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Old 08-14-2011, 05:28 AM   #1
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Progression of Disease

Hello Everyone,

I hope everyone is doing well? How are you Meg?

Can a person be speaking and walking and then all of a sudden they are either not able to speak or walk? What is the progression and how quickly or slowly can this happen? Does it happen over a long period of time or is it sudden?

bearcubs

 
Old 08-14-2011, 08:32 AM   #2
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Re: Progression of Disease

That is a question with many answers and no answer. It truly depends on our loved one and their individualized progression of the disease.

Yes it is possible for them to lose the ability to speak or walk quickly. One has little to do with the other because they are not controlled by the same part of the brain. Mom has lost her ability to communicate but she is still walking two years later.

My Mom lost the ability to speak coherently with consistency very quickly. Yet some like my Dad never lose the ability speak at all. Other lose it gradually over time as my grandmother did. It usually begins with the inability to find appropriate words, especially nouns. Pronouns and other such words replace the nous. So "Bob went to the bakery" turns into "he goes a that" which makes little sense. As they lose more words and the abilities decline you will only get "he goes". Over time it will become totally incomprehensible. If there is an illness, a medical situation, a move, undue stress, stroke, or other extenuating circumstance it can happen very quickly but normally it is a loss over time.

Walking is the same way. They lose the ability to walk, the strength to walk, and the will to walk at different rates. Between walking and chair bound there is usually a fall risk stage. Mom walks constantly even in the later stages. She is becoming unsteady on her feet and has lost her sense of center which makes her lean but she is still walking. I have seen some that lost their ability walk early in the disease. Some lose it slowly and some quickly. Again an illness, medical situation, move, undue stress, stroke or other extenuating circumstance can make it happen quickly.

So the answer is that they can lose either at any rate of speed their disease dictates. It all depend on which area of the brain is affected at which time and to what degree.... and what extenuating circumstances exist.

Love, deb

 
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Old 08-14-2011, 09:02 AM   #3
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Re: Progression of Disease

Deb:

Your answer was terrific. You gave a really clear description of the process.

A week ago we noticed DH was leaning like your mother. He was leaning so far that he fell against the wall a few times. He was hanging onto the rail along the halls, since he wouldn't (or couldn't) sit down. He also stopped feeding himself at all, even using his fingers. His eyes were completely vacant when he looked at us. The aides talked to us about ordering him a geri-chair, to try to keep him from trying to walk because he was such a big fall risk.

This week he's back on his feet, walking much better. He's been getting in and out of chairs by himself. He's much more alert. He has even said some words that seem to be in the right context, like saying bye and waving when our visit was over. This is the first time that we've ever seen something that looks like an improvement. There have been no changes in medications or routines.

Have you seen any of these temporary improvements with your parents? It was a real surprise to us.

 
Old 08-14-2011, 09:58 AM   #4
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Re: Progression of Disease

Beginning, the answer is yes. It is not unusual to see that up and down. Mom is the roller coaster queen!!! Mom leaned to the right for a while. As with your DH she actually bumped the wall and used the railing to stay vertical.... and had a couple of falls. Then it just seemed to go away. Later, she leaned to the left with a few more falls. We laughed that she was making up for leaning to the right. Then she seemed to be vertical for a while before the leaning backwards started then end of last week. It absolutely comes and goes with Mom but that is definitely her pattern... inconsistency. For a few days she would teeter on falling and then straighten up and be on the go again. I have also noticed that when she is in her "leaning mode" that other cognitions are not as sharp either. She will be eating with her fingers rather than utensils. She will be less connected and have a more vacant look while responding less to what is going on around her. What I have noticed with Mom is that it comes and goes but each time it seems to be a little worse and stays a little longer. It also seems to be a function of how tired she is. It is worse in the afternoon than the morning and on days she doesn't sleep well at night. Those days seems to give me an indication of what is to come in the future.

I also saw the same sort of thing with Dad but it was more rare. Even that last week, after he had been in bed for most of a week not eating, he woke up and wanted eggs! He got them and ate them all. He also had a period of lucidity about a week before that while my daughter was there for a couple of days. It's amazes me the ups and downs I have seen over the years of dealing with this disease. The only consistency is the inconsistency and there are continually surprises around the corner

Love, deb

 
Old 08-14-2011, 10:04 AM   #5
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Re: Progression of Disease

Hi bear,

My FIL who has stage 7 of AD has just started walking problem in May. It was like boom, he fell in his room trying to get out of bed on the second day after the outing for the concert the previous day! Boom, he fell, and then he could not walk properly with his cane anymore. Within 2 weeks, we gave him his old walker and he took about 2 or 3 months to learn to use it. He uses the walker better now but he still needs to be told to turn and he cannot lift his walker anymore. He also now just began to lean forward for a short time in the sofa. It is just like that, boom!
He had walked with a cane for 3 years. He first stopped walking on his own in late 2007 after the overdose of caumadin. That overdose really made him decline more. He stopped jogging in 2006.

It is a slow process. We were told in 6 months, he will need a wheelchair. The home is trying to make him walk. As for the walker, Deb said it is dangerous, but for my FIL who has more intelligence, he began to ask for help and he does not try to get up and play with the walker. He also gets up or sits down very slowly.

So far he talks OK although he is not a talker. He stopped talking a lot in the spring this year, but he can still respond. He really can still talk OK. Maybe not next year.

It is slow but yes, it somehow shows up boom like that, but there are other signs before it. You will never know at what point he will stop eating, walking or talking.
He has been choking a lot for 3 years and this past March he has been put on pureed food.

Hope this helps,
Nina

Last edited by ninamarc; 08-14-2011 at 10:16 AM.

 
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Old 08-14-2011, 11:08 AM   #6
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Re: Progression of Disease

Up to now we've had a slow and steady decline, with periodic drop-offs. It took us about 8 years to get to needing a nursing home, from the point where DH was having trouble with finding the correct words for things. This is the first time in all those years that he's actually shown an "uptick" instead of just continuing the slow downward spiral. It really took us by surprise. Usually the things that take us by surprise have been that he has lost another ability...or when he had a seizure, which I learned is not uncommon in AD patients.

I still can't believe that we've lived with this for nearly a decade. The aides tell me that he might live another ten years since his other health is so good. I think they are trying to be encouraging....

 
Old 08-14-2011, 12:53 PM   #7
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Re: Progression of Disease

Just validates that each experience is different Beginning Dad was the way your DH was but his downward turns were cardiovascular related. Mom on the other hand has been the proverbial roller coaster. She was diagnosed in 2006 but I know that was later in the disease. It was easy for her to cover because we knew Dad couldn't remember Who would have thought that Mom was actually as bad or worse than he was. Life just couldn't be that unfair!!!

She had a slow decline before 2006. At that point she started with the UTIs and hysteria. She fought this disease with all she was worth. Then came the second move, more UTIs, the trip through the geriatric psych unit, and her falling off the cliff. That was a dramatic decline but she came back in some abilities, as the ability to ambulate independently. Her next downward decline was also related to kidney/urinary tract or possibly TIAs. But she seemed to regain a better footing eventually. I truly believe it is other health problems, stress, and sleep deprivation that has given us the roller coaster that you have not seen.

It amazes me that I have been on this journey for 13 years since Dad's diagnosis. Mom is actually relatively healthy except for the dementia. She does tend to walk herself to exhaustion and hydration has been an issue. We are fighting the weight loss. She dropped significant weight but then maintain and even gained a little but last month she dropped 5 pounds. That is a constant battle with her. It is always something!... and as you say the surprises are rarely good ones.

I got the same words from staff... she might last another 5 years. My response was !!! Sometimes encouragement is in the eye of the giver

Love, deb

 
Old 08-14-2011, 02:51 PM   #8
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Re: Progression of Disease

Sometimes encouragement is in the eye of the giver

Very true!!!!!

Last edited by Beginning; 08-14-2011 at 02:54 PM.

 
Old 08-14-2011, 06:56 PM   #9
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Re: Progression of Disease

Thank you everyone for your help. This has clarified things for me. Lucky for us that we have this site to come and ask questions and get support. I hope you all have a good day tomorrow. Blessings and Prayers to all of you.

 
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