Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

CBD Parkinsonism


  • Please log in to reply
4 replies to this topic

#1 livingwithtau

livingwithtau

    Advanced Member

  • Members
  • PipPipPip
  • 155 posts
  • LocationTennessee

Posted 09 October 2013 - 08:50 PM

I know it is more rare form but so hoping to connect with some others with this diagnosis. If you are or know of someone with this variation please post! Thanks.
Age 66
Dx in August 2013; symptoms since 2011 in left hand/arm. No tremor. Stiffness in hips and lack of arm swing.
Atypical Parkinsonism; probably CBD
Meds: Amantadine 100 mg 2x/day; Azilect 1 mg daily
Work full time as RN

#2 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,824 posts
  • LocationSeattle, WA

Posted 10 October 2013 - 10:56 AM

Dear living,

 

Try the following website: www.patientslikme.org


I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#3 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,824 posts
  • LocationSeattle, WA

Posted 10 October 2013 - 10:59 AM

www.patientslikeme.com.


I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#4 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 756 posts

Posted 10 October 2013 - 04:23 PM

Livingwithtau...I'm so sorry for your diagnosis.

 

You may also find this site helpful   http://www.psp.org/   (Foundation for PSP | CBD and Related Brain Diseases)

 

This is the link for the PSP/CBD forum  http://forum.curepsp...2c37ea8fd165f24

 

Please remember that CBD is a very rare disease, meaning that the  progression/prognosis in the individual patient is almost impossible to predict. Don't compare yourself to anybody else cause really there isn't much to compare! Statistics don't apply to individuals with so rare diseases...Try stay positive, never give up, and never lose hope.

 

You can also hang around whenever you want and share with us your fears and thoughts...

 

Keep in touch !


-English is not my first language !

-Aged 39. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).


#5 livingwithtau

livingwithtau

    Advanced Member

  • Members
  • PipPipPip
  • 155 posts
  • LocationTennessee

Posted 10 October 2013 - 09:55 PM

Thanks to both of the above responses!
Age 66
Dx in August 2013; symptoms since 2011 in left hand/arm. No tremor. Stiffness in hips and lack of arm swing.
Atypical Parkinsonism; probably CBD
Meds: Amantadine 100 mg 2x/day; Azilect 1 mg daily
Work full time as RN




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users