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jacquelyn

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Even though I regularly read this website I have never contributed anything until now. I'm not sure why...maybe it was denial, maybe fear. Well, now, here it goes....
My father was diagnosed with ALS in January of this year (although we think he has had it much longer then that). Since that our family has been through an unbearable amount of suffering and distress. My Dad is the heart of my family and this disease has robbed us of so much. Dad, unlike many others, still has full use of his arms and legs (even though he has gotten much weaker) but is struggling to breath. The doctors tell us that the muscle around his lungs is the most significantly affected. He recently was hospitalized to fit for a bipap. So now he is home and uses the bipap regularly while sleeping and other times during the day when he feels he needs it. His doctor asked me last week to discuss other options with Dad that may help him once the bipap becomes less effective. I tried to have the talk with Dad the other night but it was so hard on him and he broke down and started to cry. He keeps saying "I don't want to suffer". But as I can see, he is already suffering.
I don't really have any questions or comments to help anyone else. I guess I just wanted to tell a part of my story. Each day I think that things can't get any harder, and then I wake up the next day.....
 

lunarruna

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jacquelyn,
I can see why you needed to post--you just had to initiate one of the most difficult discussions of your life! And there will be more to come. It is SO-OO scary and hard to start those kind of talks---you go over it in your head and words are so hard to choose, and then, although you showed your tremendous love for your Dad and did the right thing by starting the talk, it doesnt go as planned and it still feels terrible afterwards..........argh. We have all been there. I know when we needed to write up our living will and articulate my husband's wishes for 'the end' we just kept putting off the actual writing it down...almost everyday for several months I would say to myself, okay, today..." and then the day would be over and we still hadnt done it. So I am proud of you for initiating this discussion--it was act of love that your Dad needed so much....for now it just helped him to cry and release and maybe you didnt get to talk about all that you had planned. So, although it may not seem possible right now, with more of these discussions and time to process, he will eventually gain some clarity for the future of his illness. Hang in there.
Peace, Beth
 

ekoozmin

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Welcome Jacquelyn--

I am so sorry about your father, but you've come to the right spot as I believe there are quite a few of us who are in the same boat as you, trying to be as supportive as possible to a parent with ALS.

My father also has ALS, diagnosed in January of 2005. He is on a BiPap 24/7 now and has no use of his arms. Dad declined very quickly, and he wasn't able to think clearly about options avialbale to him at the time, even though we all tried to present them as objectively as possible. Depression really got the better of him, and now it sometimes sounds as if he regrets not getting the feeding tube when his doctor recommended it; we also think he brought in hospice too soon after diagnosis because that also limited his options. Now he wants to continue to live as long as possible, but he may have passed some critical turning points, such as a very low FVC, and there is no turning back.

My point here is to let your Dad work through his emotions, have his doctor put him on antidepressants if needed. If he feels emotionally better, he'll be better able to process the huge amount of medical information that's being thrown at him right now, and make informed decisions about his future. Tears are going to be flowing throughout this process--something else that was hard for me to handle as my father almost never cried in front of us. But there is something amazing about wiping my father's tears off his face because he is unable to do some himself that bonds the two of us a little closer.

Please let us know how he is doing--I hope your talks with him become a little less anxious after a while. You are a good daughter!

Liz
 

dana

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Hi Jacquelyn,
This isn't easy is it? My dad sounds similar to yours. He still has complete function of his arms and legs and is completely mobile. His ALS effected his breathing too. We never had him fitted for a BiPap, and we missed the opportunity to get one for him. Dad started having so much trouble breathing that we had to take him to the ER and instead of getting a BiPap, he had to get a ventilator. We had never discussed with him if he would want a vent in the end or not, and we had to make that decision for him. I know we made the right choice, but I wish so much that we would have been brave and smart enough to talk about ventilators before we got to the point where dad needed one.

I think you are doing the right thing by talking about this stuff now before you are forced to make a decision for your dad. It is so important that he voices to you want he wants throughout this process, and the only way to find that out is by talking about it. My family was to scared to do that and we regret it now. It sounds like your dad would probably need a ventilator if the BiPap starts to not be effective for him in the future...although I am not a doctor and that is something you should talk to your doc about. Do find out if this is something your dad would want or not. Many people decide that they would not want to go the vent route, but with our experience, it has been a blessing to be given more time with dad.

The vent has been hard on dad at times. His quality of life is not the same, but he still has quality of life. In fact, we took him to the horse races last weekend with the vent and all. It was great. My dad felt so much better after getting the vent because he could finally breathe again.

I wish you well. This all sucks, I know.
Dana
 

jacquelyn

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Thank you all for your comments and kind words everyone.

Dad and I have once again talking about what the next step is from here. I just wish that I knew the "right" words to say. I don't want to see him suffer but I certainly don't want to see him die either. I feel so selfish sometimes through all of this. All I can think about is how I will go on without him and how much my kids will be missing. My son is three years old and has always had a very strong bond with my Dad and it breaks my heart when I think of my son not remembering Dad.

Dad still gets emotional when we talk about where we are going from here. We have agreed to talk to our family doctor this week to see what his take is on the whole thing. I would give anything to make this "go away". It is so hard to see him suffer with this day after day.
 

dana

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I know what you mean when you say how you fear how this will effect your kids. My son is 2 years old and loves his Papa to death. My dad could not wait to have grandchildren, and a couple of months after my son was born is when dad first started getting the ALS symptoms. I feel like dad got screwed out of being the great grandpa that he always wanted to be. He still tries to be such a good Papa though. He gives my son high fives, plays with his hair, and gives him a big wave every time my son comes into the room. Dad can't talk to my son because of the vent which I am sure is so frustrating for him. Sometimes I think about how things would be different if dad did not have this disease. I can picture him taking my son fishing, golfing, and out for ice cream. Dad is not able to do that now, but my son loves him so much anyways. My little boy does not know any different, and he adores his Papa just the way he is. I wish things could be different, but since they cannot, I am so thankful that my son is able to spend so much time with my dad and that he is able to bring my dad such happiness.
Dana
 

jacquelyn

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Dana, your situation sounds so much like mine. I'd like to hear more of your story if you don't mind sharing it with me. Until I started visiting this website, I thought I was alone in the world with all of this.
 

dana

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Jacquelyn,
You are definitely not alone. It feels like that sometimes, but there are others out there who are going through the same thing. I just wish we all were not going through it.

My dad's symptoms started with his speech around May of 2004. He started slurring his words. I instantly knew that he must have a brain tumor and got him to go to the doctor. His regular doc said he thought it sounded like a minor stroke and not to worry. Some advice. Anyways, things continued to get worse and by the end of that summer, dad finally got to see a neuro. To make a long story short, the neuro could not find out what it was that was causing his slurred speech and sent him to the Mayo Clinic in AZ (in March of 2005). While there, the doctors told us they thought he had "early signs of ALS." We were completely devestated and hopeless.

In June of 2005, dad went to a different doctor in Colorado who thought that he had Lyme Disease. We went through the Lyme treatments until Feb. 2006 when dad went to the ER for respitory failure. While at the ER, he was given a feeding tube and a vent. That is basically where we are now. I still don't know what I think about the whole Lyme Disease diagnosis. Sometimes I think we should still be persuing it and other times I think it is a waste of time and money.

The thing that sucks the most out of all this is that dad has some cognitive thinking problems from the ALS. Our local neuros said that ALS patients remain clear headed, but I have found (with some of the research that I have done) that cognitive thinking can become deteriorated in some ALS patients. It has happened with my dad. His language and thinking gets confused, and it is heartbreaking to see such a smart man go through it.

My family is very fortunate because my dad is the owner of a business, along with his brother, and so not working has not been a problem. We have nurses that help take care of dad at nighttime so my mom can sleep. Now that dad is on a vent, he cannot be alone and needs lots of help with everything. He is still mobile, like I said before, and so this is really helpful with going to the bathroom and walking out into the living room from his bedroom. We just got a wheelchair for him last week and it is great because it has given him back a little bit of independence. We are looking into getting a wheelchair van next week so then we will be able to go out more often too.

This disease has changed my whole families lives and all the people who know my dad. I wish with all my heart that dad could be healthy again and do some of the things he once loved. I just want him to be happy and at peace with his life. I miss the way things used to be but I am thankful that he is still with us. Some days are so hard and then others are great. I feel like I am on an emotional roller coaster somtimes. If mom or dad has a bad day, I am a grouch or in tears. If mom and dad have a good day, I am as happy as can be. I really take on a lot of the emotions and carry the weight on my shoulders. I just want what is best for both of my parents.

I hope you and your family are able to cope with what is happening and that you continue to keep that communication open. It sounds like you are on the right track.
Dana
 

jacquelyn

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Dana my situation is very similar to yours. My father starting having problems approximately early last year. His first symptom was no energy and getting short of breath doing things that normally didn't bother him. In September, 2005 we brought him to the hospital and they admitted him for tests. He was released 13 days later no further ahead then we when we first started. All we found out from the hospital was that he had a very healthy heart and lungs for his age (he is 76 years old). In October, 2204 we bought him back to our family doctor who referred him to an internist. This internist gave him a thorough examination. After the examination he called me into his office alone and told me that he had a high suspicion that Dad has Lou Gehrigs disease. I didn't even know what it was. After he gave me a brief explanation, I asked him what the chances were. He said 50/50. I left the office devastated. Except for my sisters, I kept this information to myself for 3 months. Dad was once again hospitalized (at a different hospital) in December, 2005 for tests. THe same internist told me that he was now very sure that Dad in fact did have ALS. He said the odds were now 90/10. In January, 2006 we got him in to see a neurologist and that was the day that our lives completely fell apart. We told my Mom and the rest of the family and it was the hardest thing ever. When we told Dad I don't think he realized what was actually wrong with him and neither of us had the heart to tell him the details of this dreadful disease.

So now 5 months later he has trouble keeping his neck up, he has severe "jumping" (as he calls it) in his muscles of his arms, legs and stomach, he is on a bipap when he is sleeping and he has trouble sleeping at night all the time. My Dad was a very active man all his life and he too owned several business before he retired several years ago. As his symptoms are getting worse he is understanding more and more of what lies ahead. What was once a very stern, stubborn, independent, strong man has turned into a vunerable, helpless, depressed man. And all we can do is sit by and watch it happen. I do everything I can for him but it never seems like it is enough. I pray for a miracle all the time but I know it isn't going to happen.
 

BWk

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I also have complete use arms and legs,but have no breathing problems.Started having severe symptoms Aug.o5 age 57 started twitching in calves 100 times a min. 24/7!Is tough to deal with this illness!But now am trying to keep the faith and to be more positive[is hard,though]You have to take it hr.by hr.I don't seem to be losing much strength since Jan.thoug t I would be gone by xmas!WEnt on vit. regimen,amalgam removal,live cell therapy,detox:EBs'clay foot baths,charcoal tablets,organic foods[when available]no sodas,no gluten[when possible].Maybe some info that can help you?Ilost thirty pounds of weight.Have regained since Feb.maybe two or three pounds.Started above mentioned things in Dec.vit. regimen, etc.Phew! was that hard to type with two fingers,one part of the time.Take care!Welcome any comments on what Ihave described about myself and questions if any? BWK of N.M
 

dana

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My dad is only 52. He gets the twitching sometimes, but I don't think it is 24 hours a day. He has gotten the twitching in his stomach and legs. Dad also lost a ton of weight, but was able to regain a lot of it when he received the feeding tube. All he "eats" now is a liquid product called Jevity which is basically like Ensure. We put the Jevity in his feeding tube with wather. He does not eat anything orally because the fear of choking. Everything goes through the tube, but it is an easy process. Dad is able to hold his head up pretty well. I notice that it kind of hangs when he is sitting and not leaning up against anything. I keep praying that dad will just stabilize like this and not get any worse, but I don't think that is a possibility. Oh well, you can always pray though...right?
Dana
 

emjoi

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My Dad has MND/ALS. He was diagnosed June 2005.
It's been heartbreaking watching his slow decline physically, worst of all the fact that he can no longer speak. I would dearly love to hear him talk to me again.

But we email, and he has other means... a sometimes a pen and whiteboard, and sometimes a Lightwriter typing talking gadget.

Underneath the physical stuff it's still the same guy.
The old Springstein "Philadelphia" line about shedding his skin.... if he could escape this skin and get into some other, he's still be the same guy.

He decided to just accept it. "It is just what it is", was his common line.
No point lashing out at other people, or wallowing in depression. It's just random crap that no-one is to blame for and nothing can be done to prevent.
He goes thru all the pains, and doctors proddings, and now even the indignity of being fed via a tube in his stomach.

For all this crap, I don't want him to go, and nor does he. He is still a central, active, part of our family.

I'm not sure what the point of all this is.... just my own experience of being a Son of a Father.
 

TBear

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Its okay emjoi! This place is designed for this kind of stuff. Vent away... everybody does it and we all accept it. I was the husband of a wife and know how you feel.

T.
 

ekoozmin

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Welocme to the board emjoi, although we're all sorry to have to be here. There are lots of us who have a parent with ALS, and each person brings a new and different story on how they and their family copes. I hope you find lots of good advice here.

Liz
 

anne

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Hi....My mom has also lost most of her speech. She is 75 and has had symptoms for the past 1 1/2 years but we really started to notice a difference in her speech Jan'06. June' 06 we had her checked out by a neurologist at an ALS clinic. He could not give us a definate diagnosis of Bulbar ALS because none of her limbs are affected. The symptoms are very much localized and the emg and nerve conduction tests were all normal. She has some problems with swollowing, choking, coughing and saliva build up. She is now on Rilutek and Elavil. The saliva build up is reduced and the crying/laughter is also reduced since starting the Elavil. My concern is that she is not able to speek to me on the telephone. I have been very close to my mom and spoke to her 4 to 5 times per day. Now , that has been taken away from us. How to the talking devices work and are they available through the ALS society or do I have to purchase it.
 
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