are his symptoms? Did you get a chance to take a look at "Living with ALS"?

-Barb

Artoo

06-22-2007, 01:12 PM

My dad saw a doctor who specializes in ALS at a nearby hospital. They did a whole bunch of tests on him (blood tests, a "muscle biopsy", spinal tap)...they have ruled out everything else and have pretty much told us it's ALS. He had been walking with a limp for about a year. We thought it was due to a very minor stroke he had, a little over a year ago. It turns out it's more than likely due to this ALS. Plus, now my dad is walking worse than before :sad1:

barb/nl

06-22-2007, 01:47 PM

It sounds like your dad has been getting the right screening. Did he have an EMG, too? Since ALS is actually diagnosed by trying to eliminate everything else, there is always the possibility of error. More than that, there are so many different types and rates of progression within ALS that what you read about ALS can turn out not to apply. The people who seem to do the best are those who actively reach out to the ALS community and find out/contribute as much as they can. They are generally very spiritual and positive-thinking. Some people progress very, very slowly and live for a long time. The positive thinking and joy in the moment helps whether the progression is slow or fast and there is a great deal of very helpful technology available for every stage. So don't be scared--take each day as it comes, enjoy it to the maximum and encourage your dad to do the same! And who knows--there is a lot of ALS research being done and a cure may come at any time!!

-Barb

Artoo

06-22-2007, 02:19 PM

Thanks for all the help.
I believe my dad had the test you mentioned done just recently...I guess it was the last one done, just so they were sure that is what it could be. I've been doing some research about it on the web and when I was at my parents' house for Father's Day, my dad had a whole mess of books about ALS sitting on his table.
I know that every case of ALS is different in terms of how fast it progresses and how bad it could be. When I first started reading about it, I freaked out because it said that the person was expected to live for another 3-5 year (of course, this is Wikipedia). Then, my fiancee reminded me about Stephen Hawking and how he was diagnosed YEARS ago and is still alive and writing books and giving lectures. That made me feel better.

catsrule

06-27-2007, 05:48 PM

Hi! My nephew has ALS, he is only 35. He is right now getting a tube put in his throad to help him breath and eat. He has had it since Feb 06. He has 3 little ones and won't see them grow up. It is a stinky disease and can strike anyone. There is no history of this on either side of his family. Why do some get it? Who knows? :confused3

catsrule

06-27-2007, 05:50 PM

Also, the person with ALS must decide if they want to live like Stephen Hawking. I'm sorry to say this, but most don't.

I am very sorry about your Dad. :grouphug: Prayers too.

onesadduck

06-27-2007, 10:05 PM

I'm so sorry about your dad. I wish I had some positive news for you, unfortunately, my only experience with ALS was the father of my friend, who died only six months after diagnosis. I truly hope things go much better for your father. Sending good thoughts your way.

-Alisa

Mackey Mouse

06-28-2007, 05:55 AM

Hugs to you and prayers for your Dad... Sounds like you got some help here from our very generous giving posters and hopefully you can continue to get your questions answered by these posters...

catsrule

06-28-2007, 02:33 PM

My nephew now lives in a handcapped apartment. Your Dad will eventually need to make his house handicapped accessible. Also there are many support groups you can join. My nephew is also on prozac now. There are also daycare places and physical therapy that he will need.

pha1226

07-10-2007, 12:44 PM

:hug: No real advice here just hugs and prayers. My dad died 2 years after his ALS diagnosis. It started with a foot drop and trouble walking along with weakness in his hands and when he died, he was bedridden on a ventilator with a feeding tube. He was 55 when he died (and I was 7 months pregnant with my first daughter). I hope you find support here and through the suggestions other have made. I wish I had something positive to say to help you. It is a horrible disease and sadly, there is no getting better.

huckster

07-19-2007, 01:28 PM

hello,
sorry to hear about your father. My mom had ALS nasty thing it is.. she found out when she was 57 died at 59..God rest her soul. many go for a long time, my mom slipped fast she lost her abilty to walk and talk first, she could write for a while , then she had a glass stand with letters that we would watch her eyes spell things out.she had a feeding tube within the first year , any questions i would be glad to try and help it was 24 years ago, my heart goes out to you and family.

catsrule

07-20-2007, 01:28 AM

I'm sorry to hear that your Mom had this too, huskster. It is very hard watching my young and once vibrant nephew losing his ability to walk and talk.:guilty:

There is also walk to d'feet ALS. It is a walk for ALS every year. They have one in our area, they may have one in your area also.

Cruella 66

08-06-2007, 07:45 PM

Wow...can't believe I found this thread. My mom was just diagnosed with ALS in April. She's determined to be as independent for as long as possible but is having speech difficulty, swallowing difficulty and is getting weaker and more tired by the day per my sister. It's very difficult too as our grandfather also died of the disease in 1985 when he was 54. My mom is currently 57. I feel like I'm staring my future in the face as it's probably FALS and I, my siblings and children have a 50/50 chance of getting it. I'm going to hook up with the local ALS support group when I finish with our Disney trip. I'm also taking Prozac, trying to stay positive and accepting that my future is up to a higher power. My heart really goes out to the young man, 35, with the disease. Cindy

bethifoody

08-06-2007, 07:53 PM

Hi. I'm very sorry to hear of all your loved ones' diagnoses. My mom was diagnosed with ALS in April of this year - a very scary fact when you consider that her father died of it over 20 years ago. She's doing ok so far, I guess, although I can see changes every time I see her. She's still walking, driving & going to work. Her speech has been slurred for many months now, and she's beginning to have trouble walking. She is being seen at a local ALS clinic through the Univ. of Michigan, so I've no doubt that she's receiving the best care possible.

Someone mentioned the Walk to d'Feet ALS; I'm walking this year in a local Walk (Howell), and my sister will be walking in the Walk in her area. I feel like it's the least I can do.

Sending :grouphug: to everyone. I want to thank my sister, Cruella66, for sending me the link to this thread.

Thanks for posting, everyone. It's good to know we're not alone!

Beth in MI,
CR, 8/18-23

jacksonsmom

08-07-2007, 09:13 AM

Wow I am surprised to have found this thread. I never come on this board, didn't really know about it.

First I am very sorry to hear all of those that are dealing with ALS. It really is a nasty disease. I only pray one day someone finds a cure!

My dad currently is battling ALS. He started having some muscle weakness in his right hand in August 2005. By January of 2006 the doctors diagnosed him with ALS :(

My dad is only 50 yrs old. Currently he is doing "OK". He just recently took a trip of a lifetime to Alaska. He really had the time of his life there. I am so happy for him that he was able to go there.

My dad can still walk but recently he is expereincing weakness in his right leg. His right hand/arm is pretty much useless. His left one has lost a lot of muscle too. In fact my DH was just over at his house this weekend changing the door handles because my dad can not turn a doorknob anymore. He now has doorhandles that you push down and then push the door out (kind of hard to explain). Since the beginning he has lost a total of around 40 pounds. He is very thin. His speech is very affected, he slurs heavily. He recently went to the Courage Center here and he will be getting a machine that he can talk through and will allows others to hopefully understand him better.
He has a hard time swallowing and coughs/chokes when he eats.

It is a VERY frustrating disease for all those invovled. My dad can not bathe himself or even help himself when he uses the tiolet :(

I will say although the future is bleak my dad is living life as much as he can. He CAN still walk and although it is a struggle at times, he CAN still talk! We don't know how long he will be able to walk on his own but we are thankful for whatever we get.

One thing I want to say is ALS is a HORRIBLE disease. As family supporters and caregivers we HAVE to support the person with the disease wishes! My dad will NOT go on a breathing tube. Of course knowing that I know his life may not last as long then if he did have a breathing tube :( But those around him have to support HIS decision. We are not the ones living with the diease.
My dad's doctors have recommended a feeding tube but again my dad just is not ready for that. He may never be ready. Again us supporters have to support his decision, no matter how hard it may be.

It has been about 1 1/2 since the official diagnosis, 2 years since the first symptom. My dad has progressed quite a bit since then. I don't know what the next year or so will bring but one thing we learned about this disease is just one day at a time and love one another.

Again I am sorry to hear those that are battling this disease.

Cruella 66

08-07-2007, 06:45 PM

I am sorry to hear of everyone's encounter with ALS but I totally agree that it is the person suffering with disease that needs to call the shots and the loved ones that need to support his/her decisions; regardless of their own personal beliefs. I, unfortunately, am in Virginia and the rest of my family in Michigan. I don't see the day to day changes, falls, swelling, lack of eating, etc. Being a RN I can tell everyone the "right thing" to do according to my training but ultimately, it's up to my parents as to what they do. I can't get them to do it any more than if I were there, you know? So, honor them, put your faith in a higher power, and try to smile. Hugs to all, Cindy

catsrule

09-09-2007, 02:25 PM

Wow. I haven't been back to this thread in awhile. :grouphug:
This is a horrible, fatal disease and I wish it would get more attention from the media. The walk to d'feet was here today. I hope it did well. My nephew, Michael, continues to struggle each day from this disease. As I have said, no one in our families has ever had it that we are aware of so it was quite a shock for us.

Cruella 66

09-09-2007, 07:41 PM

We have our walk October 27th. When I was up at my parent's over the summer I contacted family members we haven't talked to in DECADES. My grandfather died of ALS in 1985 and I was curious to find out if anyone before or since him had had the disease. They were all surprised to hear my mom had it and my grandfather has been the only other person; they'd never even heard of the disease until he was diagnosed. And longevity runs on that side of the family...if you can avoid car accidents. It's so insane...to go for how long...who knows...then to all of a sudden have two first degree relatives, father and daughter, develope the disease. :sad2: Cindy

LuvOrlando

09-10-2007, 11:59 AM

Sorry Artoo, I'm wishing you:grouphug:

hentob

02-12-2008, 06:22 AM

And who knows--there is a lot of ALS research being done and a cure may come at any time!!

LITHIUM!!! Yes--the drug that is used in bipolar disorder is now slowing ALS:cheer2:

LuvOrlando

02-12-2008, 10:59 AM

LITHIUM!!! Yes--the drug that is used in bipolar disorder is now slowing ALS:cheer2:

Really, I have some friends whose parents are struggling with ALS and will be sure to spread the info. Thank you for posting

hentob

02-12-2008, 05:16 PM

Really, I have some friends whose parents are struggling with ALS and will be sure to spread the info. Thank you for posting

http://www.news-medical.net/?id=34906

:thumbsup2 :banana: :woohoo: :yay: :dance3: :cheer2:

Cruella 66

02-12-2008, 05:35 PM

Wow, that's incredible. I sent this onto my family! Thank you for sharing.:grouphug: Cindy

Fiver

02-12-2008, 09:15 PM

Howdy Folks,

I'm 34, married, and have a 6yr old son. I'm going to be trying Lithium in the next month. I'm staying positive, living life, and trusting God. :angel:
I've been having symptoms for a year. I was diagnosed in December. I walk with a cane(very sloooooooow), arm/hand weakness more on right side(can't write), and lots of spasticity. I feel as though I'm progressing not too quickly.

~Mel

SillyGirl30

02-13-2008, 12:25 AM

I just found this thread today, and I'm glad I did. Sometimes you feel all alone when someone you love has ALS. My Dad (53) has ALS. He was diagnosed a little over 2 years ago, but had showed signs of it about a year before that. He has the Famila kind. My grandfather and a great uncle also had it, but out my Dad's 27 cousins that could be affected he is the only one. My dad's ALS affected his foot first and now he wears a brace. He has also has a lost of use of his fingers on his right hand. He also loses his balance and falls a good bit. He keeps going with the a positive attitude and a frustration mixed in.

Cruella 66

02-13-2008, 06:36 AM

SillyGirl30; My grandfather also died of ALS in 1985 and he was about 53 at the time and now my Mom has it and she's 58. We have a small family on that side and my grandfather was the first for anyone to know of having it. They were VERY surprised to hear my mom has it now. She's pretty advanced. Just keep the faith and live your life fully. Wishes, Cindy

SillyGirl30

02-13-2008, 02:14 PM

Cruella 66 - I'm sorry to hear about your mother. Coping with ALS is hard. I actually went to counseling when my dad was first diagnosed. It turns out that I was grieving.

Cruella 66

02-13-2008, 03:46 PM

Yes, I understand totally. My sister and I both have seen our doctors and had to take some meds for awhile. I've come to terms and accepted it.

DisOrBust

02-13-2008, 05:04 PM

First I am no expert in ALS.

Please make sure your love ones are getting PT/OT/Speech. They will help with any assistive devices needed. Look at the yahoo groups. I am involved with them for Parkinsions and as an RN I can tell you these people are lightyears ahead of most MD's. That is not a rip on MDs but an observation. There is also an Nih.gov website for anyone interested in being a participant in a clinincal trial.

Goog luck and hugs to all!!

hentob

02-13-2008, 05:17 PM

Howdy Folks,

I'm 34, married, and have a 6yr old son. I'm going to be trying Lithium in the next month. I'm staying positive, living life, and trusting God. :angel:

:hug: I will be thinking of you.

Did you ever see this site?

http://www.focusonals.com/

Cruella 66

02-13-2008, 06:09 PM

No, I hadn't heard of that web site; I try to keep my head in the sand and not read too much. I know what's coming but I am living for the day and not looking too forward. I'll check that sight out. My parents have been in contact with ALS society of MI and MDA. The MDA is assisting financially with her voice box computer. As an aside, I too am an RN. Hugs and thanks to all, Cindy

chickie

02-15-2008, 12:52 PM

Hi everyone,
I, too, can't believe I just found this part of Dis. I'm here all the time, lurking, but this is the first time I have been to this section.
Anyway, my prayers go out to all of you. My father-in-law has been suffering with this terrible disease for a couple of years now. In fact, we are now realizing that many of the problems he has had over the past several years or so have probably been caused by the beginnings of this disease. He is 69 years old. He has had back, neck and leg pain and weakness for years, but he was just finally diagnosed with ALS a couple of years ago. He is now totally dependent on my mother-in-law to do everything. He can move from a chair to his hospital bed with help, but cannot walk at all anymore. He can't feed himself very well, but he still tries. He is having more and more trouble breathing and swallowing, and he now has to eat liquids (drinks a lot of milk) and smashed up foods. He sleeps with a breathing machine and is on oxygen all day. They say that people with ALS shouldn't be on oxygen all the time because they cannot expel the carbon dioxide, but he's to the point where his doctors told us to let him do whatever he wants. He does not want a breathing or feeding tube.
This disease is so hard on the patients, but it is also so hard for the caretakers. My DH's mom is losing weight and gets very little sleep.
Thank you for bringing this thread to life. It really helps to see that we are not alone in this disease, but it is also very scary to hear about more and more people getting ALS.
Good luck to everyone, and again, my prayers are with you all!:grouphug:

Jackie

SillyGirl30

02-16-2008, 02:03 PM

Chickie: I'm sorry to hear about your father in law.

Mackey Mouse

02-17-2008, 06:22 AM

I am so saddened reading this... you forget there are other horrific diseases out there when you are battling one of your own..

Hugs to you all.. I am so sorry. All I can say is seize the day and live the best you can...until you cannot anymore.

jacksonsmom

02-18-2008, 04:54 PM

haven't been back on this thread in a while. I am sorry to see new people dealing with a loved one that has ALS. Fiver --- I am so sorry to hear you are battling the disease yourself :(

We had a scare about a month ago with my father. His wife was feeding him, she cut up a banana and fed it to him. He started choking badly on it, so badly his wife told me later that she was scared he was going to die.
He had an appt later that afternoon and it was found that he is terribly aspirating when it eats.
The doctor told him that he recommends a feeding tube or my dad has a good chance of choking to death and probably soon. My dad decided to go ahead with the feeding tube.
It hasn't quite been a month since the feeding tube. It has been hard on him.

He now can not walk without assistance, even a short distance. He can put some weight on his left leg, but his right one is starting to drop more and more.

My dad's speech is getting more and more slurred. He does have a computer voice machine

He goes back to the ALS clinic next month.

I was wondering if anyone has any ideas where to look for a handicap accessible van? They are so expensive and my dad and his wife really can not afford one. I was wondering if anyone knows of an organization that helps with the cost? We are in Minnesota if that matters. THANKS!

Cruella 66

02-18-2008, 08:08 PM

jacksonsmom

02-18-2008, 08:42 PM

Try the MDA, they are helping my mom get her voice machine but she doesn't have it yet. Also, if there is an ALS Association in your area they may be able to help or give you ideas. My mom is getting weaker by the day, has had choking episodes but doesn't want a feeding tube. Most days she just doesn't eat. Best wishes, Cindy

Thanks! We will try those places.

My dad was just like your mom in he did not want a feeding tube. I think he got really scared when he starting choking and he didn't want to die that way. My dad's wife said she saw total fear in my dad's eyes when he was choking. He was very scared.

Before the feeding tube my dad was not eating very much either. Maybe little things here and there, which was causing him to lose weight fairly quickly and that isn't good either with an ALS.

This disease is just terrible on so many levels. :(

catsrule

02-27-2008, 02:27 PM

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.

safetymom

02-27-2008, 04:17 PM

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.

mjwolfe

03-03-2008, 05:10 PM

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

disneyfreak75

03-26-2008, 01:00 AM

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/

catsrule

03-26-2008, 01:40 AM

breezy1077

03-27-2008, 05:41 PM

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...?

Cruella 66

03-27-2008, 08:16 PM

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

SillyGirl30

04-24-2008, 11:12 AM

jacksonsmom

04-24-2008, 11:48 AM

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.

chickie

04-24-2008, 12:37 PM

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:

3happydancers

04-24-2008, 02:39 PM

: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:

Cruella 66

04-24-2008, 03:34 PM

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

DisOrBust

04-25-2008, 08:48 AM

chickie

04-29-2008, 11:59 AM

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:

Cruella 66

04-29-2008, 04:09 PM

:sad1: I am so sorry for your loss. Remember the happy times and that your FIL is in a better place, whole again. Cindy

chickie

04-30-2008, 09:23 AM

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.

breezy1077

05-01-2008, 07:09 PM

breezy1077

05-01-2008, 07:19 PM

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:

SillyGirl30

05-01-2008, 11:37 PM

Chickie- I'm so sorry to hear about your father-in-law.

catsrule

05-04-2008, 04:07 PM

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:

hentob

05-04-2008, 08:11 PM

Oh. I am so sorry:hug:

jacksonsmom

05-06-2008, 03:41 PM

I am so sorry to hear about your father in law, Chickie.

I really hate this disease

mjwolfe

05-15-2008, 08:53 PM

Breezy,

I think it is really important to find a neurologist your DH is comfortable with. My DH saw Dr. Kissel at OSU. He was a wonderfully compassionate doctor.

FWIW, i read the symptoms your DH has, and only a few things were similar to what my DH had with ALS. It also seems like your DH's progression of problems is much slower than the course ALS would take.

I hope you find the answers you are looking for.

-Marti

breezy1077

05-18-2008, 09:28 PM