Just J

How are you today? I love your kitty!

Thanks Jennifer, thanks Diane. I am counting down the days to Mike's appointment!!

Hi Judie! Good luck with your appointment at Hopkins. I am going for a clinic appointment tomorrow. The staff there are super and will take great care of you and your husband. They are great about answering questions and just listening. We love the OT there; she is very proactive about making sure you have what you need. Let us know how it goes!! Best, Jennifer

P.S. Tajmom (Jennifer) goes to Hopkins too.

Hi Judie,

The staff of the ALS clinic is wonderful! I will write to you in more detail either later tonight or tomorrow (time constraints) hugs, Diane aka Rose

That's good. Keep it relative.
hugs, s.

Judie, sending you a Prairie hug! Kay Marie

Hope you are still shining your light this week Judie and that you had a good week. Soring is coming!

Hello Betsy! I have only lived in HdG for the past 6 yrs. It is a beautiful area but I'll be honest, I miss living just outside of Baltimore. That's more my style (I am not much of a country bumpkin). I am sorry to hear about you mom. You mentioned you'd like to take a walk with your mom along the Chesapeake. If she is still mobile at all please do this sooner than later. Take advantage of everything while you and she is still able. Thanks for reaching out....Judie

Judie -

I spend hours every day on this forum since my mom was diagnosed with ALS in December. I read all of the posts looking, I guess, for any information that may help my mom. What I noticed about you is your hometown - Havre de Grace. My mom was raised in Havre de Grace . She was there in August for a Havre de Grace High School class of 49 reunion. Actually she had a fall while there - turns out it was the first sign that something was wrong - none of us imagined that she would soon be diagnosed with this awful disease. I do find comfort here - and finding any small measure of comfort at this point is a blessing. I wish my mom were computer savy because I think this forum would be a help to her as well. More than anything I wish a cure would be found for these awful diseases. I'd love to take a walk atleast one more time with my mom along the Chesapeake. My very best wishes are with you and your family. Betsy Browning

I guess I am just figuring out this web page. Sorry I posted in the wrong place. Duh!

I am so sorry mike is going downhill so fast. It must be very frightening for both of you! My Paul has been declining this fall. His speech is poor and he is loosing his balance and falling, his fine motor is also going down hill like Mike's. Paul could work from home too, but not sure employer would go for that. They like everything picture perfect.

Thanks for the update on the Rilutek. I am sorry it isn't working out (yet). It must be hard for you to go to work every day, but it is probably also good for you to have some time out of the house for your own mental health. How does Mike manage on his own? We go to the ALS clinic once a year for Paul to be assessed. I hate going there.

Take good care of you.
Sandra

Hi J
My husband was diagnosed with PLS 2.6 years ago. It has been a slow progression compared to what you two are going through since the fall. I am so sorry you are going through all of this. Both of you.

Like you, I am too young to retire, so I sure worry about our family's financial future. It sure is scarey isn't it.

Hi! How is the medication going? Feeling desparate as i think my husband's employer is closing in and may offer early retirement, which we do not want :0)

Thanks for the info on John Hopkins. What do they mean borrow treatment from ALS patients? Sure would be interested to hear more.
Sandra

I had to lol at your reference to the "PLASTIC"! After 10 broken glasses-numerous bowls and plates that shattered and scattered in a 12 foot radius and left some dents and scratches in the oak floor, I have welcomed plastic into my kitchen! I also have a love of cooking and fine dining :] That appreciation lead me into creating the Britton Bistro & Bakery-long story but the shortened version is that I ended up losing our life savings and ruined us financially :[ all of that was prior to Web's dx of A
lS What is your favorite recipe? I LOVE THAI FOOD!! Kay Marie