Im Sad! My Mom is slowly dying from a rare disease! (page 3)

ButtLight

The saddest part about it is she is my best friend, always was. When she was able, we would go out and eat dinner, and get drunk and laugh together! It doesnt happen anymore! It just makes me sick when I think about old times. But again, thank you all for your support!

Nathan Natas

BL, let's try to look at this rationally. Your Mom is suffering with a form of progressive dementia. As was already mentioned, she will soon become a danger to herself and others.

One way she'll become a danger is by continuing to smoke and accidently burning down the place she's living in, possibly killing herself and others (you and her pets?) in the process. You are wrong if you think you are doing her a favor by letting her continue to smoke.

You need to do what is best for your Mom, and best for yourself. That means you need to realize that although she still looks like your Mom, your Mom isn't in there. It is time to give her to professional care.

Your role in life is not to give up your own future for your Momma's past.

Nathan Natas

What is Corticobasal Degeneration?
Corticobasal degeneration is a progressive neurological disorder characterized by nerve cell loss and atrophy (shrinkage) of multiple areas of the brain including the cerebral cortex and the basal ganglia. Corticobasal degeneration progresses gradually. Initial symptoms, which typically begin at or around age 60, may first appear on one side of the body (unilateral), but eventually affect both sides as the disease progresses. Symptoms are similar to those found in Parkinson disease, such as poor coordination, akinesia (an absence of movements), rigidity (a resistance to imposed movement), disequilibrium (impaired balance); and limb dystonia (abnormal muscle postures). Other symptoms such as cognitive and visual-spatial impairments, apraxia (loss of the ability to make familiar, purposeful movements), hesitant and halting speech, myoclonus (muscular jerks), and dysphagia (difficulty swallowing) may also occur. An individual with corticobasal degeneration eventually becomes unable to walk.

Is there any treatment?
There is no treatment available to slow the course of corticobasal degeneration, and the symptoms of the disease are generally resistant to therapy. Drugs used to treat Parkinson disease-type symptoms do not produce any significant or sustained improvement. Clonazepam may help the myoclonus. Occupational, physical, and speech therapy can help in managing disability.

What is the prognosis?
Corticobasal degeneration usually progresses slowly over the course of 6 to 8 years. Death is generally caused by pneumonia or other complications of severe debility such as sepsis or pulmonary embolism.

What research is being done?
The NINDS supports and conducts research studies on degenerative disorders such as corticobasal degeneration. The goals of these studies are to increase scientific understanding of these disorders and to find ways to prevent, treat, and cure them.

Soledad

Wow this is such terrible news I am so sorry.

I think that the other posters are right BL it can be really dangerous for her if she isn't monitored every minute of the day. Maybe not a nursing home but a home health aide can help? Contact a social worker in your area and see what resources are available.

Don't forget to take of yourself also. I know from firsthand experience caretakers can become overwhelmed and stressed out. If there are respite services available and support groups in your area take advantage of the help they can offer. It's far too much for you to do alone.

Sassy

I'm so sorry BL.. I know she doesn't have Alzheimers but there are similarities in the deseases.. my step mother had alzheimers. For a while my dad got a live in nurse, so she could have someone there with her at least during the day when he worked. Eventually even that wasn't working and he had to put her in an Alzheimers unit. It is sad.. so sad..

To be honest, I dont' think you are doing her any favors by prepping her for the dr.. they really need to know how bad she is.. I know its hard.

prophecor

BL, Hi. I am so torn by your having to experience this. Please know that my thoughts and prayers are with you and especially your mother.

katiekitten

Im so sorry BL. it must be awful to see someone you love turn into someone you dont know.

Thinking of you hun.

Sunspot

The saddest part about it is she is my best friend, always was.

This can be very rough and my heart does go out to you. Having warm memories like this of your Mom must be fantastic! You will always have them to hold on to and share with others. I don't have any nice memories of mine.

I'd like to say that when I was in a nursing home for stroke recovery, that they are not as bad as a lot of people think! The days were filled with all sorts of activities to keep the clients very busy! They had animals brought in several times a week for them to pet and hold, there were arts and crafts to do, others came in to put on skits and plays and sing-alongs, a lady came in twice a week and gave free manicures and painting your nails, and one time they had a wine & cheese tasting evening! I couldn't make it down to the main floor where this was being held, and one of the nurses brought me up a small tray of cheeses and crackers AND wines! Just for lil ole ME!

It's not the dreary existance that I thought it would be----not by a long shot! Even for the smokers---the let the clients go outside on a large patio, wheelchairs and all, for those that wanted! Lots of times I would go down and join them just to see the sunset on the lake before bed! It was all rather nice, actually!

So don't be afraid of letting your Mom go to a nursing home! She will get the care she desperately needs and you can rest at night knowing that her safety isn't in jeopardy. I don't think in her mental condition that you will have to worry about her being upset with you for doing this. She might adapt quite nicely! Do some research on the ones near you and choose what one you think would best fit her needs.

I wish both of you all the best,

hugs,

Annie

kwintestal

Sorry, I don't have any advice to give you. I don't even know how to deal with my parents who have no ailments ... I'm sorry for your mom though, I hope you can find a way to give her the help she needs.

Kwin

Lady Lee

First my heart goes out to you.

I can't imagine what it would feel like to watch her slowly disappear day by day.

But I agree with some of the others. You aren't doing her or yourself any favors by not being fully honest with the doctors. We've had a few cases here in Canada where people wandered off and died due to exposure. I don't want to scare you but perhaps a little fear about the dangers regarding the smoking and her safety are important. It sounds like you love her a lot still. Then please do the right thing and get her all the help and safety she needs.

Im Sad! My Mom is slowly dying from a rare disease!

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