PALS chat thread ( PALS only please)

[KarenNWendyn]

My ALS symptoms came on within a year after I retired. Colossal suck!

 

[lisa g]

Yep Karen I'd say you got the colossal suck! I had 3 years before symptoms.
Last Christmas I wanted give personal gifts out so I crocheted blankets for my 2 daughters, son-in-laws and 4 grandchildren. My husband got 2. Glad I got those done before symptoms. Now the dilemma, after 13 years my youngest gave us another grandson so now I want to get another blanket done before I start having any issues with my hands and arms. I'll have to get motivated.

 

[Signe]

I'm also glad that I've done so many things like travel. My husband is 11 years older and I knew with his health issues we'd better go when we could. So we have taken many trips already. I guess I don't have much to complain about. But I wish I could do more. My dream has been to go to Macu Picu and see the Nazcar lines and Lake Titicaca but the altitude there will affect my breathing and it won't happen. But still I've seen a lot. I'm still working a bit, but I'm self employed so I don't think that I'll really retire.

 

[Signe]

Well I survived my day at the ALS clinic in Rochester. First time there, it wasn't quite what I expected but it wasn't too bad. I signed up for a research project they are doing and had a mega blood draw. Next time they will do a spinal tap as well. I got the results of my genetic tests back so far everything has been negative which makes me really happy, as I was so worried about my kids. I know there are still unknown gene potentials issues but nothing yet on about 7 genes they tested. They will still test for more now if the insurance company will pay for it or if I pay out of pocket.
I asked them about driving and they felt that I was still able to. But they cautioned me about being too tired and to avoid driving when I felt fatigued or in a strange location and to use good judgment etc. We talked about the g-tube and next visit they will do pulmonary function tests and we'll talk about after that. I'm bulbar onset so my breathing and eating are my worst issues. Pulmonary function is down a bit but not bad right now compared to the one I had a year ago. They also offered a boogie board but I don't have it yet. I talk sort of very slow and low but my harmony is good so mostly I can be understood they said. I think that is all I have to report. Weight is the same, and no falls so I'm in good shape that way. And I'm packed for my trip to Paris, leaving on Friday! Getting a bit nervous about that but it will be fun. Take care thanks and I pray everyone is well on here.

 

[KarenNWendyn]

Enjoy your trip to Paris. Hope the Euro heat wave breaks up in time for you.

 

[nona]

Sounds like a thorough clinic appointment Signe! The boogie board is really easy and helpful. Have a great time in Paris!

I'm recovering from a family reunion last weekend. We met a half sister we never knew about ( my father didn't either). She found us through 23 and me just before her 60th birthday.

 

[KarenNWendyn]

What is the Boogie Board?

 

[Signe]

It's a communication device.

 

[KimT]

This is a boogie board where I live

 

[beauty4everyone]

Salutations! Greetings! Hello! & HI!! A special thank you to those who are concerned about me and missed me. You’re so very kind! I missed you, too!!

The site change locked me out. Even tried opening a new account. Nothing I tried worked. Contact for help didn’t have a question in the box. Besides, it assumes your acct. works. Of course, No Phone Number. After two weeks I gave up. It was too upsetting. It’s one thing to choose not to participate, another to be locked out with no way to fix it! Reminded me of painful events from my youth.

HOWEVER, I decided to try again. Ta Da! Someone fixed it! I don’t know when, but it works now! So, I’ll put all that behind me and move forward, “Westward Ho the wagons”.
While I was in “web stasis” the world moved on. I have lots to catch up on. The forum “games” site was fun to read.
One of my photographs is currently in a local art show. It’s one of my favorites. One has to look closely to see them. It was fun to make.

Have a good day. I’ll write again soon. Need to work on cross stitch while husband naps. Hugs to all and Thanks again!
May Blessings abound. B.


Wolves of Autumn (All Rights Reserved) Photomorphic Photograph

 

[KarenNWendyn]

Beautiful photo. So glad you’re back!

 

[beauty4everyone]

Thank you, Karen - It's good to be back! I'll be hanging around! B.

 

[KarenNWendyn]

Love the flying fox!

 

[KimT]

B,
Glad to see you back on the forum.

 

[Signe]

I'm here, can't believe I am doing this. Its been tiring but worth it.