Calling all PALS! ( PALS only please, thank you)

[ShiftKicker]

It was my 17th wedding anniversary yesterday and I completely forgot about it. I felt TERRIBLE. I'm usually the one that remembers and has to reassure my husband forgetting is fine. This year he got me back. We went for a lovely drive to a small waterfalls in the hills a few hours away from our house and both agreed they were much better the last time we went when it was raining and no other people were there. Deep down inside we're both misanthropic jerks, and our agreement about other people ruining "our" park reminded us of why we're so good together. It was a great day, aside from my guilt for being a terrible forgetful wife.

 

[wshealey]

Thanks for starting this thread Nikki. It's great to read what everyone is doing. We have a busy summer full of travel planned. My son and his fraternity did a fundraising campaign to help us fulfill a lifelong dream of visiting as many Major League Baseball parks as I can. We started our journey last week, flying to DC and attending a Baltimore-Detroit game on Thursday and a Washington-Miami game on Friday. It was a fun three-day trip, jam-packed with sightseeing, baseball and good quality time with my son. I was pretty wiped out when we returned and took a couple of days to recuperate but it was so worth it. We have three other trips planned at this time with 12 parks on the itinerary. I also started a blog last week to document our travels called livelifelikea3-1count.weebly.com. Baseball has always been an important part of our lives and I can't think of a better way to spend time creating memories for my son to take with him long after I'm gone. Next up for the baseball journey is San Fran and Oakland in June. Can't wait.

 

[Margesmn]

Thanks for getting us started Nikki! It was nice to read what everyone has been up to.

I just returned from a weekend retreat with some friends. I am so fortunate to have friends who are willing to do whatever it takes so I can do these things. We had a nice weekend away with a lot of great laughs. And my husband go two nights of uninterrupted sleep. I have outings with friends and former co-workers this week that I am looking forward to.

Things continue to change for me. Some days I think it's going slowly and other days I think things are changing quickly. My hands are becoming more involved. They are shaky when I am eating and getting weaker. I am using a manual chair full time now. I have my wheelchair assessment on Friday. Hoping to get a loner PWC until mine is ready. I also have a sleep study this week to see if a bipap is needed.

Wishing all of you good weeks ahead.
Margaret

 

[Mlock]

Struggling to get over blood clots. Have to have someone with me all the time!

 

[Laraliu]

Hi All,
I'm new to the forum, diagnosed Spring 2015, after a year of tests, doctors and a diagnosis I hadn't even imagined. Nine months later with progression my doctors call slow and I call alarming, here I am. I am a 49 year old married woman without children. If your interested in the tiny details I started a blog, titled "Lara's tale." It only has 1 part but someday I may write more.

So far this is my 3rd entry. Started with the blog, commented on an AFO/shoe issue, and this.

I need a community, a place where I can talk about this thing called "ALS" and where I can feel comfortable. That's why I responded to the roll call. I may not pipe up often, but I'm here, reading and learning and praying, for what it's worth.

It's been a busy month and a great week! I am in the process of testing to be included in the third phase of a clinical drug trial of "trimesu" with the Stanford Neurology Clinic. I will report more on my inclusion or exclusion in that study as the process moves forward.

On a more personal note, I have finally become transparent with family and friends regarding having ALS, and its toll on my physical being. I am overwhelmed by the love, acceptance and strength of family and friends.

So thank you Nikki, for the roll call, the messages and the support. I'm responding, "Here".

 

[Laraliu]

btw- "trimesu" is my hubby and I's code name for the drug trial, Tirasemtiv.

 

[Nikki J]

Thanks everyone for sharing. Laraliu welcome and thanks for starting to chime in.

I am back home after a research visit in Florida. All went well. I want to let everyone know ( again) that there are wonderful and brilliant people fighting to find answers for us. I know it is hard to believe sometimes because they don't have results that they can use for us now but they are trying and learning every day.

Please keep this thread going! If you want to talk about ALS that is fine but if you just want to share your day or week ( an activity, family news) that is terrific too or just that you are doing as ok as can be.
And to clarify again this is for PALS in the larger sense of those dealing with a diagnosis of MND
Thanks

 

[KimT]

I've been clearing things out of my condo. My friend is having an "estate" sale and I'm taking some of my things over there to sell. I keep a very minimalist place but I have stuff (mostly entertaining dining and food prep) that I'll never use and need to clear out space. I also got rid of 90% of my books and other miscellaneous "stuff" that just get in the way.

It's raining like crazy here and will be through Saturday. Fortunately, the sale is indoors. I'm already tired and we've not yet started.

 

[swalker]

We are still in Yellowstone having a great, but rainy day. I am doing well and enjoying all that Yellowstone has to offer. Giving my wheelchairs a good workout, which is always good.

Steve

 

[chally]

Hey Steve, have ya checked out the Artial in National Geo.

 

[patrick123]

Still rockin and rollin

 

[KimT]

We are still in Yellowstone having a great, but rainy day. I am doing well and enjoying all that Yellowstone has to offer. Giving my wheelchairs a good workout, which is always good.

Steve

Steve, your trip sounds wonderful. Roll on!!!!!

 

[Janbrit]

I have just got back after a week on the beach in Furteventura soaking up the sun. I have also just booked another week there in September, so set myself another milestone to reach. Got to keep going until then, eldest son's wedding at end of July and other son's wife having another baby in August. Thats three goals to keep to and hopefully my skinny legs will keep me upright!

 

[Nikki J]

Jan great to hear from you. You have been missed! Glad you got some sun, even better you have great things to look forward to. Keep us posted!

 

[azgirl]

So happy to read about all of you out there traveling, and glad I did it a lot during the past 2 1/2 years. Afraid my traveling days are over, as bathroom and sleep complications would be so difficult.

Yesterday, I planned a surprise birthday party for my caregiver. He is wonderful and has become part of the family. He is from Kenya and has never had a birthday party. It felt good to do something special for someone else, since they all spent so much time looking after me.