Is there anyone else got this disease? or knew or know anyone who had it?
thanks for reading
debbie
Since 2007 l have been treated for a rare parkinsons disease, Only to find out this month of June 2012, that l have C.B.D which is terminal, and have no medication to treat this disease, to top it, dont know how long iv got to live. Iv looked the disease up on the N.H.S. site not nice reading, the consultant in the hospital where l was having teasts done, said its very difficult to detect, as the problems ie, movements etc are the same as Parkinsons, Im still taking parkinsons medication, with a trail drug hoping it will slow down the degeneration of my brain. It is a rapid diease, a nasty way to go. My life now is day to day not knowing when it will take my brain away from me. Im 55 year of age bad enough to find out having parkinsons, but this, is scarey. When was the last time any new parkinsons or neurology drug has been out? we put so much in for test trails, etc,
Is there anyone else got this disease? or knew or know anyone who had it?
thanks for reading
debbie
Is there anyone else got this disease? or knew or know anyone who had it?
thanks for reading
debbie
Dear Debbie
that is indeed a very worrying diagnosis. I presume it wouldn't have been made without a lot of evidence? Have you had the 'alien hand' symptom? I hadn't really noticed this disease before - it is very rare. If I come across anything positive I'll let you know. Please keep on posting but you might also want to visit the psp site www.pspeur.org/ - I don't know how friendly they are but they may have some advise/help or have someone with the same disease.
don't give up hope
T
that is indeed a very worrying diagnosis. I presume it wouldn't have been made without a lot of evidence? Have you had the 'alien hand' symptom? I hadn't really noticed this disease before - it is very rare. If I come across anything positive I'll let you know. Please keep on posting but you might also want to visit the psp site www.pspeur.org/ - I don't know how friendly they are but they may have some advise/help or have someone with the same disease.
don't give up hope
T
I’m so sorry to read of your diagnosis, Debbie; you must be devastated. I’m afraid I don’t know of anyone with this disease as this is the first I have heard of it. Have you been offered any kind of therapy, such as physio or speech? Please keep talking and, as Turnip says: don’t give up hope.
This must be a devastating blow for you.I hope you have got emotional support as well as being given all the physical therapy that you need.
Barbara
Barbara
Hello Debbie,
I am so sorry I have not heard of this disease it must have been such a shock for you, please be assured I shall be thinking and praying for both you and your family. I hope you get some good support and perhaps if you ring the helpline they have some other support or contacts that may be helpful to you all.
Vivian
I am so sorry I have not heard of this disease it must have been such a shock for you, please be assured I shall be thinking and praying for both you and your family. I hope you get some good support and perhaps if you ring the helpline they have some other support or contacts that may be helpful to you all.
Vivian
thanks to everyone who replied to my post about C.B.D. and suggestions and sites to use.
lets hope for a miracle
debbie
lets hope for a miracle
debbie
Debbie,
Thank you for the information on CBD.
Can you tell the forum how the diagnosis for this is achieved?
What are the odd symptoms that vary from the "standard Parkinsons".
Meanwhile, take the positive view.
This may be an erroneous diagnosis.
Do not give in and crack on.
Best Wishes,
Arsene
Thank you for the information on CBD.
Can you tell the forum how the diagnosis for this is achieved?
What are the odd symptoms that vary from the "standard Parkinsons".
Meanwhile, take the positive view.
This may be an erroneous diagnosis.
Do not give in and crack on.
Best Wishes,
Arsene
Dear Debbie,
my thoughts are with you and your family and as others have said don't give up hope.
Take care
my thoughts are with you and your family and as others have said don't give up hope.
Take care
Hi Arsene
In lieu of Debbie answering let me have a go - CBD is an extremely rare condition. A person is about roughly 300 times more likely to get PD. It affects the cortex (hence the name) as well as the areas generally affected by PD (basal ganglia). The 'signature' symptom is 'alien limb' where the limb in question moves without any volition.
the details are here
http://en.wikipedia.org/wiki/Corticobasal_degeneration#Motor_and_Associated_Cortical_Dysfunctions.
It is probably a Tau protein disease so closer in cause to Alzheimers than to PD.
In lieu of Debbie answering let me have a go - CBD is an extremely rare condition. A person is about roughly 300 times more likely to get PD. It affects the cortex (hence the name) as well as the areas generally affected by PD (basal ganglia). The 'signature' symptom is 'alien limb' where the limb in question moves without any volition.
the details are here
http://en.wikipedia.org/wiki/Corticobasal_degeneration#Motor_and_Associated_Cortical_Dysfunctions.
It is probably a Tau protein disease so closer in cause to Alzheimers than to PD.
Does CBD show up in a MRI head scan or a DaTscan?