Mark's Girl
Member
- Joined
- Jul 8, 2011
- Messages
- 16
- Reason
- Lost a loved one
- Diagnosis
- 03/2011
- Country
- US
- State
- CA
- City
- Orange County
Hello Everyone,
I have been reading and learning for several months now....I feel like I know so many of you already....My husband Mark was diagnosed with ALS 3.22.11. His symptons started in June 2009 with little things like having trouble with buttons on his shirts....it is funny how we just start to work around the little problems without really thinking there is anything wrong...just make daily adjustments as needed.
In November 2009 he started saying that his core felt weaker than normal and was having some problems lifting and doing things overhead.
In January 2010 he fell while working....he said it was like his legs came unhinged while he was walking....we immediately got him into the GP...many blood tests, xrays etc...referral to Neuro....more tests, EMG, (A few more falls)
In March 2010 he had a muscle biopsy...which after being reviewed by the Pathologist and Neuro....turns out findings were inconclusive. But was told they thought it was Polymyositis.
In April...began seeing the Rheumatologist....Physical Therapy...more testing with Neuro...
In August 2010 transfered to UCI ALS Clinic for treatment, AFO's in December 2010, began IVIG Infusions...continued through March 2011. Later that month we received the diagnosis.
Life has been a whirlwind since then....the shock, sadness, anger and frustration was nearly overwhelming in the beginning....
We work hard to keep our since of humor...(we refer to the disese as "Lou") even during the most heartbreaking events...and we are now working hard to stay ahead of this disease by obtaining the equipment he needs now and things he will soon need to make him as safe and comfortable as possible.
Currently, Mark has trouble swallowing liquids...some problems with food if he does not take his time and focus on the task at hand....Voice is very week...words are a bit slurred...worse as he gets tired. Thumbs don't work at all now...legs very weak...uses walker everywhere...W/C being delivered this week. Neck very weak...uses soft brace for support when it hurts him....he uses Bipap at night when he sleeps. I have noticed changes in his eating habits....does not have the same appetite as before...he is losing weight....refuses PEG and VENT....and will only take small amounts of Ensure etc because of the phlem issues he experiences.
Next Neuro Appt is in Oct.
Sorry for the long post....I have been learning from all of you for several months now and thought I should make it official.....I can see that I am going to need lots of help in the future as this looks like it is going to be an awful bumpy ride!
God bless you all!
D
I have been reading and learning for several months now....I feel like I know so many of you already....My husband Mark was diagnosed with ALS 3.22.11. His symptons started in June 2009 with little things like having trouble with buttons on his shirts....it is funny how we just start to work around the little problems without really thinking there is anything wrong...just make daily adjustments as needed.
In November 2009 he started saying that his core felt weaker than normal and was having some problems lifting and doing things overhead.
In January 2010 he fell while working....he said it was like his legs came unhinged while he was walking....we immediately got him into the GP...many blood tests, xrays etc...referral to Neuro....more tests, EMG, (A few more falls)
In March 2010 he had a muscle biopsy...which after being reviewed by the Pathologist and Neuro....turns out findings were inconclusive. But was told they thought it was Polymyositis.
In April...began seeing the Rheumatologist....Physical Therapy...more testing with Neuro...
In August 2010 transfered to UCI ALS Clinic for treatment, AFO's in December 2010, began IVIG Infusions...continued through March 2011. Later that month we received the diagnosis.
Life has been a whirlwind since then....the shock, sadness, anger and frustration was nearly overwhelming in the beginning....
We work hard to keep our since of humor...(we refer to the disese as "Lou") even during the most heartbreaking events...and we are now working hard to stay ahead of this disease by obtaining the equipment he needs now and things he will soon need to make him as safe and comfortable as possible.
Currently, Mark has trouble swallowing liquids...some problems with food if he does not take his time and focus on the task at hand....Voice is very week...words are a bit slurred...worse as he gets tired. Thumbs don't work at all now...legs very weak...uses walker everywhere...W/C being delivered this week. Neck very weak...uses soft brace for support when it hurts him....he uses Bipap at night when he sleeps. I have noticed changes in his eating habits....does not have the same appetite as before...he is losing weight....refuses PEG and VENT....and will only take small amounts of Ensure etc because of the phlem issues he experiences.
Next Neuro Appt is in Oct.
Sorry for the long post....I have been learning from all of you for several months now and thought I should make it official.....I can see that I am going to need lots of help in the future as this looks like it is going to be an awful bumpy ride!
God bless you all!
D