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  • Dad w/ALS extremely quick progression

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    Old 03-16-2005, 09:00 PM   #1
    jcwitte
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    Dad w/ALS extremely quick progression

    My Dad fell three weeks ago and ruptured his spleen. He was diagnosed in Nov 04 and three weeks ago, he was walking around without the aid of a cane, eating pizza, burgers, etc, talking with okay with an occasional slur, able to hold his grandkids, etc. He had an emergency splenectomy and now suddenly he is going downhill extremely fast.

    About a week afer the surgery he appeared to be gaining his strength back, but now suddenly he is just going downhill. He had to have a feeding tube put in, he is unable to do ANYTHING for himself. We have to lift him, adjust his legs, swab his mouth, comb his hair, scratch his nose, EVERYTHING. It's hard to believe that three weeks ago he was standing in the kitchen cooking himself some ramen noodles. And talking. Even just over the last three or so days I have noticed that his speech has slipped drastically. Last week he was using sentences, today his speech is best described as nothing more than a series of grunts.

    How long does he have? Will he gain his strength back or did the emergency splenectomy just fast forward him to the last few weeks/months of his life. He is coming home from the hospital tomorrow. I am pretty worried.

     
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    Old 03-17-2005, 07:53 AM   #2
    mari17
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    Re: Dad w/ALS extremely quick progression

    This does seem strange,did they get him up right after his operation or has he become weak from not moving around? I can not imagine why his speach has changed so quickly nor why he needed the feeding tube when only three weeks ago he was able to eat. I'm not much help am I ....in my six years of ALS care giving and three years after of reading ALS boards every day I have never seen this happen.Hopefully he will regain some strength and if they put a tube down his throat for the operation that might be why his speach and eating are impaired,if that is the case then those features might improve.Just guessing,mari

     
    Old 03-17-2005, 08:43 AM   #3
    Tiffyholman
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    Re: Dad w/ALS extremely quick progression

    my mom went in the hospital with respiratory failure and a trech put in 2 days before thanksgiving....... she was dx in april 04, she came home dec. 23 and just passed feb 22........... Hers went extremely fast and I blame the hospital people alot cuz they didnt get her up to walk and stand and use her muscles with ALS, you don't use it, you lose it, is what they say......... show your dad as much love as you can and, realize how hard this is for him to have other people take care of him, I know it was hard for my mom she was so independent........my dad and i took care of her 24/7 dec. 23 to when she passed. My prayers are with you........ How old is your dad? my mom was 55 and I am 26............ PLease let me know if you need anything just to talk I know how hard and frustrating this can be.....

     
    Old 03-17-2005, 04:05 PM   #4
    tip2mol
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    Re: Dad w/ALS extremely quick progression

    Hi,

    I lost my Mom 5 years ago to ALS- and yes she progressed that quickly. This disease is so undpredictable. My Mom was working 2 months before she passed away. Her swallowing effort greatly diminished over a 2 week period and she had to go in to the hospital to have a feeding tube placed. She was scheduled to go home the next day- but became weaker. It was not of any fault of the hospital staff. Just two hours after the procedure- she was already up and walking to the bathroom. Any type of occurence- whether it be a fall or surgery can speed up the process of ALS- as it puts additional stress on the body. I have stayed involved in our local support group and can say that there is more than one situation like my Moms. As - I said, this disease progresses differently in different people. It is scary and frustrating. The most important thing to do now is just be there for your Dad and love him. This will mean more to you and him than anything.- And don't treat him any different. Talk to him like you have always talked to him and make sure you don't treat him like a child. This is something that is mentioned many times by the people with ALS- that really bothers them. The disease may change the way their body reacts- but their mind is every bit as sharp as it was before the disease.

    My prayers are with you and your family

     
    Old 03-18-2005, 05:19 AM   #5
    jcwitte
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    Re: Dad w/ALS extremely quick progression

    Thank you all for your replies. We don't blame the hospital at all. My Dad was very grateful to all nurses and doctors for everything. Despite this disease, we are all very lucky in that My Dad and Mom had eight kids. I am the fifth of seven brothers and a sister who is the youngest. My dad will definitely be taken good care of and he will always be shown the respect that a head of household deserves. It is just so dern frustrating though. He got up to go to the bathroom and fell just perfectly to rupture his spleen. There is really nothing we could do to avoid what has happened from there. His spleen had to come out and a splenectomy is a major surgery even for an otherwise healthy person, let alone my Dad who is a 71 year old ALS patient. I just wish I knew how long he had. Regardless, we will be there with him through it all. I better go, it's bath time.

     
    Old 03-18-2005, 05:24 AM   #6
    mari17
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    Re: Dad w/ALS extremely quick progression

    Just wanted to add that unless your Dads breathing is not good or if he gets pneumonia then I think he will live quite a while longer. PALS often die from pneumonia that is not properly treated ,'pseudomonis'is often the breed of pneumonia found in PALS.When breathing is compromised PALS start using a bi pap to help them breath better. The lungs of PALS usually being heathy, it is the muscles that move the lungs that fail in PALS.Let us know how he is doing.mari

     
    Old 04-23-2005, 07:53 PM   #7
    Jus_Peachi
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    Re: Dad w/ALS extremely quick progression

    Hi,
    I too lost my father 4 yrs ago to ALS. At 71 yrs old, it took more than a year for a diagnosis after experiencing pain and numbness in his left hand and arm over a period of several months. The ALS Dept at Emory in Atlanta finally confirmed the diagnosis. After the shock subsided, we set about educating ourselves to the best of our ability in order to insure the best possible care for him. His conditioned worsened very quickly. My Mom promised to take care of him at home until we were unable to provide the level of care that was required. My Mom, brother and I spent thirteen months rotating 24/7 care. In the final months, we had a great deal of support from the local chapter of Hospice. We were all with him when he passed away.

    I totally agree with Tip2Mol. She communicates with a great deal of wisdom and understanding. The disease is very cruel - it drains every thread of energy from everyone in the family. Continuing to love and support eachother, treating your father with dignity and respect while giving him the care he needs will bring comfort to you long into the future.
    While you give your best to your father, don't forget to take care of yourself and encourage your siblings to do the same. You must be healthy to love and care for your father. Draw on eachothers strength and look to your higher power for guidance and comfort.

    Know that there are many of us out here who understand your pain and the endless questions that haunt you everyday. Making everyday count and spending this valuable time together is most important.

    We will keep you in our thoughts and prayers.

     
    Old 05-15-2005, 04:42 PM   #8
    pferg101
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    Re: Dad w/ALS extremely quick progression

    My Mom was diagnoised with ALS last year. She was 78. This is a late age to be diagnoised with ALS. People are usually much younger when diagnoised.We think looking back that she had signs we just didn't know? She did progress quickly from being able to move around to a walker, then walker with a seat. I think at their age it does move quickly. I would advice you to find a local ALS association. Meet with them, go to support groups and borrow videos about ALS & the progression! They can also loan you equipment as needed!

    I am sorry for your family. It is a devestating disease. Enjoy every minute you can with him. We were 5 daughters, two that lived out of town. I spent as much time with my Mom as I could. In the end i took care of her very intimate needs & was blessed & humbled doing that for her!

    She did have a sudden turn for the worse on April 27th and we were called to her side. To our suprise she died on April 29th. We knew she was close but, we thought we had a few more days. I am still in shock and miss her terribly but, thought I would take the time to write you!

    You sound like you have a wonderful & supportive family. You dad is very luck & I feel blessed! I hope my reply didn't bum you all out. It was not my intention.

    Hugs, Pam

     
    Old 06-02-2005, 10:21 AM   #9
    pferg101
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    Re: Dad w/ALS extremely quick progression

    Hi,

    Just wondering how you dad is doing? I hope you family is doing well too!

    Pam

     
    Old 07-14-2005, 02:00 PM   #10
    jcwitte
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    Re: Dad w/ALS extremely quick progression

    Just wanted to follow up. I noticed that someone asked how he was doing. Well, my Dad passed away on April 25 2005. Just about five months after diagnosis and about two months after falling and rupturing his spleen. He didn't regain anything after the surgery. He just slowly got worse. ALS has got to be the worst disease on Earth. I think his falling may have been an answer to his prayers. Instead of suffering for a year and more, he only had to really suffer for a couple of months.

     
    Old 07-14-2005, 08:33 PM   #11
    pferg101
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    Re: Dad w/ALS extremely quick progression

    I am so sorry that he passed away! You are right he was spared a lot of suffering! My Mom died April 29th of ALS & although I miss her terribly & would trade anything to have another day with her, I am glad she was spared the worse part of her disease! My thoughts & prayers are with you! Again, my condolences!

    Pam

     
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