Hello everyone

Hello everyone

I would like to start by introducing myself. My name is Allen, I was diagnosed with MS in July of 2014. I am a former Corperate pilot and flight instructor. Needless to say, MS took my passion away from me. I live in Duncan Oklahoma where the winds come sweeping down the Plains and summer Temps are unbearable to say the least. Didn't bother me much till my thermostat broke! MS has taken the things I loved in life and ripped them from my grasp. Trying to find new passions in life, new reasons to keep on trying. I'm new here and have been reading y'all's posts trying to keep positive throughout this nightmare. Thank y'all for the inspirational posts. The challenges are Neverending. I had a horrific auto accident in 2000 where I was ejected from a vehicle at 75mph and the vehicle came to rest on top of me. After a year of painful rehab I got back on my feet. I thought I knew what pain and suffering was. Then I met MS, I had NO idea. Well I could go on and on but for now I will just say hey before I start complaining lol Hope y'all have a blessed day.

Allen

The picture is of me before MS my profile pic is pretty much now.

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  • Welcome Allen! I was also diagnosed in July 2014. You will find this to be a great support group! Everyday is a new challenge, but still we rise! Have a blessed day!

  • Hello Allen and welcome to the best support group going

  • Welcome Allen!

    You can complain all you need to, we all do once in a while.

    Sorry about losing your passion but, you can find a new one. Try and find a cause that you are passionate about, volunteer (if you can), find a hobby that you enjoy.

    My husband became disabled before I did (he has CMT a neuromuscular disease) an he became my house husband. I was still in college and working, when he became disabled, and we had a tottler at home so he took over cooking, cleaning and caring for our son. He had never cooked before but was a natural. He started making bread, cakes, etc, and could cook the greatest meals. After college I worked first, as a chemical tech for a Marine Science institute in VA, then went back to school for a biology degree. I worked at Southern Company in Birmingham Alabama after that. When my daughter was born she was multi handicapped. We knew we needed more income to help with her needs so I checked around and found that there was a nuclear power plant in the system that I worked for and knew that I could make a higher salary in that industry ( my father and 2 brothers worked in the nuclear industry, so I knew about the work and potential salary). I found a job opening at that nuclear plant and transferred down there. 5 years after starting that job the fatigue and pain, of my MS, made it very difficult to do my job. The company tried to make accommodations so that I could continue to work but after trying 2 other positions, which they let me jump over other employees to get, my boss, my doctor and I came to the conclusion that it was time to retire.

    That was so hard, I had had some kind of job since I was 16. I didn't know how not to work. I would still cut the yard, with a riding mower, in the evening when it was slightly cooler out but in the summer, in lower Alabama, it is never cool. I first would wet a rag and put it around my neck, then I started soaking my hat too, finally I just stood under the hose and soaked my clothes too. Most times I would make myself sick for days. A neighbor, that was a co worker, told everyone at work that I was faking it because he would see me cutting the grass. He had no idea how much I was trying to not let MS change my life. How bad I felt because when I tried to do things around the house and yard, to help my husband and keep a sense of self worth I would hurt so bad and get so fatigued that I wanted to die.

    After a while I realized that I could still contribute around the house and yard but at a slower pace and on a smaller scale. I had some good years where the symptoms lessened a bit and I helped more but last year A new attack knocked me back a bit. We will see what I am able to do this year.

    This was long but I was trying to show that life goes on and we can adapt to our circumstances. My children are grown and now it is just myself and my husband. Life has been different than I expected it to be but it has been good.

    Take care and never give up.

  • Absolutely beautifully said, Morllyn.๐Ÿ’•

  • Thank you!

  • Morllyn

    I so very much enjoyed reading and knowing more about you! Love your positive outlook and strength ๐Ÿ˜Š๐Ÿ‘

  • erash Thank you!

    I can always find someone, actually lots of people, who have it worse off than me and my family, actually we have had it pretty good.

    That decision to work in the nuclear industry paid off. With all the over time I worked, the companies match what you save plan, a long term disability insurance that the company offered and my husband's ability to stretch a dollar, we have had a good life.

  • Good afternoon Allen5280, I'm Fancy1959 and I would officially like to welcome you to this incredible chat room. This chat room is full of the kindest most considerate and caring people I have ever met and best of all they understand exactly what you're going through because we had this Beast attack us and try to claw our dreams away from. Whatever you do, do not let this make you afraid to keep on living.

    You might have to alter your dreams and approach them from a different way but do not let MS take away what is uniquely you. I was a very athletic person, an outdoor enthusiast, and an avid horseback rider prior to being struck down by MS. Okay I had to give up being an athlete because trying to play competitive High Level Volleyball was impossible, I no longer enjoy backpacking and being outdoors Non-Stop comma but I refused to give up the passion I have had for over 50 years, horseback riding.

    I might no longer ride my spirited black Walking Horse but I am riding my calm, cool, and loving Walking Horse pony. My plan is to build back up my strength, balance, and endurance and then hopefully get back onto riding my big Walking Horse in the next two to three years. I realize what matters most at this point it's keeping myself safe and free from incidents like falls. So I might not be able to backpack anymore but I can enjoy the outdoors just as much by getting out and trail riding through the woods and just enjoy the freedom that riding on the back of a horse can bring!

    Now let's brainstorm together and figure out how we can get you back up into the sky perhaps not a copilot on a corporate flight but up in the sky none the less. You game? Surely we can come up with plan of action. I look forward to your response. Until then please take care and remember together we are stronger!

  • I sincerely thank you for your kind words of encouragement. When I came to the point where I realized I needed to step down from my position as a aviator, long before I knew what was wrong (2010) was due to anxiety. Which later was deemed the onset of MS. Over the years I haven't been able to even bring myself to go to an airport except on 3 occasions. It's just to hard for me. Being an aviator wasn't just an occupation for me, it was everything to me. I am grateful for the time I had. I never worked a single day as a pilot. If one loves what they do they really won't work a single day doing it. It was my passion, it was my life, it was who I was. If I even think of flying again, it brings tears to my eyes. I am trying to find other things that can fill the void. Had done a few things over the years to try, however MS has managed to take them as well, Motorcycle etc... all and all I am blessed. A year ago I couldn't walk more than a few steps without falling. Even with a cane it became excruciating. Couldn't hold a conversation due to stuttering and not being able to complete a sentence. Cognitive issues, memory issues, Anxiety disorder and the list goes on. MS has taken an aggressive course and has attacked the bottom of my medulla where my Brin and spinal cord meet. 8mm out of about 9mm of my brainstem are irreversibly damaged. Thanks be to the Lord I have had a bit of Devine intervention. My MS specialist at OU medical told me he believes in miracles. I shouldn't be walking or talking at all. I now get around unassisted most of the time. I usually have a couple hours a day I can get around some. I am living independently for the most part. I have so very much to be thankful for. Just harder sometimes than others going at this all alone.

    Thank you, have a blessed day

  • Some days it is hard to spot the blessings in the midst of our pain and disappointments. I pray your good days outnumber your bad ones. I'm sorry you are going this alone. I'd be lost without my husband. But I hope you find us strong shoulders to lean (or cry) on when needed. We're always willing to to cheer alongside you and your accomplishments, and provide humor on those days when laughter is needed to lightens our hearts.

    My husband just retired from his piloting career. He lived his dream, but I think he would have given up some of his dream if it had meant I wouldn't have lost my own. But I'm thankful for all I do have. Like you, I take it one day at a time, and am grateful for unexpected miracles ๐Ÿ’•

  • I've been struggling for years with being a 'Martha." When I found out I had MS, it certainly helped me begin to change that! Do I wish I didn't have this? Absolutely! But there have been so many good things that have happened as a result, and I lean more heavily on God now. I think it's easy for us to identify ourselves based mainly on what we do, so it's a big challenge to figure out who we are a little better and to feel confident that we have value way beyond what we do.

    God bless you and help you adapt and change.

  • greaterexp

    So agree with what u said ๐Ÿ‘๐Ÿ‘๐Ÿ‘

  • greaterexp I never thought of what your words: "Identifying ourselves by WHAT we do" say. WOW! Time to change my way of thinking. Thank you so much for your fantastic words!

    Allen5280 you'll find that many people here have wonderful words to help you through! I know this place has helped me!

    Jennie62

  • Allen5280, it's Fancy1959 back. If you could go up in the air with a friend piloting a plane and you riding along as an unofficial Copilot would you jump at the opportunity to feel the freedom your airplanes wings gliding over the air again? Surely there must be friends of yours who still have pilots licenses. Why couldn't we try to set something up with them to give it a test run for you? I would feel honored and privileged to try to help make this dream come true for you again. Let me know what you think. I look forward to talking to you soon.

  • I mentioned about the 3 times I tried going to the airport. Those three attempts over the last 7 years are just to heartbreaking. I have to go through the grieving process over and over. It's just to hard. I appreciate the sentiment but with the loss of the occupation I also lost myself. I (as we all do) have enough battles to fight. Can't keep doing it to myself. Sometimes it's better to just let go. It's enough a struggle to get a shower and dressed and try and feed myself on a daily basis if I compound that with a deep seated depression it makes it nearly impossible.

  • Welcome, Allen5280. I'm really sorry MS led you to us, but I am happy you found us. I hope you find us a great group of friends willing to listen, empathize and encourage.

  • MS is such a thief! It takes so much from everyone. Hang in there and welcome to the site.

  • Stacy,

    I know it has taken so much from all whom are afflicted with MS. I suppose I just needed to vent. I know there are hundreds of thousands of stories very similar to mine. Thank you for your kind reply

    Allen

  • Please vent away! We all need to at times in order to stay sane!

  • Hi Allen, on here we all have ms so we all understand what you are going through. Ms is a cruel disorder, it seems to attack everything that we enjoy, but in time you will find the best way to deal with it is face up to it, accept it and try and make the most of a bad situation. I could go on and tell you how ms has changed my life, but being positive about all the negatives is one way to go. Keep smiling and if you know any good jokes, please share, we all like a good laugh. I will pray a new interest will come into your life and that that interest becomes a new passion. Blessings Jimeka ๐Ÿฆ‹ ๐ŸŒˆ

  • Allen5280 Just because there are lots of stories like yours does not make yours any less important.

    Hope to hear more from you on here, whether it is venting or laughing does not matter, you are a part of this group now.

  • Allen5280, I'm sorry there is any reason for this site, but I'm glad you found us! I have found so much help and encouragement, and even though we have mostly online relationships, they have become more precious over a very short time. I hope you find it the same for you.

    Your story is very inspiring. You have had so much to deal with, but you have courage that shows in what you wrote.

    It's difficult to change our self-concept, isn't it? I think we all deal with that and can empathize.

    Welcome to a great place to share and vent, as well as find information and support.

  • Hi Allen, your story was very moving and you are a very good writer! I have a friend I met on this site who is also a pilot, mepilot61 . Look her up, you have a lot in common. You will find this is a great site to find understanding people. Welcome!

  • Welcome Allen5280 to the MSAA Community โ˜บ Where you will you will find (l feel) the most kind, caring and compassionate people l know! Without them l don't know how l would have moved forward to accepting this gaw awful monster. And Venting is definitely allowed!!โ˜บ I truly believe that, if you don't get rid of anger it will eat at you!๐Ÿ˜žโ˜บ

    I am so sorry about your car accident, and then to have MS come in on top of it? It's gotta suck. But you can look at it as a way for preparing you for it? Who knows.

    My high school yrs were in Alaska, and my dad was getting his pilot license. I went once (only cause the instructor was cute) but l understood the love of flying at that point! I also understood, that I hated puddle jumpers ๐Ÿ˜…. But it also doesn't define you as a person.โ˜บ It's who you are inside! Yeah l know, you heard it all before. ๐Ÿ˜…

    So Allen? What do you do with yourself now to keep busy? Inquiring minds want to know ๐Ÿ˜

    Oh yeah, don't forget jimeka 's birthday club โ˜บ

    Jes๐ŸŒ 

    ~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • Hi Allen5280

    Glad you've decided to join in on our chats.

    Finding those new passions is difficult but I've discovered that for me there's really so much more out there than the things I used to covet as "me"

    MS has created a gap that I can fill with experiences I didn't take time to enjoy. I hope u find the same ๐ŸŒˆ

  • Hi Allen,

    I FEEL your pain of having to give up your passion. I ALSO flew in my days before MS. But I was just a private pilot. I was lucky enough to make my childhood DREAM come true. MS has taken away MANY things from me. Besides flying, scuba diving, and pretty much fishing, and being able to do WHAT I want, WHEN I want. Oh, and teaching. So I KNOW your pain, and I am SO SORRY. I live in NW Arkansas, by the way.

  • Allen- hello. My name is Debi. I too was diagnosed in July 2014. I too had all/most things taken from me๐Ÿ˜ข I don't talk a lot here but do enjoy reading posts and have found one of the best support you can find is right here. I'm originally from Kansas (OZ) but have lived in several parts of Oklahoma. So far on this journey, I've done with no meds. Due to reacting to everyone I've tried ๐Ÿ˜ข I've been married to Tim for 43 years, have 2 sons -one in Oregon and 1 in PA. One grandson, Carson, who lives in Oregon and is a joy. I too hate what has happened to me. Tim is my caregiver and I wouldn't want to do this without him. You'll find the people here, listen, understand, give you hope, advice and are just down right wonderful people. Welcome Allen -

  • Welcome to the group Allen5280. I am Jessie. I was diagnosed in 2008 after I was going through the process of purchasing my home and being on call for the phone help desk at my local hospital. Our phone system went down and my depression soared big time and couldn't keep my composure talking to people on the phone. After our phone system was back up and running I started having blurry vision and could barley see anything on a computer system and had to go in for a vision test which then sent me for the regular test for an autoimmune tests, and a diagnosis of MS.

    I found this group to be very helpful with different questions, problems so you have come to the right place.

    Jessie

  • Thank you everyone for your responses to my posts. This is actually my first time posting anything, anywhere. I appreciate the support, personal stories, thoughts, prayers and warm sentiments. It may take me some time to respond to everything. I will say that my blessings greatly outweigh my loss. For through this I may have lost almost everything, I have gained so very much more. For what would a man give to save his soul? I can answer honestly, he would give all that he had if he truly understood what it was he was saving. Despite the anxiety of being in crowded areas, mostly due to hearing issues and being unable to sort out conversation from background noise. I have been blessed with such an inner peace I can not begin to describe. The shroud of darkness that had enveloped me has been lifted. I am so blessed with truly loving all. It is a great gift which at times can be quite difficult to adjust to. Accepting his blessing, grace and forgiveness. Trusting that even admist my darkest hour he is with me. I am exactly where I am supposed to be when I am supposed to be there. At times I have to just cry and wonder why. Then moments like these remind me I am in his care.

    Thank y'all and have a blessed day

    Allen

    P.S. I love to play the harmonica now ๐Ÿ˜‰

  • Hi, Allen5280 and welcome.

    I'm with you on the heat. I live just south of Sherman TX and I've already had heats issues a couple off times this year. Summer looks pretty scary.

    I'm sorry to hear how this disease has robbed you of so much. I know I've seen my bigger dreams fade away ... and now I get to fight to maintain functionality and independence. If nothing else, it gives me focus to my day.

    Eleyne

  • Ahhh North Texas Regional... I know it well... always wanted to take the plane out front home wiih me! It's been years but not many places have a jet on a stick out front!

  • Eleyne,

    As for the heat issues... they have effec r ed me as well... what happened to winter? Summer is going to be rough... today it got me already 87 and happened way to fast. They are forcasting record temptress for tomorrow. Going to have to dig out my cooling vest. I imagine y'all will be hot as well so please be careful.

  • Allen5280 Welcome aboard! Your story was very interesting to me. Thank you so much for being willing and open, to share it with us. I too, am new to this club, having been diagnosed 2 yrs. ago, at age 73, but think I've had bits of it for at least 35 years. I refuse to think of you as anything but a grounded, for now, pilot. With time, I am praying you will get back into the big blue skies. (I live next door to a small rural airport. Maybe that is why your story rung my bell.) Don't give up. As an old lady reading between the lines, I am hoping that you are on an antidepressant, a strong one? I have just come down, off Cymbalta because I really don't need quite that much help, but maybe you do need that one. I would encourage you to that end, since it is soooo numbing to external issues, it might be good for you. I hope also, that you are on a good DMT, like Tecfidera. My worst symptom that had to be addressed with was heavy legs (at 140 lbs, not all that heavy!), to where I was having to tell myself to pick them up and walk, and a lot of dizziness, which I have had for at least 35 years. With the 1st pill, day one, half dose, my leg heaviness improved. I thought placebo effect? It's all in my head, right? No, the effect has lasted over a year now. I'm happy with my DMT!!!! I am now in the midst of some turmoil, in that I have just ended my 1st steroid Rx for a flare, in my head. It was like there was a tight headband above my ears, and it was being tightened. Most of that is gone. PTL! Secondarily, I had stopped the Cymbalta by weaning down very slowly, and successfully. PTL! Now, an for additional stressor, my church has begun a new program called Celebrate Recovery for anyone who might have issues, where a faith based help system might help. Check it out everyone, it is awesome, tried and true, spreading all across the great USA, began in California, at Saddleback Church, all the way to rural, central, NC! Now, the 1st night literature I received showed me that I have another big issue to be handled --- "Codependence." I did not have a clue as to the ramifications of this word. CR's description of 20 bullet points, shocked me to nausea, that I am that person. I am sooo looking forward to Tuesday night now. Help is on the way! I have had the habit of putting everyone else in my life ahead of me. Now, it's time for me to find myself, too, in spite of MS and now a mental issue?

    Oh yes, one other thing about Tecfidera. I got it free the first year from Biogen. My year has ended, and with my Neuro's team help, they put in place the process for another year free, using Walgreen's and my AARP UnitedHealthcare Medicare plan, using a grant of $8,000 to pay my copays until the max out-of-pocket is reached. So, for me it is still free. Only one big problem in changing to the new coverage. For a week, I have had to fight a daily battle, one huge hurdle after another with the drug company mentioned above, to get delivery. My pills ended on Wednesday evening, my next Tecfidera arrived via Fed Ex, on Saturday morning at 10:15 am! Great, right? Somehow, while off the med for 2 days +, I became weaker, exhausted, could hardly walk. This should not have happened at all. Stay in front, and on top of any change to your medication delivery!!! (On Sunday, I was determined to go to church, if my head was still attached to my body! At first, still wasn't sure, but the heart won out over the head and spaghetti legs. Had to use a rolling walker, not good with spaghetti legs! Husband now sees I must have a wheelchair for times like these. I wept during the song service, from joy, peace, survival of that morning's battles. God is so good! Be strong in the Lord! He is able to deliver us, when we are unable to do things for ourselves!) Hey! God carries us, when we don't have wings to fly! Allen5280, mark that down as your motto! You are loved, by God, and by me, and I don't even know you!

    Sorry to be so long with this, but my heart was full. I pray it blesses someone's day today. (My Bible reading for today was the book of 1 John, the whole 5 chapter book. May your heart also be blessed by this reading, and studying.)

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