Hi Everyone

mpnatx

Distinguished member
Joined
Aug 5, 2014
Messages
350
Reason
PALS
Diagnosis
11/2014
Country
US
State
Texas
Hi everyone,
I haven’t been on the forum for awhile. I wanted to say hi and let you know how I’ve been doing.
In a few months, It’ll be five years since my diagnosis. My progression has been slow and I can still walk and talk. I can walk unaided for about 30 feet before I wear out. If I know I’m going to walk further, I use a shopping cart or a walker. I Once got stuck in the middle of the store, couldn’t take another other step. That was a lesson.

I have a PWC, but can still navigate using furniture and walls.
However, I’ve broken three toes and my foot, this past year, on three separate occasions walking into things. No falls. The furniture seems to be jumping out in front of me! Clumsy!

And, I can still drive. Although, if my clonus gets worse, I’ll have to give it up. I know, be careful.
My FVC is at 50% and occasionally use my trilogy.
Oh yeah, I also had a stent placed in my coronary artery a few months ago. Easy!

I attended clinic last week. The neurologist said I could very well be in the 10%. If nothing else gets me first. I have a couple of other medical issues, so that doesn’t seem likely.

When I was first diagnosed, like everyone else, it was a shock, but somehow not devastating to me. I was diagnosed way before I would have sought medical attention for the issues that eventually surfaced. Went in for a pinched nerve, walked out with probable ALS or MMN. I tend to think that has given me a couple of years due to early diagnosis.

I’m fortunate for slow progression. But it does have a few drawbacks. Countless times it’s been suggested by friends and relatives that I may not have ALS. Maybe I have this or that? I see their point. I was given several years to live and I’m still here. But, I understand that they don’t have a clue. And, it’s too exhausting to explain.
I once said to the specialist “ Maybe I don’t have ALS”. She looked me in the eye and said “You have ALS”. I also told her I was experiencing pain. Got the usual response “ALS doesn’t hurt”. Told her, “With all due respect, I disagree “.

People also find it odd that I find this disease fascinating and interesting. I have no fear of dying.

Many friends here have come and gone over the years. They all have left their mark on me. I’ll always remember their courage and bravery, and how much I’ve learned from everyone. I think about them often. Perhaps I feel survivors guilt? Maybe.

Lastly, in my opinion, Caregivers are the real heroes. Priceless! The sacrifice is both physically and emotionally overwhelming. The loss is so painful. My empathy is with you. I was a caregiver for my Dad.
Thanks to all who contribute and share their knowledge and experiences!
Wishing you all comfort,
Marty
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,615
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Marty I am thrilled to see you posting and that you are doing ok. I admit, I thought of you recently and that you hadn’t been around and thought the worst. So happy I was wrong!
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,420
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
So good to hear from you, Marty. I value your contributions and wondered how you were doing. I love what you said, “People also find it odd that I find this disease fascinating and interesting. I have no fear of dying.”

I also find it fascinating and interesting. Everyone dies. I think most people would wish for a long full life with all our capabilities and capacities intact and then just go quickly and quietly in our sleep. Unfortunately it often doesn’t happen that way. I too am not afraid of dying from ALS. I just wish it weren’t preceded by a bunch of functional losses and dependency.

I wish you a degree of independence and stable health for as long as possible. It sounds like you have developed some good coping strategies and I hope that continues.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,182
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Great share, thanks, Marty.

Great to hear from you.
 

texastc

Distinguished member
Joined
Aug 30, 2015
Messages
269
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
Texas (TX)
Glad for you Marty. Great testimonial for living each day to its fullest!! Kudo's friend.

tc
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,574
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Great to hear from you, Marty! Others with very slow progression have much to learn from you.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,808
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
So good to hear from you Marty, I also think about you and had wondered about your absence. Wonderful to hear that you are doing well still and doing it your way!
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,383
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hi Marty,

So nice to hear from you. Like you, I was diagnosed very early.....by accident. I fell running and got a TBI. I quickly gained strength back and continued to do at least five miles a day, most days. Actually, a cognitive test for the TBI showed decreased motor skills in my left hand but I ignored it and focused on healing my brain. My local neurologist, after seeing brisk reflexes in my left leg, insisted on an EMG. After that I was sent to Mayo and that was the beginning of my diagnostic process.

Had I not fallen, I probably wouldn't have even noticed anything worth taking to a neurologist for at least a year or two. The TBI might have been my trigger, although I'll never know.

I'm still walking, driving, and eating like a hog.

I have LOTS of pain and have since January 2016. So bad, I was on Oxy for four months and still take one or two pills each month to break pain cycles. I've actually lost 1.5 inches in height during the past four years because my scoliosis has gotten worse and maybe some due to just age.

Anyway, don't be a stranger. We like hearing from you.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
635
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Good to hear from you, thanks for sharing! Thoough my progression is not as slow as yours (Id describe mine as slow-average) I also feel I was diagnosed early and wonder how much bonus time Ive had as a result. The only reason I was diagnosed when I was is because we used sign language with my special needs son. Im bulbar onset but back then I perceived my bulbar symptoms as a sinus issue. When weakness started in my fingers I noticed I couldn't form some of the finger positions for sign language. They are tricky and require a high amount of dexterity way more than any normal daily hand/finger task. I thought it was tendonitis and I went to a hand clinic. That led to diagnosis within weeks. Who knows how long I'd have waited before getting it checked out if the sign language weren't highlighting the weakness.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,105
Reason
DX MND
Diagnosis
07/2014
Country
US
State
Colorado
Thanks for dropping by Marty! Like you, I have relatively slow progression. I agree that the CALS are the real heros.

Be careful about walking into things! I should know. Also, I encourage you to use the PWC. It gives great freedom and removes the risk of falls from the equation (when you are using it!).

Steve
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
126
Reason
PALS
Diagnosis
04/2018
Country
US
State
Minnesota
It’s nice to hear how you’re doing, Marty. And glad you are still capable of doing so much so well for this long. Keep on keeping on!
 
Top