After two years of battling this terrible disease James passed away.  He took such comfort in his family and friends.  We appreciate all the love and support he received at  Thank you for taking the time to follow his blog.  It meant so much to him.  He knew there were many people who cared and that was awesome!! We will all miss him so much.
Today was mediation….everyone acted like gentlemen and we resolved our issues.  I am happy that this is over!!!
Peggy got turned down for health insurance because her medications are too expensive.  I pay $850 a month for my health insurance and it has no prescription benefit. 

I fell like great  - not getting any worse.  I believe chelation has a lot to do with it.  Unfortunately I can’t chelate this week because my veins are being fussy – when they find one it just blows.  Better luck next week.  After 5 years I am getting to meet my neighbors.  I enjoy riding thru the development.

Big road trip next weekend to Rochester for the Keefer Clambake.  Looking forward to seeing everyone!!!  I’m sure the Scooby Van will be up to the trip!
Last week was a fun week!  I fell in the bathroom and had to have Tommy come over and help Peggy pick me up.  Peggy had to help me off the toilet a few times and even washed my hair in the kitchen sink.  Piece by piece I am loosing function.  My mind is still the same (don’t know if that is good or bad). 

Still love my wheelchair, van and visiting with everyone, especially Avery & Jeffery.  They are such joys!!!
Between flomax and the bi-pap I get up only 1 time a night now.  Last night I slept 8 hours straight!!  Since I am sleeping better I am not napping as much – no nap the last 2 days.  My voice is much better but my strength has not come back.  I need to find more things to do during the day – I’m driving Peggy crazy!

Mary Ann’s birthday is today and Jimmy’s is tomorrow – busy weekend!
I am sleeping much better!  Last night I only woke up once!!!  My breathing is another story and it gets more difficult as the day goes on.  Getting more difficult to transfer myself from the wheelchair to anywhere.  I have a nurse coming out next week to discuss home care and the ALS association is sending a person to discuss what they can do.

My company refuses to provide me with health insurance so until that is settled I will have to get a policy for me and Peg - $1,500 a month!  We are going to do mediation first to see what we can work out.  
The van is actually very nice – I’ll post a few pictures.  Drove back great – put new brakes on and will have the shocks checked.  Peggy calls it the Scooby Van. 

I continue to lose strength and standing, getting out of a chair, bathing – well just about everything is very difficult.  Going to check into a nurse coming to the house X hours a week.  The kids have been great visiting all the time and Peggy will not leave me home by myself.  I never thought when I was diagnosed that ALS would move this quickly.




Got my wheelchair yesterday!!!  It was so nice to get out and ride thru the neighborhood.  It’s really like the commercial says – it gives you your freedom.  Peggy and I fly to Chicago tomorrow to pick up our handicap van and will stay overnight so Peggy can check out the “Magnificent Mile”.  The van is a 1995 so I don’t expect to impress the neighbors.

My CO2 blood levels continue to rise which is why I am so tired all the time.

I stop breathing once every minute while sleeping so my BiPAP settings will get adjusted.

Another sleep study ordered to see is I need oxygen in addition to the BiPAP.

My bosses still have not filled out my disability paperwork, paid my bonus and think they do not have to provide health insurance to me.

Got approved for Social Security Disability Insurance in 2 weeks!  Start getting payments and Medicare 1/10!  Found out yesterday I do not have prostate cancer – all tests and scans showed no pre-cancer cells!  Leaving for Martha’s Vineyard tomorrow for a week of R&R with Peggy’s brothers & sisters.

I took my bosses suggestion of having an attorney review the separation agreement they want me to sign.  Best move I could have made – now the attorney will handle this and I can have less stress.  Every step of the way through this illness they have screwed me and did not keep any promises.  I wish they could just do the right thing!


My bosses are holding my bonus owed as “hostage” because they want me to sign a separation agreement that is so one sided it is comical.  American Greetings would do the same but offer you 2 years salary to sign it.  They also are not filling out my disability paperwork becasue they need to make sure their answers are accurate?  The form takes 15 minutes to fill out - I just don't understand.  They have had it a week and are going on vacation the next 2 weeks so who knows when it will get filled out.  I only hope they do the right thing.

My mom, Jean and John have all visited over the last 2 weeks.  The end of the month we go to Martha’s Vineyard with Peggy’s family.  It’s very nice being around everyone!  Avery Margaret was in the hospital for a week due to fluid getting into her lungs.  After a week and many doctors they still don’t know what is causing it.  You never know what life is going to throw at you…..

I continue to lose strength everywhere and now my neck is getting heavy.  Overall I do feel better and think the chelation is doing the trick.  Thanks for everyone’s comments! enjoy reading them!!!

    Princess Avery
    Avery Margaret

    Even Jeffrey III says Papa will get better real quick!