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Patty's girl

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Joined
May 12, 2006
Messages
5
Reason
Loved one DX
Country
US
State
MI
City
Highland
Thanks for all the replies from everyone concerning Botox. Grampal, as you suggested I immediately contacted mom's doctor and inquire of the benefits of this experimental treatment. He told me it would deaden the nerves of her arms and right hand to release the muscle contractions, spasm and stiffening (relieve pain). Also her hand so they can better clean it. Reports from her caregiver is that it hasn't helped much. Matter of fact, she has become much weaker. She is going to a research center called Nevada Neurological Consultants, Dr. David Ginsberg. This is her 3rd opinion. I guess this doctor is questioning the ALS diagnosis and is saying it may be PLS. Primary Lateral Sclerosis. I am so confused by this because 2 doctors diagnosed ALS - Bulbar form and have given her two years to live. She is now in her 20th month. I will be traveling there soon as she has asked me to come be with her. He breathing is becoming more difficulty and she is choking often. I was hoping for end-of-life care for her (Hospice) so she can die peacefully and with dignity, but the durable power of attorney is blocking that with this PLS deflection. PLS is a slow progressing disease and as stated before ALS is diagnosed through eliminating other diseases. In my mom's case she went from talking to not talking in nine months and walking to not walking in the past three months. I don't call that slow progressing! I have been so grief-stricken in the past few days after hearing of this new developing because of all the denial that is going in Nevada. My counselor said sometimes even after someone dies, family can continue to deny what caused their death. I say if you deny ALS, you deny dignity and care. Please pray for my journey. I am scared and alone. My brothers here will not go with me and I am trying to be there and stay brave for my wonderful mother. Thanks for all your wonderful support! Patty's Girl
 

Granny

Distinguished member
Joined
May 18, 2005
Messages
205
Dear Patty,
What frustration you must feel. You are such a good daughter, and it is so hard for you when not everyone is helping.
I will pray that you will have the strength and courage that you need to go to be with your mother.
I hope that the administrative stuff gets worked out, and your mom can go where she needs to be.
Those of us here have an idea of what you are going through, and know how hard it is. I also know what your mother is going through as I have had bulbar ALS for over two years.
Take one day at a time and try to stay positive. Never give up hope.
Hugz and prayers, Leah
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Patty's girl. As Leah said a bulbar ALS diagnosis is not good but there are people that are still living with it long after 2 years. Her quick slide is not encouraging and I too would question the diagnosis of PLS. Is this a private facility she is going to in Nevada. Sometimes the monetary thing gets in the way of reality. I hope things work out for you and if you need any support you know where to come. Al.
 
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