Confirmed

[MyNexus2U]

Second opinion confirmed my suspicions of ALS today. It has been a long frustrating road at times. My situation was a little unique because of financial restraints and getting to the right kind of neurologist who specializes in neuromuscular disease. The wonderful and kind people in this forum have been such a wonderful asset. Nobody wants the diagnosis but life is what it is. I am a veteran and now we should have a lot of much needed help. We have the new MDA ALS clinic in Tulsa now in which I am scheduled for the next clinic date. It seems odd to be relieved in some way of getting the diagnosis of ALS. Since ALS is now considered a service connected disability my surviving spouse will also be eligible for benefits which give me peace of mind. My main concern in these first battles was for my wife and children of which are grown and are now starting families of their own. My focus now can be on living each moment to the fullest. I have not given up, just the opposite. Like any soldier or firefighter, I have been both, I am thinking of my brothers and sisters of these terrible diseases as well. I will help and teach along my journey as I am able. Thank you again to everyone that has offered advice and support in these difficult times.

Bryan

 

[BlueandGold]

Bryan I am sorry you got the final diagnosis of ALS. I commend you for the attitude you have adopted. This will be a wild roller coaster ride for you and your family. I believe maintaining as positive of an attitude as you can will help. You will have down days, especially with loss of functions but I encourage you to periodically go back to this post you posted today. When I feel myself starting down a dark road, I go back and search for my positive posts and remember the things I am thankful for every day. ALS sucks and there's no getting around that. However learning to adapt to your changing mobility issues and figuring out alternative ways to do the things that bring you joy means you are not letting ALS knock you down.

I pray you have a slow progression and make some of the most wonderful memories with your family that you ever have.

Vince

 

[Nuts]

Bryan, I'm so sorry -- we always hope that the second opinion will turn away from ALS. As Vince said, you seem to be approaching the situation as well as anyone can. Emotions will fluctuate, but you can always vent here. You have another home here. Please invite your wife to join the forum, or if she is more comfortable leaving you to have your own space, tell her to search for ALS Caregiving Spouses on Facebook.

Becky

 

[affected]

Sorry you are joining the family, but your attitude is wonderful and will make a huge difference to your and your families quality of life, that is certain.

 

[soonerwife]

So sorry Bryan. I am glad at least you will be able to get some assistance. I met you at the Tulsa ALS Resource Group last month. I am sure I will be seeing you there again. They are a great group as well as this forum which helps so much.

 

[Ells]

So sorry Bryan.

Even though I get you're now eligible for various types of help, it still sucks

 

[KimT]

Bryan, Hang on to that wonderful attitude. You will bless many people along your journey.

 

[edschia]

I am so sorry for your confirmed diagnosis but commend you for your bright attitude. It took almost two years for my ALS diagnosis and when the neuro finally said "You have ALS" I was determined just to accept it and enjoy whatever time I have left. I am also willing to consider clinical trials and if I am not to be helped, hopefully someone else will. Take care and stay on this forum. I have been a voyeur for a few months and am blown away by everyone's knowledge and compassion!

 

[lgelb]

Sorry to hear, Bryan, but happy to hear you will be getting VA support. Pipe up/chime in any time.

Best,
Laurie

 

[MyNexus2U]

Thank you everyone for all of your support and encouragement. I know that it may seem odd for someone to be happy about this terrible diagnosis. Even with a diagnosis of PMA the forest was going to burn down anyway. At least this way I am able to get a lot more help from the VA. In my experience with them some know what is going on and some do not. It has been frustrating at times and very hard for me to be patient especially with anxiety and depression on board as well. They have provided me with the BEST mental healthcare team available. My therapist has done more for me in the four months since she joined the fight than any others in the past 29 years that I have been dealing with these other issues. She is in the middle of her maternity leave now, she's having her first a little boy. If she is one tenth caring as a mother as a therapist then this little boy will hands down have the best mother in the world. I should know because I had a very good one and am married to another great one. I have resolved to teach as many of my providers as I can about PALS and how to care for us. Many in my experience so far just do not know because lack of experience with this disease and those that are similar to it. We are a rare bunch and that is a great thing! I honestly believe that with the awareness of this disease that it will soon be defeated. It is up to PALS and CALS to keep this fight going. The CALS and PALS in this support group are evidence of this and as horrible as it is I am truly honored to be among you. Thanks again to you all!!!!!

Bryan