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Tlo57

Active member
Joined
Sep 16, 2017
Messages
46
Reason
Lost a loved one
Diagnosis
09/2017
Country
US
State
FL
City
Winter haven
I registered-joined this forum today after researching several other sites because I felt that it was genuine and informative. My 57 year old twin brother was recently diagnosed w/ ALS at Duke University. He was told that the degree of certainty is >90%.

He had an appt. in Knoxville w/ a specialist for a 2nd opinion who can't agree nor disagree w/ dx. He is having more tests done on the 18th. He said it started w/ drop foot a couple of years ago, so he had braces made to offer more support. His throat has been cramping recently so he was referred to Radiologist??? for swallow test. He took a fall last week and wasn't able to get up w/out help. He's been complaining of atrophy, severe fatigue and seems very frightened which is understandable.

No ALS in our family, so I'm having a difficult time comprehending this disease. I'm in shock, emotionally distraught and angry. We have always been close, having shared the same friends growing up, attended same schools, joined military a few mos. apart and finally lived together on and off as adults because he's had some hard x's. I've read every article I could find and frankly, haven't gained any insight other than no idea what the cause is, it's eventually fatal, meds prolong life by a few mos. and it's a truly horrific disease.

I'm a strong individual, having served in the Marine Corps and dodging my fair share of bullets throughout the course of my life, but I'm not sure how well I'll cope with this because it's too darn painful. I'd rather have this disease than watch the person I love most in my life suffer. Thank you letting me share this and if anyone can offer words of encouragement or their experience, I'd appreciate it.

On a lighter note, I have to thank Gregk for informing me that I initially posted in the wrong place. Scary thing is I read all of the forum rules and directions! I'll keep future posts short, just wanted to explain chronology. Thank you
 
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Sorry to welcome you. The people here are most helpful. I was diasgnosed last October and this is the best forum for answers to questions.
 
Welcome. Very sorry to hear about your twin. If his symptoms really started a couple of years ago, his progression has been fairly slow. To the list of insights you mention, a couple more: strong family or friends' help is a great thing to have, staying on top of equipment needs is a necessity, and the VA has richer benefits for ALS than you will find in any civilian context. Yes, it's a horrific disease but he has more life left to live, and he's fortunate that you'll be there to help him do that. If you made it through the Marines, you'll be fine -- not always good, but fine. Give yourself and him time to process, and keep talking to each other as it happens.

Most ALS is not considered "genetic."

Best,
Laurie
 
Sorry to welcome you. The people here are most helpful. I was diasgnosed last October and this is the best forum for answers to questions.
Thank you for your reply KW. I've read enough threads, that's for sure. Many of my questions have been answered, however, there's much more for me to learn as things progress. Again, thank you
 
Welcome. Very sorry to hear about your twin. If his symptoms really started a couple of years ago, his progression has been fairly slow. To the list of insights you mention, a couple more: strong family or friends' help is a great thing to have, staying on top of equipment needs is a necessity, and the VA has richer benefits for ALS than you will find in any civilian context. Yes, it's a horrific disease but he has more life left to live, and he's fortunate that you'll be there to help him do that. If you made it through the Marines, you'll be fine -- not always good, but fine. Give yourself and him time to process, and keep talking to each other as it happens.

Most ALS is not considered "genetic."

Best,
Laurie
I'm not one to express emotions, especially fear or sadness, but as I sat here reading your reply Laurie, I cried for the 1st time in years. Mike and I are originally from NYC, but relocated to Florida about the same time. He moved to Knoxville a year or so ago because of wife's family proximity issues. This is why I wasn't fully informed of his symptoms until now. He recently had a mild heart attack and had to have stints which I was aware of, but knew nothing about the ALS because the medical professionals were stumped up until Duke. I'm planning a visit in the next couple of weeks. His wife and I had a falling out, so we haven't spoken in awhile. I made it a point to reach out to her for his sake, but no reply as of yet. Even if she refuses to reconnect, it's not going to keep me from spending as much time w/ him as possible. BTW, I'm not COMPLETELY responsible for the disagreement lol. She tends to keep him away from me and his grown children ughhhh. When he fell, she was there to pick him up, but he worries that she'll bail when he's no longer able to function on his own. I've reassured him that I've never abandoned him during troubled x's - not my style. He did say angrily "it's not the same -you're not my wife!!!!!" and I understand that. You're right Laurie I have to be the strong one. Now is not the time to be a wuss. I believe he utilizes the VA for his healthcare needs. In fact, they made the braces and he still continues working selling cars as they provide health insurance. His dealership is very supportive, but when it's to call it quits and apply for compensation we are fortunate in that my significant other has practiced law (workers comp, SSI & SSD) for +45 years so he's more than happy to assist in any way he can. I've read some posts regarding compensation claim denials and other members pretty impressive knowledge. If anyone from Fl has legal questions in that area feel free to holla. He does a lot of pro bono and has advised most of family and friends. Again Laurie, thanks - you're really sweet and totally on the ball!
 
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As others have mentioned, sorry to have to welcome you here. From one military member to another, glad you found us. The VA hospital in Tampa is outstanding and they do have an ALS Clinic. They have been very responsive with providing everything I need, and in most cases, before I needed them. There are a lot of programs available (modified vehicle Grant, Special Housing Adaptions to name a couple big ones). The military views ALS as service related so it is an automatic 100% disability with the VA. That also opens many FL state benefits. Hopefully your brother is aware of all of this.

Regards,
Bruce
 
As others have mentioned, sorry to have to welcome you here. From one military member to another, glad you found us. The VA hospital in Tampa is outstanding and they do have an ALS Clinic. They have been very responsive with providing everything I need, and in most cases, before I needed them. There are a lot of programs available (modified vehicle Grant, Special Housing Adaptions to name a couple big ones). The military views ALS as service related so it is an automatic 100% disability with the VA. That also opens many FL state benefits. Hopefully your brother is aware of all of this.

Regards,
Bruce
Thanks so much Bruce for info. I was extremely surprised that the VA provides compensation for ALS! My brother used the Tampa Va, but now lives in Knoxville. I've used it too, but much preferred St Pete! Just couldn't handle the 3 hr round trip drive even though they reimbursed me for travel. I used The Lakeland clinic and it was great. I have so much info. to give him. The VA assistance would be such a relief. I read another thread by a couple of members/fellow brothers who served discussing R1 & R2 ratings and was amazed. I currently receive 10% for my back, but I'm appealing. I know it'll take 10 years, but oh well lol. I couldn't believe the amt of compensation under certain categories. Very generous, but well deserved. I followed some VA links that our brothers provided that where extremely helpful. Hope you're doing well. Maybe we will run into each other at James Hayley. It's doubly nice to speak to my brothers and sisters who served! Thanks Bruce for reaching out to me. DaChief - I like that.
 
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Welcome, although I wish it were under different circumstances. You will really like it here. I came to this forum late in our journey. I care for my husband Brian. It's not surprising at least from my perspective that it took a while for your brother to get a DX. It took us 2.5 years and a bunch of tests to finally get to the bottom of what was going on. That was 13 years ago when he started with limping that progressed to drop foot. Then finally DX 10 years ago. He is now vented for 7 years.

We are here for you and will do our best to answer any questions you may have. Make your way over to the CALS thread too. Lots of good info sharing going on, with tips and tricks and whatever. General support from those who know what you may eventually be going through.

Definitely make time to be with your brother, and don't let your SIL keep you from seeing him. One day she may just come knocking when the going gets tough.

All of us here know you can do this, it's not easy, but it is doable.

Hugs,

Sue
 
TLO, if you haven't already, please click over to our "Military Veterans and the VA" forum. At the top, you'll see a post stuck there. Print and read the 10-page PDF "Guide to Veterans' Benefits."

Sorry about your twin brother. That's gotta be doubly tough. If you have VA questions, I might be able to help: I worked at VA Fee Basis as a troubleshooter for 3 years. Also, my PALS, my wife, was a doctor at the Orlando VA.
 
Welcome, although I wish it were under different circumstances. You will really like it here. I came to this forum late in our journey. I care for my husband Brian. It's not surprising at least from my perspective that it took a while for your brother to get a DX. It took us 2.5 years and a bunch of tests to finally get to the bottom of what was going on. That was 13 years ago when he started with limping that progressed to drop foot. Then finally DX 10 years ago. He is now vented for 7 years.

We are here for you and will do our best to answer any questions you may have. Make your way over to the CALS thread too. Lots of good info sharing going on, with tips and tricks and whatever. General support from those who know what you may eventually be going through.

Definitely make time to be with your brother, and don't let your SIL keep you from seeing him. One day she may just come knocking when the going gets tough.

All of us here know you can do this, it's not easy, but it is doable.

Hugs,

Sue
You are an absolute doll Sue.Thank you for such kind and encouraging words. I've been tip toeing all over this forum for a few days in an attempt to get 1st hand knowledge from Pals & Cals. Initially, the acronyms & lingo had me lost! Slowly but surely I'm getting there. This forum has also made me more considerate of other people's feelings and hardships. For example, I take for granted simple tasks such as using an IPad, while others have to navigate much differently, using their eye gaze to express themselves. I've read somewhat hysterical posts from those who are convinced that they have ALS despite being given a clean bill of health from a specialist and yet I haven't seen anyone affected by by ALS belittle them. I know at some point a member has to be firm, but they do it w/ class and a ton of of patience! My mother is a hyperchondriac as was her mother. I mentioned to another member that when I first addressed my brothers illness w/ her she basically made it about her by complaining about her insignificant/imagined ailments. I wanted to verbally rip her apart for being so selfish, but somehow managed to keep my cool. My bff from childhood had to remind me to be patient because she's in her 90's. I once overheard a Doctor and several nurses say horrible things about her while on the other side of the glass while she was having an unnecessary/ expensive MRI. They didn't realize I was sitting behind them. I was so embarrassed for her and felt ashamed because of her. I've read today that it's a ligitimate disorder. I'm learning to be more tolerant because of the good examples being set by other members, including you. If possible, I'd like to hear more about your experience with how you initially felt, coped w/ your fear, grief, anger etc. and where you're at w/ everything now. I'd also be interested in learning more about Brian's journey physically and emotionally. You said to stop in at a Cal's discussion which I'll certainly do. I was wondering if you could help me navigate my way around the forum. If I have questions about progression, denial issues and the best way to confront this w/ my brother where/ which thread would be most appropriate or do I message instead. I just want to adhere to the rules and be more considerate of others. I should probably rearrange the format of my posts and begin using paragraphs.
 
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TLO, if you haven't already, please click over to our "Military Veterans and the VA" forum. At the top, you'll see a post stuck there. Print and read the 10-page PDF "Guide to Veterans' Benefits."

Sorry about your twin brother. That's gotta be doubly tough. If you have VA questions, I might be able to help: I worked at VA Fee Basis as a troubleshooter for 3 years. Also, my PALS, my wife, was a doctor at the Orlando VA.
I've been checking the VA forum out! I've gained a wealth of helpful knowledge from you guys. I'm going to print a copy for me and forward one to my brother. Geez, if I have any questions who better to ask than you. I'm very sorry about your wife Mike. I've never been treated at Orlando VA, however I've heard very good things about it. I was especially touched by your devotion to her and the loving way you speak about her. My brother's name is Mike and my partner is named Mike - good name. Very nice to meet you, my name is Tina. Many thanks, I'm off to the VA section of this forum!
 
I read the documents that you suggested. They are very well written Mike and super easy to follow for someone like me who rode the little yellow bus lol. The step by step information you've provided is invaluable for veterans w/ ALS to successfully file a compensation claim. Too bad you weren't in charge of overhauling/rewriting all of the VA'S directives relating to Disabilty. Thanks Tina
 
Tina - one very good place to ask questions related to care or what you might be feeling about what's happening with your brother is in the CALs forum. PALS occasionally jump in there to give their perspective too, but mostly its those of us who deal with the day to day of caring for our loved one. However, many of us check the other forums as well, so we may come across your post there.

My journey with Brian was one of ups and downs. We own our own business and he was a workaholic. Part of the reason it took so long for us to get a DX is his stubbornness. Getting him to give up a few hours at the office to get to the Dr was like pulling teeth. "I don't have time for that" was his general response. Once we found out exactly what we were dealing with, he didn't want to tell anyone. That was hard. I was hurting and scared, but I wasn't allowed to reach out for help, because I wasn't supposed to tell anyone. It helped when I could finally share. I'm not sure I really went through anger.

For the first 2 years after DX he walked with a cane, then had a nasty fall and decided to finally start using a walker. About 6 months later he was using a wheelchair. His breathing gave him more issues before his upper body gave in. In 2010 he was trached and vented, after a very scary clinic visit. His physician brought up considering a vent, but told him to take his time considering this, then pulled me aside after and said, think fast, he could go at any time. I wasn't part of this forum then, but did do some research. However, it was PALS based. We talked about it and decided to go for it. 7 years later he is still with us. For the past 2-3 completely bed bound, the last 2 fed completely via feeding tube. Last year due to the ACA, I lost nursing and we don't qualify under any other program, so I take care of him myself and still work from home for our business.

We have 2 children who where 12 and 20 at the time of DX. Both can completely care for their father, vent, baths everything. It's been a rough journey for them and I've did as best as possible to keep their lives as normal as I could. DS is now married to a wonderful gal, and DD has been with her BF for 5 years and he too is wonderful. She also started PT school this fall.

He uses a computer that he controls with a switch with the very little movement he has left in 1 thumb. From there he can go online, email, youtube, netflix, control the TV. He seems happy.

Over the course of these last 7 years we have gone through 4 scares that I thought "this is it", the most recent this past April. April was bad, very bad, but somehow he came through. I call him my cat with 9 lives.

Since being on this forum I have learned a lot about myself. It's been a HUGE place of support and has helped me focus a bit more on me and my health. I've started seeing a therapist, as I tend to box up my feeling and hide them away to make it through the day. We are working on opening that box and dealing with things. I have a thread over in the CALS section called "Struggling" Pretty much bare my soul there at times.

Please feel free to ask questions, so many people here including many past CALS like Tille and Mike, to name a few, that stick around to help the rest of us navigate through this mess.

Hugs,

sue
 
Sue-
Thanks for sharing that. It must have been difficult losing your help. I would think that in some cases caring for a PAL could be more time consuming than caring for a child. Hopefully you get some help from family. I told my brother yesterday about you and ur husbands slow progress. He went for a full MRI today, part of 2nd opinion. I'm waiting to hear. I think he and Brian have similarities in their progression. The drop foot was 1st symptom couple years back. I grilled him yesterday about what he's noticing. He said that he's very weak, to the extent that he's a car salesman and has to tell customers to open the door to check out interior because it's too much effort for him. He's having difficulty lifting his arms to wash his hair. He wakes up w/ abdominal, leg & neck cramping. He also has significant upper & lower atrophy & dents in his shoulders. I was wondering if his progression will be more rapid at this point. I read about your struggling and find your transparency refreshing. Good to know that Brian's happy. For some reason I keep ending up at the same place in this forum despite my efforts to better navigate. Technically challenged over here. Well, wish me luck, I'm hopping over to CAL forum. I might get there by midnight lol. See ya there?
 
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By the way, Tina. Please don't include the "quote" when you reply. Some PALS have a difficult time scrolling through all that stuff.

Short posts--better.

Short paragraphs--more better.
 
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