Dear Cheryl and Dana, and Janet where are you?
I am worried about you Janet. Please email us and let us know how you are. I feel like all of you are my new family and I miss you Janet.
Glad you are wearing your brace Dana, with shorts! I always remember that beauty comes from within
. I felt kind of self-conscious about riding my scooter to the swimming pool, which is only 1.6 miles from my house, but I now ride on Mondays and Wednesdays each week now (sometimes Fridays) and love every minute of it. I don't care who sees me! The gardens along the way are lovely, so it is a nice ride. The scooter is actually fun. But I am not riding tomorrow because the air is bad here (smoke from all the fires), plus it is only 106 degrees out today!! (that's why I put the red face on this email!!) It takes me about 25 min. to get to the pool and I don't want to be breathing bad air for that long, let alone being too hot.
Stairs are scary Cheryl. It takes me forever to climb mine. I have to wait nearly 2 months before I get the stair lift......patience!! I hope you get lights for your stairs Cheryl!! Falling is no fun, that's for sure. The last fall I took was awful - lost my balance in my kitchen and went down hard on my floor....ouch.....just a few bruises. It's pretty hard to get back up off the floor when leg muscles are shot!! I only took one bad fall that put me in the ER - knocked myself out on the cement driveway.....smacked my forehead and had a lump the size of an egg, and a black eye....cute! My daughter wants me to get one of those medic alert things that you wear around your neck. I have a home alarm system so maybe I will call them to see how much more it would cost. I do think about falling and hurting myself and not being able to get to the phone. I try to be really careful.
Dr. Bruno emailed me today. He answered my questions about whether or not to get a lumbar puncture and muscle/nervie biopsy. He said that if my neurologist absolutely thinks I have ALS then yes, I should have those tests. Interesting, because I have been to neurologists about this for way over a year, they all say they think I have ALS, but never ordered any of these tests. Go figure.
Dr. Bruno also said that lots of PPSers have twitches everywhere
, so I guess I am just a regular, non-stop twitcher!! I am so thrilled that he takes the time to answer my emails. He said that sometimes PPSers have swallowing problems, but usually it is minor like when your food or liquid goes down the "wrong pipe" and you choke......I hate when that happens! He said that PPSers rarely have breathing problems. I asked him about the swallowing/breathing problems because I worry about it all the time because of ALS. He also said that he would be glad to communicate with my new neurologist. I wish I could meet him in person.
I am rambling on.....sorry.....boring day actually....stuck inside because it is way too hot to go out! Reading, watching TV, playing on the computer.....not too exciting.
Take care everyone,
Blessings to all of you. I pray that you are OK Janet.