LouLou
Active member
- Joined
- Jul 11, 2011
- Messages
- 91
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2011
- Country
- US
- State
- Washington
- City
- Woodinville
Here’s where I am at 3 years with my PLS:
• 2009
o Started in left leg, then right (foot drag, falls)
• 2011 – June – Diagnosed
• 2012
o Started using a cane
o Hands next –weakness and fist clenching at night – wear braces for this
o Emotional lability (laughing and crying episodes)
o Several falls (to date there have been 15 – no broken bones, just bruises)
• 2013
o Visited NIH – in study of the history of primary lateral sclerosis
o Baclofen pump evaluation (oral Baclofen made me very sleepy)
o Surgery for Baclofen Pump & Catheter implant (happy with this!)
o More falls – not good when pump and catheter are implanted
o Began using walker – cane was not supportive enough
o Went on short-term disability
• 2014
o Speech problems began – slowed, hoarse speech
o Discontinued working
o Sudden progression of spasticity – including tongue, jaw & throat spasms
o Baclofen pump increase helped control new symptoms
o Beginning to have swallowing issues – swallow test scheduled
o Looking into voice banking
o To NIH for a follow-up visit (study)
I am living day to day and rely on my faith to get me through this and to manage the changes in my body. To me, the progression seems to be quicker than what I expected, but there is no “normal” progression. I count my blessings that this is not looking like ALS. I’m thankful for my great doctors and nurses and trust them with my care. Hoping and praying for a cure! Blessings to all of you.
LouLou
• 2009
o Started in left leg, then right (foot drag, falls)
• 2011 – June – Diagnosed
• 2012
o Started using a cane
o Hands next –weakness and fist clenching at night – wear braces for this
o Emotional lability (laughing and crying episodes)
o Several falls (to date there have been 15 – no broken bones, just bruises)
• 2013
o Visited NIH – in study of the history of primary lateral sclerosis
o Baclofen pump evaluation (oral Baclofen made me very sleepy)
o Surgery for Baclofen Pump & Catheter implant (happy with this!)
o More falls – not good when pump and catheter are implanted
o Began using walker – cane was not supportive enough
o Went on short-term disability
• 2014
o Speech problems began – slowed, hoarse speech
o Discontinued working
o Sudden progression of spasticity – including tongue, jaw & throat spasms
o Baclofen pump increase helped control new symptoms
o Beginning to have swallowing issues – swallow test scheduled
o Looking into voice banking
o To NIH for a follow-up visit (study)
I am living day to day and rely on my faith to get me through this and to manage the changes in my body. To me, the progression seems to be quicker than what I expected, but there is no “normal” progression. I count my blessings that this is not looking like ALS. I’m thankful for my great doctors and nurses and trust them with my care. Hoping and praying for a cure! Blessings to all of you.
LouLou