long time no post. things are good. still leveled out since dr. jernigans visit in august. still moving my fingers , toes, got a little better head control. guess what ? i got kicked off of hospice care for not dying on schedule......lol. medicare was pushing me off this care because i'm improving. you would think that they would be more intested in why someone diagnoised with ALS is getting better. nancy and nate are taking too good of care of me, so they don't think i'm in need of any additonal care giving. too bad we can't get caregivers pay in ohio since my son is giving up his life right now to care for me. hope you all are well and i will have my family post more often to update you all. jon : )
Hi Jon, it is great to see you posting! I am thrilled that you are improving!
Are you still treating?
Getting kicked out of hospice is reason to celebrate! It is wonderful that you have such a caring and supportive family. I do not think your son sees caring for you as giving up his life. People are what matter most in our lives.
What wonderful news! So glad you are improving and posting again. Being "kicked out" of hospice is indeed reason to celebrate. It's great that you have supportive family, you must have been a very good father to your son. Take care.
hi jon. i'm new to the board but i am so glad you are improving .that's great news . i have abrother-in-law with latestage als . he has lost most of all his movment . they have always believed it was lyme but all test come back neg . he was a big hunter ,in the woods most every day . he loved to turkey hunt most of all but he loves deer hunting too . he is a great guy .i got him an igenics test last week . they have been decussing whether or not to even bother with it . they had hear from als that the test was a hoax not worth their time . that it always comes back possitive and was not accurate.i had the igenics and was finally diag. after 17yrs . im in tn they are in miss . drs dont believe that lyme could do this to him . when i saw your post i believed it was a gift from God . to encorage them and maybe to send them in the right direction. your post is an inspiration to us all . may you find many blessed days ahead and regain much strength moment by moment . thanks deb ps with what treatment are you seeing so much improvment ?
Last edited by silentstones; 04-21-2007 at 06:23 PM.
That is reason for all of us to celebrate. I needed to hear something positive. Glad you posted and have such encouraging news. Sounds like you are indeed blessed with such a caring family. Shows how much you are loved.
Hi, Jon! It was so good to see your post and the mixed decision on Hospice although with the limited time period they have, I'm very happy that they had turned you down, but wish you could get the okay for your family to get compensation for caretaking..you're right. My aunt and father in-law also had ALS and though my father in-law had his daughter (an R.N.) to help significantly (they each lived at opposite ends of the country and fortunately she had a cooperative husband with her being away) and my husband helped by handling the non-care parts he was very fortunate. My uncle was a salesperson who worked till the day he died of a heart attack, but received very little financial consideration in the care of his wife with ALS, who spent much time in the hospital, so we had both extremes...
As it was said, your son sounds like a wonderful person to give his time and energy to your care, and I applaud his strength to thoughtfully give this gesture of love to you....and for you to receive this gift is a blessing.
Going through the debilitating period of this disease can discourage even the strongest will. When I was first bedfast I didn't think I wanted to live anymore and I've known several others who did not survive. I remember three times impeticular when I was unable to breath on my own and the emergency room doctors wanted to "make me more comfortable" by shooting me up with moriphine which my wife knew that would have finished me off by causing resperatory failure.
Do not wait to long before getting a feeding tube, trach, and vent if needed. These are great tools to help recover and make progress as I am doing now which is unheard of with people with "ALS". Many may not wish to live in this debilitating state and that is a matter of personal choice. I however am glad I made the decisions because of the positive reactions I am getting from my body.
Jon: My heart and prayers go out to you and I thank you for the energy you give to come to this board and keep in touch with your "oldie" friends who have cared about you and to give your valuable advice to the "newbies" who are struggling.
You remain an inspiration to those of us who know what you've been going through, and we are so thankful for knowing and having you in our lives.
I hope you'll be keeping in touch for a long and productive time!
Thanks jon, for having the strength to post such wisdom.
I'm at a point where I want to give up the fight. 2 years, just me, working full time, managing a home and 2 teenagers and all the medical bills on my own.
My 'friends' and family have avoided me. I guess it's human nature but I go days without contact with outside world.
I feel like I'm floating or sinking in this strange pool all alone. It's very surreal.
The massive amounts of antibiotics I've taken have helped I guess. My brain fog has gotten better.
But do I feel alive? no
Do I feel connected to the natural world? no
Do I feel the presence of God in my life? no
Do I feel the will to continue? sadly, no. not like this.
I feel less than a shell of whom I was. I don't know who or what I am, but it's no where close to what I was 2 short years ago.
I don't mean to bring down the tone of your post. I guess I'm reaching for straws. Also, I am humbled to think that this disease could wreak such havoc on seemingly normal healthy robust humans.
I appreciate that I came to know you. You are an inspiration. To see how far down you went, then to come back up and post your story here ... well ... if there was a medal for human endurance, I would nominate you.
You are so blessed to have your family around you. My family avoids me and that certainly doesn't make me feel warm or fuzzy.
May God bless and keep you and your family. You are a lucky man although you may not feel like one.
I'm so sorry to see that you're in such a low place...I totally relate to the loss of "self" because of this disease.
No one understands what havoc it wreaks and I've been "dislocated" from my friends too, who were my greatest support all my life, most of them in the medical field, but they don't understand the intricate power of the effects of the disease, and I've been pretty well housebound for 16+ years and relatively non-functioning, especially considering how capable I was until then.
I give you so much credit for managing what you do...think of it! Holding down a job, living with the responsibility of teenagers - that's amazing, really! Even if you don't do it as well as you would have done before the damage, you are doing it. Don't give up and maybe you'll be able to figure out ways to get the small things done that give us hope...
Can you talk to your kids about your illness and try to explain how frustrating and demoralizing this is to you? It's so important that they become familiar with the problems and hopes and it's hopefully not as overwhelming to them as it may be to a teen...
Hugz & hope going out to you! We're here for you...
dear ohio hunter . iam so glad you are making improvments. that is so exciting to us of all . i admiror your strong will . my brother also has a great will to get through this but has been fighting for so long that i'm affraid he is losing hope . he really is amazing. just recent he had pnemonis .was on rocephen iv and got over it . i think that kinda knocked the wind out of both his wife and him . very hard to come back from that , as you well know. i am communicating for them because they just can't right now . i am hoping soon they will be able to talk with you . they have been to so many drs. that have done nothing but discourage them about lyme from the beganning. you know the story i'm sure. most recent was nero who told them igenics was a hoaz. he and his wife knows its llyme and llyme has caused als. there is not strenght enough left to fight with the docs muchless recovery. their going nowhere fast. he can not travel at all right now . it's hard just going into the yard.any suggestions on getting to a lld. i think they have decided to go on and do the igenics.just spoke to her. i told her to tell the doc to do it .not give his oppinion.she has to have a doc to give the order and i dont know if they will even do that. it is to stressfull to go to another doc. they have had two other test done . i think it was an elisa. . it was >.14 normal is >.18 . we don't understand what that means . it seems to me that if there is any amount of antibodies there than it's a possitive. thank so much for your reply and you inspiration to all of us. blessings , deb. sorry i got so long winded,.
Last edited by silentstones; 04-24-2007 at 02:23 PM.
I was going to just scan a few messages having been gone for so long there is no way to catch up with the last 10 months but first I saw Mickie's thread and then yours.
I was so blown away by what you had to write but not in the least bit surprised. Thank God you have Nancy as your voice when you were to weak to speak. She's an incredible woman but I don't think I have to tell you that.
I am still hanging in there and doing the Healing Lyme protocol for the last 1 1/2 months. I actually feel I had my first "real" herx a few weeks ago. I have felt in the past how do you tell crappy from crappier but I think now I know. My daughter has a friend who is well now but battled lyme for years. He had to give up being a pilot in the Air Force because he felt so bad. He even went to the Mayo clinic and they told him it was all in his head. Yeah right. They told him to see a psychologist - his mother is a psychologist!
Anyway he told Rhonda that for over a year he had 3 days a month that he literally felt like he was dying and didn't care if he did. I had this "experience" a few weeks ago after going on andrographis for 3 - 4 weeks and now know what he meant. The true test will be if it happens again at the same time next month. I even had a mark on my forehead kinda like a brushburn/broken blister and wonder if something was trying to "get out". This would be great. I don't like the feeling but knw it is part of the process.
I find it interesting about the pneumonia too. If you remember correctly last year I was hospitalized for 2 weeks with pneumonia. Other than the fever and weakness you could have fooled me because I had no congestion. I have had numerous x-rays and cat scans of my lungs since and each time the previous problem has cleared up but a new one has emerged. Still no symptoms. I know Dr. Jernigan talks about mucus and I wonder if what they see each time isn't pneumonia but bacteria that keeps migrating. When I got sick a few weeks ago with the herx I had more congestion than when I went to the hospital but it went away when the herx abated. I find this all very interesting.
I am so glad Nate is helping you so much. I am sorely disappointed in my daughters help or what you might call lack thereof. They both live close and have never even offered to vacuum or dust. Needless to say my once pristine house has cobwebs that are plying dot to dot all over my house. That's okay it will give me something to do when I get better. I don't even press the issue with Ronnie because he is shouldering so much right now anyway. He has had to become a 67 year old "housewife" along with everything else. So the dust is now a part of the house.
I did enjoy a 2 week visit from my Air Force son Brent. He has been relocated from Alaska to New Mexico so we will see him more often because he's about 10 hours away. His visit was great and I think he was taken aback at my weight loss and lack of mobility. I like you though have gained about 15 lbs since the hospital stay last year. That's a good sign. He wanted to make me breakfast and anything else he could do. I swear we did more for the girls than we did for him and yet he's the thoughtful one. We did plenty with him but he just didn't think he had to be involved in every school activity available. I guess maybe we created the two princesses by doing too much. Live and learn!
As I told Mickie I don't know how much I'll visit but I just wanted to say how pleased I am at your progress and I will continue to pray for you. It does work!