Scared and Confused

[BOSE]

Hello everyone,
I have been looking at this web site for a couple weeks now. I have finally decided to share our story. I met this really kind, sweet man a couple years ago. We got engaged and now the whole world is falling apart.

He is a 57 widower. He lost his wife about 4 years ago...would you believe she had ALS?!?!?!?! He said she had it for 10 years. He took sole care of her...and working and hiring help. After she died, we met a year or so later. He says he was having trouble at work with dropping things and tripping but kept ignoring his problems...he even had 4 by-passes and a heart attack while he was taking care of her and working.

Well to try to keep this short...after getting foot-drop(supposedly due to a probable stroke); wearing a leg brace, diagnosed at first with Parkinson's Disease losing his home because of medical bills from his wife and now him not being able to work...we were just told he probably has ALS! I cannot believe this!

I hate the thoughts of all he went through with his wife and now being DX with ALS himself...I can hardly stand it...I want to scream for him. I myself have MS but it didn't stop him from dating me and now look at us...

I don't mean to complain because this disease is so cruel to everyone but he is getting a double dose,,,he has one daughter and was so afraid to tell her his DX. I can't imagine what must be going through her mind. I don't mean to sound so selfish ...please forgive me...I am not strong when I see others go through things like this.

 

[fiddleplayer51]

BOSE,
I can't believe your story! It's unbelievable!
How long have you had MS and how does it affect you?
Please keep posting and letting us know more of your story. People here really do care and will listen to you and help in any way possible.
I'm so sorry about this completely unfair turn of events in your lives. You have every right to complain and no one would ever think you sound selfish.
I'll certainly keep you both and his daughter in my thoughts. I wish you strength and courage as you go day by day. I hope you have supportive friends and family. Take one day at a time. I hope you can gain some comfort here on the forum.
Take care,
Jane

 

[BOSE]

Thank you fiddleplayer51

I know....I can't believe all this myself. I was DX in '93 with MS when I was 3 months from completing nursing school. I raised 3 great kids by myself and started school thinking it was my turn. lol At least they all have their degrees and are doing great...for that I am truly blessed.

But enough of me...I am so concerned for my fiance. He is awesome with his attitude (at least on the outside). He just informed his daughter of his DX. He was so worried to tell her all this after what her mother went through. I know she must be terrified about ALS or MND being hereditary. I don't know much about this terrible disease and I have not heard about it being hereditary especially with BOTH parents having it.

Thank you for your concern. He knows all about this disease and all the equipment he will end up needing (after he donated all her equipment) to MD). No one would believe this mess...I can hardly believe it myself.

I know our faith will get us through this but it does help to talk about it to someone outside our little circle.

 

[crystalkk]

Bose,

I am really sorry for what you and your fiancee and his family are going through. It is really hard to believe this but I guess anything is possible. His wife must have been a slow progressor 10 years is pretty long for ALS. Hopefully if he does have ALS he will be a slow progressor also.
Where is Union City, PA? I live in Philadelphia, PA...
Was he diagnoseded by an ALS specialist?
Since I started having symptoms, I am not diagnoseded. I have heard of 4 or 5 other people in my local area with ALS all fairly young I am 39.
In my reasearch, I did read about 1 couple who both had it, but that was the only case ever reported as far as they knew.

 

[Al]

To the best of my knowledge there have been only 10 cases worldwide reported of husband and wife contracting sporadic ALS. Incredible odds of it happening. Bose, I have no idea what to say to you other than we'll try our best to help you through this.
AL.

 

[BOSE]

Thank you for our concern

We have been to two neurologists...the last one is the ALS specialist from the Cleveland Clinic...not only that but the same specialist who treated my fiance's wife.

The doctor wants him to do some sort of special MRI he said that can only be done at the Clinic. I don't really know what exactly is different from all the other ones he already has had. We are in the NE part of PA. He has to go through the VA so he has a lot of red tape he has to go through before the VA will pay for the tests. They did pay for him to go to the Cleveland Clinic but has to go through a lot more red tape each time he goes anywhere besides the VA.

I was wondering if anyone else had ever heard of a couple both having ALS. It just seems impossible to believe...but I am seeing it with my own eyes. The doctor from the Cleveland Clinic didn't say a thing about ever knowing of this happening to both spouses. I will keep you posted when I learn or hear anything more.

God Bless you all and thank you for your responses.

 

[crystalkk]

Bose,

I am vey interested in finding out what this special mri that can only be done at the
clinic is..... Please keep us posted and take care.

 

[BOSE]

I will let you know as soon as I hear. The DR is supposed to send a letter to his primary care DR at the VA requesting it We have not heard anything as of yet. Darn red tape.

 

[BOSE]

antioxidants

We just got a letter from Neurology. It is recommended he takes 500 mg Vit. C; 400 IU Vit E; 200 micrograms Selenium; 2 gm for 7 days of Creatine, then 5 gm; 150-300 mg Co enzyme Q-10.
He also said to drink 2-3 cups of tonic water daily because it has quinine which helps to reduce muscle cramps.

We don't know which is helping the most but something sure is...his pain and cramping have lessened.

He still has the "inner tremors" and the buzzing inside but his attitude has improved. His cramping of the hands are a lot less although he cannot eat with regular utensils and his having trouble swallowing are still there. His shoulders and hands, legs and face, stomach are atrophied but I guess that goes with the disease.

The MRI is to exclude additional possible conditions that mimic MND and ALS although the Dr says are most rare. He doesn't say what they are.

My heart goes out to all of you. MS is nothing compared to this.

God Bless You All

 

[BOSE]

I just wanted to add that the Dr. remembered his wife and his treating her for ALS. He didn't say a word about them both having ALS. I guess there wasn't much to say.

 

[fiddleplayer51]

BOSE,
Glad to know he's feeling better. Keep us posted.
Good luck!
Jane

 

[BOSE]

Dx Als

My fiancee' has officially been DX with ALS. He is having a very hard time holding his head up and is in constant pain. Does anyone know anything about a neck/head brace? What kind o f brace would be best? He has a borrowed brace from my mother but it was for neck surgery and just isn't working. Anyone have suggestions?

 

[rose]

BOSE, I'm so sorry to hear of the diagnosis. i don't have suggestions about the neck brace, but there is a threat ongoing about one on the PAL's forum page.

Good luck to you both, here's hoping for a slow progression. (hugs)

 

[sdsyd]

BOSE_

I just read your posts and I,too am shocked! I guess it HAS to be something they were exposed to? I know that there is speculative? information that states people who served in the miltary in certain areas have increased chances of getting it, as well as certain places in the world that have higher rates of it.

11 years ago my parents both contracted pancreatic cancer in the same year and died 2 and 1/2 months apart. We had there home tested by 3 different companies for radon, and they were all in the "clear". When we cleaned out their belongings we thought maybe they were closet drinkers, because we'd only seen them drink a few times and had heard that alcoholism has higher rates of pancreatic cancer. -NOTHING. Every medical profressional we ever tell this too is astounded, as pancreatic cancer is also rare.

Some things in life I guess are just unexplainable.

I don't know what to say to comfort you, but this is a great place to come for answers, support and venting. Best of luck to both of you and we'll be rooting for you.

Cindy
(Dx with Suspect MND )