PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

I've enjoyed three days straight of floating in the pool and socializing with my neighbors. Only about 40% of condo owners here stay in the Summer. They go up North, to Canada, or other cooler parts of the country. Yesterday I was in the pool all alone. It was wonderful but I did enjoy the people who came in after I had been there for awhile. I usually go out at 2:30 and stay an hour, moving constantly using my noodle. I miss walking the beach but I'm not that steady and I can't walk far enough to get any benefit. I still do the treadmill a couple of times a week. Only 1/4 mile but it makes me feel like I did something.

The sun makes me sleepy in a good way. It's too late to take a nap so maybe tomorrow I'll hit the pool earlier, then have a nap.
 
Nona, the Sox are on a roll a coaster this year. They just can seem to put it together. I know that there are still 80 games to go, but losing today was a gut punch after the come back in the bottom of the 8th.

Otherwise, we are ops normal in the Heartland.
 
Just got back home to Florida after a wonderful but exhausting trip to visit my family in the Boston area. Finally had the opportunity to take my Floridian wife to a Sox game at Fenway. Spent the entire weekend with my 3 siblings and my 85 year old mother and really hated to see the trip end.
 
Nona, the Sox are on a roll a coaster this year. They just can seem to put it together. I know that there are still 80 games to go, but losing today was a gut punch after the come back in the bottom of the 8th.

Otherwise, we are ops normal in the Heartland.
A Sox fan in Kansas?
 
I am a transplant. I was born in Boston and grew up in Natick. My Dad was from Dorchester and my Mom was from Provincetown, so you can say I was 'born into it.'

My first Sox game was in 1954. My first Celtics game and first Bruins game a year later. My Dad had season tickets to the Sox night games in 1960, Ted's last year. What a thrill that was to watch a legend play his last games. Went to my first Pats game when they were still the Boston Patriots.
 
June has been a hectic and exhausting month, but we are now moved into our new one floor, no steps, condo! :D:D

We moved Sunday. There are still boxes stacked in the garage, but for the most part, the house is unpacked and functional. It took me until Tuesday to find the box with my deodorant! We have workers turning an attic storage room into a "den" for our college son who needs his own place to study or just hang out. His bathroom still needs a shower installed (only has a tub), but it shouldn't be too much longer.

Our house still hasn't sold. :( We resigned a contract with our realtor and lowered the price again. We still need to have it cleaned, move a few items that didn't fit in the mover's trucks, and hire a carpet cleaning service.

I had my Clinic visit yesterday. Doctor agreed I have more weakness in legs and shoulders/arms. PWC paperwork and assessment is now all complete. It shouldn't be long. He wants me to see OT for hand braces to keep my fingers straight.

BIPAP finally arrives this morning. We needed to put it off a week due to the move. This has been a seriously long wait!!! (Started the process after last clinic visit in April.)

I finally got a rollator. It has helped immensely with people packing and unpacking for me. I'm going to try using it to walk down to the mailbox. We have a central location for mailboxes a little less than a hundred yards away.

Now that I have internet and am settled, I plan to get caught up with everyone! It is hot and summery in Ohio finally-88 today!

Cathy
 
Congratulations on the move. Good luck with the house. I also moved before selling. It worked out ok. Hope it does for you
 
Another Wednesday already? 😳 It's been a hectic couple of days. Last Thursday I went to Cleveland Clinic for a second opinion with a neuro specialist. She would neither confirm or discount the previous diagnosis given by another neurologist. She felt they reached the diagnosis too quickly and wants more tests done. She said while yes I was exhibiting some symptoms of ALS I was also showing symptoms that were inconsistent with the disease. I was able to walk on tiptoes and heels. I also have had some problems swallowing which have greatly improved since taking Riluzole. She said Riluzole would slow progression not make symptoms disappear. She also felt that the swallowing would not be from ALS since I have had that issue since 2012 and had 2 endoscopes to stretch my esophagus one in 2013 and one in 2016. She said that I would have progressed much more in that amount of time. The other neurologist didn't seemed concerned when I told him how long I had that issue.
She was also confused why a Thoracic Spine and Cervical Spine MRI was never ordered. She told me not to think that she was telling me that I was misdiagnosed since ALS was still on the table but she wanted to see more tests done.
Today she sent me for Bloodwork -motor neuropathy profile complete. Next week the MRI is scheduled and than the 1st week of August another EMG. She also wants me to continue taking the Riluzole
Not hoping for a miracle just want a firm diagnosis one way or the other.
So how was everyonse else's week?
 
I was exhibiting some symptoms of ALS I was also showing symptoms that were inconsistent with the disease. I was able to walk on tiptoes and heels.
Lisa, I can still walk on tiptoes (not well) and just recently lost the ability to walk on heels.
I never heard of this....Anyone else?

I am glad to hear they want to do their own tests-although I am sure you hate the idea of all those tests again!

Keep us informed!:)
Cathy
 
I can still walk on toes and heels. It's much harder but I can do it. Sometimes, when I first get out of bed, I can't do it. Then, later in the day I can. Go figure.

I also think it's a very good idea to re-test.
 
Toe and heel walking were the first things I lost. AFOs kept me walking for quite a while. Now it’s pwc outside the house and I can still use a walker in the house but can’t stand more than a few minutes. You toe and heel gals — enjoy it while ya can.

Got G tube this week! Recovery is slow but fortunately pain is lessening 2 days out. Tube feeding is simpler than I thought and it feels so good to get fed and hydrated without worrying about choking. Looking forward to seeing season 3 of Stranger Things on Netflix.
 
I think what doctor was trying to gauge was muscle weakness with walking on tiptoes and heels. I'm definitely not looking forward to redoing tests again but you have to do what you have to do. Like I said I'm not expecting to get a different diagnosis in the end, I just want the first diagnosis verified.

Hope everyone enjoys 4th of July

Karen, glad to hear your on the mend
 
Happy Fourth everyone! Sunny and warm here 😀.

Happy in my “ new” ( almost a year) home and finding life lots easier because of that and because I am actively seeking alternate ways to do things and saving energy for the important things.
 
May you all enjoy the blessings of liberty on this Independence Day! 🇺🇲

In the words of our forefathers:

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness."


Cathy
 
Back
Top