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I must share this PM from Z....it will give you a better idea of his strength and compassion

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2seaoat



Seaoat, I read this in one of your latest posts in the General Section, and felt compelled to offer you some advice.

I don’t talk about this part of my life openly on the forum, though I am not afraid to share information about it. Perhaps one day I will share openly. I am disabled from a medical condition I have battled for the last 30 years. It really started to affect my mobility after 2000, and from early 2006 onward I have not walked at all (I use a power wheelchair).

I worked really hard to stay on my feet and mobile for as long as I could. I can share some of my secrets with you, which might help you to rise up from chairs, and the like.

To get up and down from chairs requires strong thigh muscles. When my thighs grew weaker, this became harder. The thighs also help keep your thighbones in their rightful place, which holds your pelvis in place, which holds your whole spine in place. When the thighs go, your whole sitting posture gets screwed up. After 2000, I had to be conscious of the height of the chairs I sat in. I actually took a measurement, and found I could not sit in a chair-seat that was less than 17” off the ground, and I also stopped sitting in chairs without arms, if possible (I needed to be able to help push myself up using the arms). In 2003, I discovered a new trick. This entailed looping a belt around my thighs just above the knees, allowing about 4-6” pf space between each leg. This helped me focus the strength of my thigh muscles and kept my thighbones from splaying outward as I tried to stand up. It worked marvelously, and I used this method diligently until I could no longer stand to my feet.

I have lots of little secrets about methods and adaptive equipment I have used over the years to get the most out of what I have left. I am more than happy to share these with you as you grow weaker.

My medical condition is limb-girdle muscular dystrophy. I was not officially diagnosed until I was in my late 30s; though I likely have had this my whole life. It really did not start affecting me outwardly until I was 34 years old (1986). I was a career officer in the Marines then, and I could no longer pass the USMC physical fitness test (PFT). I was grounded from flying for 5-months in 1987 as I went through exhaustive medical exams at two different Naval hospitals in California. They did all the right tests, but came up with an inconclusive diagnosis and returned me to flying status. I wasn’t diagnosed officially until early 1990, after I was evaluated at the National Naval Medical Center in Bethesda, MD. The official diagnosis put an end to my military career, and I was given a medical retirement from the Marines in September of 1990, after just short of 16 years of active service. That is when I brought my family back to Pensacola permanently. From there, I used the GI Bill to go to graduate school at UWF, and then joined an environmental consulting firm, where I worked another 16 years.
I waged a fighting retreat from my physical abilities and pushed myself hard over the years. To this day, I try to maintain whatever independence I can muster. The wife has to help me with more now, and I haven’t driven a vehicle since 2008; but I do what I can. I have done all of my own occupational therapy, and even taught myself how to put a pair of pants on while sitting in a chair. I am more than happy to offer insights and information to you.

My name is Phil.


Well, this kind man would send me suggestions on how I could better get up as I was weakening with my ability to get out of chairs. I know also he contacted Bob to help him after his loss of the use of his leg. His quiet strength will be missed.

I had to share who this man was.

PkrBum

PkrBum

Thanks... he really was a kind and generous person... and certainly well read. We spokje in pm mostly about scientific things and physics. But he also was concerned about my medical challenges and offered advice to me too. I find a growing sadness as we lose more members... almost a sense of doom.

RIP Zman.

Joanimaroni

Joanimaroni

A very kind and thoughtful man. RIP, you had so much to give and too little time.

2seaoat



Still very sad. I guess it will simply take time.

ZVUGKTUBM

ZVUGKTUBM

Thank you for sharing this, Seaoat. In a way, you took the pressure off of me, as I was hesitant to share the very information you posted. It is nice to know that dad wasn't afraid of telling folks. I needed to know that.

I read it to my mom, and she said she could hear his voice saying the words. I could too. Dad was always proud of his innovations and tricks he figured out. He was hellbent on maintaining as much independence as he could. In fact, I'm certain that played a large part in his decision to discontinue treatment. He was aware of the reality of his future.

Now that I can be open about it, Dad's muscular dystrophy had greatly diminished his pulmonary function. That coupled with the pneumonia (I'm not sure which one affected which more) made him take a nosedive. I'm sure there were little things along the way during his hospitalization that maybe could have bought him some more time, but his prognosis was not good.

Dad was a genuine person with a strong ethical compass, and he was indeed very generous. And kind. He used to say, "I have more faults than an earthquake," but I don't believe it. I have nothing but wonderful things to say about him. I'm glad you knew him for who he really was.

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PkrBum

PkrBum

Such sweet words. Your love and respect for him shine through.

2seaoat



Your dad was concerned about my health. He made some good suggestions which have helped me, but more important over the last ten years he was able to teach me and share his reading. I was reluctant to share his health with anybody, but he told me he had no problem with the same. I wanted our forum members to know his quiet courage, and generous nature where my health was important to him. I am gripped with deep sadness which is hard to explain. My wife understands when I get this way as she came with me to T's funeral, and saw me mope around for two weeks after we lost Bob. It will take me a couple of weeks to have this sadness pass, but I am glad I could share some of your dad's writings. Your father was a good man.

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