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Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
My PLS moving into ALS is being put on hold till December.

We had a bathroom that I only use that the pee trap was installed on the wrong side of the tub during a remodel and I was breathing directly in from the septic tank through my over flow vent in to the tub. It was Hydrogen Sulphide. It shuts down the lungs and cognitive thinking making thoughts like a fog. It is literally a killer.

My brother in law found the problem and it's now been fixed.

I am feeling better in my head and my breathing problems are gone. The neurologist said it was literally shutting down my central nervous system and breathing. Everything else is still the same.

With PLS the cramps and spasms will make it so I can hardly move. At times, when I'm over tired my muscles stiffen up and it looks like I'm having a 20 minute seizure from my neck to my toes. You can watch the body spasming under the skin. We're working with my PT to see how I can work through them when they happen. Getting cold is like pouring wet cement over my body while it spasms and stiffens up until my muscles can't cramp and spasm any longer and it stops...although my body stays in the contraction until it goes limp and I can't move for a while.

I do not have muscle wasting although with having had the PLS for so long, I am no longer able to walk for any length of time, I have foot drop, wrist drop, weakness and the cramps/spasms are out of control without medication and muscles are atrophying in areas that I can hardly use any more. I have every symptom of progressing PLS. The EMG showed lower motor neuron involvement and now I have no signs. Miracle? I'm grateful.

I am also humbled because my lungs were being shut down so quickly, that I was gasping for breath after my soaks at night for the spasms. I have chosen to not go on a ventilator since I am the caregiver in our family and we don't have any disability insurance to take care of me. For now, I don't have to even think of that.

I am in an ALS support group in the city even though I have PLS since the outcome will be the same only I may live longer. My heart is to work to be an advocate for people with ALS and PLS. I still only have a small energy bank but what I've got after work, home and family I want to pour back into the ALS/PLS community. I have already come in contact with a woman in our area. Maybe God allowed me to be gasping at night for breath and unable to go anywhere to give me a glimpse of what ALS does to people. I can still move. You are in my thoughts and prayers every day those of you on the forum.

My mom died a week ago last Sunday. What a gift to have had time with her. Sweet precious time. One afternoon I was so tired I just crawled in her hospital bed and we napped together. She smelled like warm cinnamon apple pie. She was an amazing woman. At 82, she had over 400 people at her memorial. I wanted to help more and just had a reserve of strength and energy that had to be paced. So, in my electric cart, I was a greeter. We were overwhelmed with how our mom affected people's lives. She died of Parkinson's. Support is now going to our dad.

Blessings and Joy to each of you. As the Als' would say, "LOL"!
Frizzel
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Frizzel. Sorry about your mom but happy that your breathing is better. Isn't it amazing how a little plumbers mistake can cause one such misery. Glad things are looking up a bit for you. AL.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Hi Frizzel,
That Hydrogen Sulfide H2S is very dangerous. Years ago I worked in an oil plant where we had to remove that from the oil. We had to walk around with detectors on our side to tell us when we were exposed because the first thing it did was kill your sense of smell, then the next was it shut down your breathing. I'm so glad they found and fixed this problem for you. It is very dangerous. We have had people exposed to it in the past that just fell over dead.

I'm sorry to hear about your mom. I know she will be waiting for you at the gates, when your time comes.

Keep hanging in there my friend. You are a blessing to us all. We need you around for a long time to come. I'm sorry you are experiencing these symptoms. Know that you are not alone.

God Bless
Capt AL
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Hi Frizzel,

I know you must be might relieved about your breathing! I am so glad your BIL was able to figure the problem out.

Sorry about your Mom. Sounds like she was a wonderful woman.

Take care.
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
tribute to my mom

Thank you Al. My mom taught me in a very gentle, realistic way that life isn't fair. Watching her die the way she did paved the way for us to see first hand, she lived what she taught us.

I'm using Dragon Natural Speaking. Very helpful voice recognition software.

All the best!

Frizzel
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Frizzel- I can't believe you were going through all that and still took time to PM me about my health and my Mom! You are an incredibly caring and giving person. That offer to make you a cup of tea still stands. We will make it virtual tea, though, somewhere in cyberspace. Hugs, Cindy
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Cindy

Maybe we can post a beverage time that we can have tea, coffee or a smoothie together. Then we could all say where we were while having it. Cheers to another day!
CIndy, look at your life and see how much you give and what you and your family are going through. YIKES! Thank YOU for PM me AND responding to the new posts here on the forum. You're one awesome woman!:-D
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Dear Frizzle,

My heartful condolences to you and yours on the death of your mom. Thanks for your good words and caring attitude. and... so glad to hear you are feeling a bit better and the problem with the tub is fixed. God's blessings and peace. Peg
 

Ontario caregiver

Active member
Joined
Mar 4, 2005
Messages
72
your mom

Sorry Frizzell about your mom, she lived a long life, and that special time napping with your mom was great for you and I bet it was a great feeling having her daughter next to her.

Life is so unfair, but we must remember the good times, as it helps people through the rough times.

I wish you all the best.


From one fizell to another frizzell
 
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