mpnatx
Distinguished member
- Joined
- Aug 5, 2014
- Messages
- 372
- Reason
- PALS
- Diagnosis
- 11/2014
- Country
- US
- State
- Texas
- City
- Austin
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
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
