I know….it’s been a while!  Got measured for an electric wheelchair, nebulizer to help my breathing, CT scan for my prostate, sleep study on the 7th, blood in urine, hand shaking more, walking sucks, not sleeping well…..now you know why I have not updated in a while.

Good news!!!  Filed for disability on Friday!!!  Saw Jimmy’s band which was great!!!  Mary Ann & Jeff took me and Peggy to the Indians game yesterday for the 70th anniversary of Lou Gehrig's speech!!!  Peggy’s mom and sister visited last week.  Mark, Kim and the girls visited last week also.  This week my mom and sister come and Jerri Ann will be here all week.

Started chelating 2 times a week and praying that it does the trick again!!!!

 

 

 

 

I continue to lose strength and walking is getting more difficult even with the walker.  The only time I have showed improvement was while chelating so I am going back to chelating 1 time every week.  I spoke with Dr. Hickey about it and he feels it will be a help.  Time will tell! 

I had PT yesterday and after 10 minutes in the pool I was totally wiped.  They had to use a chair lift to get me out of the pool.  My legs are so weak…

Mary Ann & Jeff had their second child, Avery Margaret Maslar yesterday morning at 1am.  6lbs 2oz,    18 ½ inches.  Black hair and a cutie!!!  Everyone is doing well and are already home. 

Got my vest today that will help with keeping my airways clear.  I needed it 6 months ago when I was sick and having problems coughing and getting mucus up.  It still has not even been approved by Kaiser but the vest company sent it out anyway at a cost to someone of $14,000!

I miss the flatness of FL.  A lot of stairs in OH, 3 to get in the house, 3 to go out on the patio.  Went to PT today and got evaluated and now have to wait for Kaiser to approve. 

Our home is for sale!  If you know of anyone looking to mover to Aurora, OH send them here: http://www.realtor.com/realestateandhomes-detail/205-Brighton-Dr_Aurora_OH_44202_1109225102#Request

We are also selling our rental property in Kent, OH.  It's a money maker: http://www.realtor.com/realestateandhomes-detail/540-Perry-St_Kent_OH_44240_1108801798

 

It’s been a while and we are home for the summer!  I have not had to take a nap in a week and I think it’s because I stopped taking creatine.  Maybe the laser helped with my breathing – whatever it is I’m happy about it.  Since I can’t go upstairs anymore we listed our home and need to get into a ranch.  The way the market is it could take a while.  Maybe Obama will bail me out!  Next week I find out if I am a candidate for the diaphragm pacer.  I have an appointment with Dr. Onders who developed it.  The trials he was conducting are over and if I am a candidate we will have to get approval from the FDA.  I hope everything work out well so I can breathe normally again.

It’s been a while!  No news is good news.  Nothing has changed – a very uneventful 3 weeks.  The laser has temporary results and I will be transitioning the IV treatments to oral when I return home next week.  I have an appointment with Dr. Onders (developed the diaphragm pacer) in mid-May to see if the pacer can help with my breathing.  I continue to be in good spirits and look forward to seeing the kids!!!

It’s going to be a busy summer..Mary Ann is due June 7th and Jimmy’s band is on tour promoting their 1st CD http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=373877556

Here is an update on my progression basically after 1 year.  I am using a walker to get around because my back and left foot are so weak it is difficult and painful to walk without help.  I need to wear my AFO on my left leg to keep my foot from dropping and making me fall.  I have lost fine motor skills in both hands and it is difficult for me to put my supplements into my pill box.  I have to sit when I shower, brush my teeth – basically when I do anything because I fatigue easily.

On the positive side my mind is fine and I feel I have a very positive attitude.  I so much enjoy seeing the kids and my grandson; they are all amazing.  Its difficult being in FL and away from them but my mom and sister are there and I see them often.  And of course Peggy is amazing - she takes such good care of me!  I am very lucky that she talked to me at that bar in Oswego some 30 years ago!!!

The chelation has definitely slowed the progression and I hate to think where I would be if I did not do it.  It’s hard to tell if the supplements and drugs are doing anything.  Every doctor wants you to take something different – I think I may start to weed some out.

Good to be home with the kids!  It’s cold here so no sitting outside…I’ll be able to do that when we go back to FL next week.  Got home on Wednesday and fell that night in the bedroom.  My ankle turned over and I hit my head into the wall.  Other than that I feel great!!!  It’s nice taking a rest from going to the doctors all the time.

Getting ready to go home for Easter and see the kids and friends!!!  I am doing well and the laser is definitely helping.  I have more strength in my left leg, my back and knee are pain free but my left foot is still extremely weak.  Still using the walker but not 100% dependent on it.  Started taking lithium a few weeks ago as more research says it can protect the cells.  Side effects have been dizziness and hand shaking.  The best “drug” has been the sunshine!  It’s amazing how being in the sun everyday makes you feel.  I am hoping that the clouds have left Cleveland for the winter…..

Finally got my computer back – the hard drive crashed and had to have it replaced!  Got a call from my boss last Friday telling me he was cutting my salary in ½ again, what a guy!  2 laser treatments so far with 2 next week so I am hoping to see improvement.  Got my metal tests back and everything looks great!!!  I only need to chelate 2 times a month for maintenance.

Looking forward to going home for Easter.  Will come back to FL after a few weeks to resume the laser and IV therapy.  I’m felling good!!!