She goes to PT twice a week and is currently on a dopamine supplement. What signs should I look for in her daily activity … this is all very new to me.
One important first step, if she takes levodopa it should always be on time all the time. Of course everybody forgets, but if she has bad memory she needs help. You should consider how you want to be involved because it could potentially be 20 years of progressive and horrible disease.
Nobody knows what to expect with Parkinson’s disease. Most experts say progression is different for each person. On average each stage is about 2.5 years except for stage 2 which is 5 years, stage 1 could be years as well as generally people are diagnosed long after they developed PD. My husband was diagnosed in 2015, but he already had symptoms as early as 2011. For the first 5 years he was in very good shape and we ignored this disease. He took levodopa, exercised a lot. He is or was very healthy and in excellent physical shape. We were not in denial but concentrated on living well, travel etc. lived very normal life. I would not change that as it would not make a difference. My husband’s PD progressed about 4 years ago and now he is in advanced stage however he does not have dementia whatsoever. His motor skills are diminishing at alarming speed now and levodopa is not working effectively. Further testing will establish what other conditions are causing sudden deterioration. There is 5 stages of PD and not many people live to reach final stage as they succumb to other diseases or die of falls or aspiration pneumonia. It is horrible, cruel disease, no cure, but it is not deadly, generally people live normal life span and disease can last 20 years or more, average is 16 years. At late stage, which is defined as stages 4 and 5, about 40% develop dementia as well. At initial exam neurologist would establish if there was Lewy Body which is similar to PD except cognitive changes happen before motor skills are impaired.
Bad memory doesn't come with Parkinson's, but Lewy Body dementia which is often associated with Parkinson's does. And bad balance is also associated with Lewy Body. I would have her reevaluated, so you and your family know exactly what you're dealing with, as she may have both Parkinson's and Lewy Body dementia. She probably shouldn't be living alone if she is now a fall risk and has a bad memory, so you may need to start looking into assisted living facility options for her, with a memory care attached for down the road. And of course there is a lot of information on the internet about Parkinson's and Lewy Body dementia, so you can gain a lot knowledge from that. Wishing you and you mother well.
You are where we all are when we first get started. Feeling helpless. In a kind of shock.
Parkinson's Disease has an absolute WEALTH of information online, as well as many organizations that are absolutely bursting with information. So it is a matter now of accessing that information. I remember when my brother first became ill with Lewy's Dementia. I honestly had NO information about it, and that despite being a Nurse. I also had no idea how to be a POA and Trustee of Trust which is what I became in one afternoon! Take heart. It is a bumpy first year gathering information, but information is what will help you. Know that soon you and your mom need to see an elder law attorney, get an immediate POA, get will updated, get assets evaluated, get advance directives done.
There are, if you are at all on Facebook, many pages that have groups to join as a caregiver of someone with Parkinson's.
If you have supportive family, friends, faith based community, get them together to inform and to ask for help when you need it.
For now, be easy on yourself. Start learning online with youtube and googling and facebook and other support groups. I do remember that one parkinson's . org page has a good forum; can't remember where it was.
And this! Do understand that your mom isn't suddenly "a diagnosis" and you are still her "daughter" tho that becomes complicated with being also a caregiver as well; the emotional toll can be overwhelming at times, so look on it as a weather system that will come and go. Your Mom is facing a lot of loss of control issues that won't always make her pleasant to witness.
Learn to bend, as "the bow too tightly strung is easily snapped". Learn to know that mom isn't a disease, but a person, and her problems will be unique to her as her own thumbprint. Don't be too tough on yourself. Know that the anxiety will be awful for a while for both of you. Take deep breathes. Expect the unexpected.
Come here with each individual problem and we will try to help. Know that you are not alone. I am so sorry you are both facing this. Be honest with one another. Don't try to take on more than you are able.
You should consider how you want to be involved because it could potentially be 20 years of progressive and horrible disease.
Most experts say progression is different for each person.
On average each stage is about 2.5 years except for stage 2 which is 5 years, stage 1 could be years as well as generally people are diagnosed long after they developed PD.
My husband was diagnosed in 2015, but he already had symptoms as early as 2011.
For the first 5 years he was in very good shape and we ignored this disease. He took levodopa, exercised a lot. He is or was very healthy and in excellent physical shape.
We were not in denial but concentrated on living well, travel etc. lived very normal life.
I would not change that as it would not make a difference.
My husband’s PD progressed about 4 years ago and now he is in advanced stage however he does not have dementia whatsoever.
His motor skills are diminishing at alarming speed now and levodopa is not working effectively.
Further testing will establish what other conditions are causing sudden deterioration.
There is 5 stages of PD and not many people live to reach final stage as they succumb to other diseases or die of falls or aspiration pneumonia.
It is horrible, cruel disease, no cure, but it is not deadly, generally people live normal life span and disease can last 20 years or more, average is 16 years.
At late stage, which is defined as stages 4 and 5, about 40% develop dementia as well.
At initial exam neurologist would establish if there was Lewy Body which is similar to PD except cognitive changes happen before motor skills are impaired.
I would have her reevaluated, so you and your family know exactly what you're dealing with, as she may have both Parkinson's and Lewy Body dementia.
She probably shouldn't be living alone if she is now a fall risk and has a bad memory, so you may need to start looking into assisted living facility options for her, with a memory care attached for down the road.
And of course there is a lot of information on the internet about Parkinson's and Lewy Body dementia, so you can gain a lot knowledge from that.
Wishing you and you mother well.
Parkinson's Disease has an absolute WEALTH of information online, as well as many organizations that are absolutely bursting with information.
So it is a matter now of accessing that information.
I remember when my brother first became ill with Lewy's Dementia. I honestly had NO information about it, and that despite being a Nurse.
I also had no idea how to be a POA and Trustee of Trust which is what I became in one afternoon! Take heart. It is a bumpy first year gathering information, but information is what will help you.
Know that soon you and your mom need to see an elder law attorney, get an immediate POA, get will updated, get assets evaluated, get advance directives done.
There are, if you are at all on Facebook, many pages that have groups to join as a caregiver of someone with Parkinson's.
If you have supportive family, friends, faith based community, get them together to inform and to ask for help when you need it.
For now, be easy on yourself. Start learning online with youtube and googling and facebook and other support groups. I do remember that one parkinson's . org page has a good forum; can't remember where it was.
And this! Do understand that your mom isn't suddenly "a diagnosis" and you are still her "daughter" tho that becomes complicated with being also a caregiver as well; the emotional toll can be overwhelming at times, so look on it as a weather system that will come and go. Your Mom is facing a lot of loss of control issues that won't always make her pleasant to witness.
Learn to bend, as "the bow too tightly strung is easily snapped".
Learn to know that mom isn't a disease, but a person, and her problems will be unique to her as her own thumbprint.
Don't be too tough on yourself.
Know that the anxiety will be awful for a while for both of you. Take deep breathes.
Expect the unexpected.
Come here with each individual problem and we will try to help.
Know that you are not alone.
I am so sorry you are both facing this. Be honest with one another. Don't try to take on more than you are able.