wles

Since my last post my husband has finally agreed to home health services - just last week. The first visit went good-he was happy with the nurse and has agreed to two weekly visits to check in on him. Home health also set up a speech therapist to help him learn to swallow better. He is having just awful acid reflux which, with Bulbar ALS, is very frightening. He cannot cough up anything in his throat - it gets stuck - and he cannot swallow. Anyway, the speech therapist came and told him there was nothing she could do for him but was going to recommend to his physician that a tube be place in his throat so he could get rid of the reflux and excess salva. I am a bit confussed - I wasn't there but ---is this a traceostomy she is talking about?

Yes he is getting medical attencion at the veterens hospital because he is a vet and they linked agent orange to his disease. He is going to speech therapy and seeing many doctors. I do think he need to get a special bed too because at night its hard for him to not choke. Sometimes he has a hard time advicating for himslef because he dosen't want to ask for things much less accept whats really happening. I do live with my mom and dad and sister. Im 21 and my sister is 25. I do feel angry at times for whats happened my mother is a cancer survivor as well so at times I ask why me and why my family,its never easy for us and my mom and dad are the bets people in the world .Im glad I just have a place where people can relate to me and support one in other during these times,because the average person just dosen't understand the disease my father has a lot of people I tell ask what it is and never heard of it.

Phyllis, I think you have to have at least 10 0r maybe more posts before you can PM> When you are in your User profile you can scan down the column on the left till you get to Messages and it asks if you want to send a personal message - click there. Or I find it easier to go to the friends - click there and then on your picture (?) - go to contact info - click and go to PM click. Try it next time.

Did you like Dr.immons? Are you seeing Dr. Rawson for pulmonary? Will you be at clinic this month if not snowed in?

I am looking at hospice as not helping me die, but rather helping me live comfortably and with joy longer........ also as a relief for Tim, my primary caregiver.

If you need to talk - Iam PMING you with my phone number. Hang in.. Hugs, Diane

He doing all right he feels embarassed by his speech because no one can understand him he also is embarassed by the excessive drooling. He goes to the Veterens hospital every week and gets speech therapy and meets with doctors. He is still trying to get disability which is a long process. My dad also chokes in the middle of the night I dont know how much longer he can continue eating and drinking normally for. I wish there was somthing more I could do for him . How is your husband doing?

Hi wles..you said your husband sounds like my dad? My dad said he started to get twitching in his arms and legs but I do not see it yet. Now did your husband start other symptoms after the ones I described? I just don't want him to get worse really quick because thats awful .


Thanka, Victoria

How are you doing with the weather? It sounds like you got hit harder than we did down here but it snowed enough to make me get somebody to plow the driveway just in case we get more!!

Merry Christmas! and thanks for the sympathy card. It has been a rough couple of months on me.

I am beginning to regain some chips of energy and am looking forward to Tim taking me to 7PM Christmas Eve service at church. Then home for a candlelight dinner in front of the tree and who knows, maybe a gift from Santa will appear under the tree. We are celebrating Christmas on Sunday with a dinner at 4:00. Eighteen friends are doing the cooking and bringing it in for a merry day. No word about when my son and family are coming but their pkgs are under the tree.

I got the paperwork started with hospice and will start in January. I got a sleeping pill that is finally working, a new blood pressure med so I am not wetting my pants as often, an anti-depressant so I am not crying and find myself smiling again, and lastly, an antibiotic for a sinus infection that I didn't know I had. Christmas presents in the form of miracle drugs!

Hugs.

Phyllis - don't know about your part of the Hills but ours is mighty chilly today!! We went out this morning and I quickly learned a walker and snow do not mix!! Thank goodness Tim was there to help me thru the piled snow and I didn't fall but sure was tricky. Think I might have to search the forum for snow tires or chains for the walker before I go out too far. Happy Thanksgiving - the fried bird sounds yummy.

Phyllis,

Just read your post and wanted to see if you will be at clinic this month. My appointment is at 9:30 and if you are going to be in that morning, maybe we can meeT in person!!

hey phyllis - praying for you and your husband. this is an awful disease...i avoided the reality of it until my final dx. please keep us updated on bill. blessings!

Good Morning Phyllis

My heart goes out to you and your husband. I have done the same thing you have been doing - trying to find out everything I can. My husband was in denial about his diagnosis until just a couple months ago. That was SO HARD! But, everyone has their own way of dealing with things. I know what you mean about the feeling that it is so unreal. I accepted the fact that he had the disease but just this week, on my way to work, I realized Malcolm and I will never have the lively discussions we have had with each other since we met; I think that is what I miss the most ---his deep sense of humor and heated discussions about everything from religion to science to art. This disease makes me feel like it has robbed me of my best friend---I know he is still in there---he just can't get out.

Hi Diane, we are retired and on Social Security..but thanks for the advise. We have an appointment with Dr. S in November so probably won't get to the Nov clinic as the way I understand he (the Dr)has to evaluated hubby before he can be admitted to the clinic. Will keep in touch so that if we ever are scheduled for the same day we can meet face to face..that would be great. Somehow it helps to know others are facing this too. I wish hubby (his name is Bill) would read this forum as there is so much to learn. So far he doesn't want to know much. Take care. Phyllis

Phyllis, so good to know you have a definite diagnosis but wish it was not this demon of ALS. I am skipping clinic this month and will go again in November so please let me know if you will be there and perhaps we can meet face-to-face.

I don't remember if your husband is retired and on social security or not -- if not you may want to apply for SSDI now. With an ALS diagnosis he is automatically eligble and it will cover 80% of medical expenses and equipment needs that you will eventually need.

I have Tri-Care insurance as my secondary and it covers my meds and generally pays the 20% that Medicare doesn't cover. At least - so far!
Good luck and if you want to talk I'm here. Diane

Most certainly you can call me "Diane". I'm so glad you found our forum, but sorry you had too!

I'll be glad to share my experiences and provide you with whatever info I have, My local neurologist, local being Rapid City, is Dr. Matt Simmons, at Black Hills Neurology, across from Rapid City Regional's Rehab hospital on 6th (?) St. He is also the physician who is at the MDA/ALS clinic monthly.

In fact I had a clinic appointment today and he gave me a Rx for a clavical support brace since the muscles that hold my shoulders back are weakening and I find myself hunched over and off balance. I really like him and he takes a lot of time with me making sure all my needs are met, but he doesn't candy coat what I face either!

I am now one of those people in WalMart and Sam's Club that ride in a scooter basket and run everyone over!

I will send you a friend request and stay in touch with you, Phyllis.