Recent content by robynp

My husband is a retired Lieutenant from MA and he sends you a salute!!

I have been in the NP001 study being done in Charleston for the last few months. All I can say is I have no problems at all. Being a double blind study I do not know if I have received the drug or placebo. I did have one bout of tingling and mild burning upon the first infusion. Good Luck...

I can barely walk without grabbing something to hold on to, I can use rollater and limp my way into mall perhaps or grocery store but my legs are so tired. Takes my rest of day to recover. Am I ready for wheelchair??

Checking in from sunny Myrtle Beach!!!

Not quite ready for this, but does anyone know if these types of vehicles can be leased

I am the PAL and I have the same type of issue. I look at my childrens', grandchildrens' and husband and mom's pictures and just cry. i am too young to die. I dont want to leave them. I dont want for them to go through this. I have been on all sorts of antidepression drugs...therapy...

I as well have been identified as a good candidate. I am awaiting my appointment date for the medical screening.:smile:

I would love that!:)

michelleann80 You are only about 3 1/2 hrs from us! Perhaps a day trip!

i am going to discuss this with my therapist tomorrow! Yes, i do believe on some level he is burying his head. He is very headstrong but ver loving. I thinl that he is having trouble wrapping his head around this. Now I can tell he is very angry with himself but no apology thus far. MEN!

after reading this read, i want to thank cals for understanding your PALS decision. I am one of those PALS who does not want any intervention prolonging my life. I will not suffer the long goodbye, nor do I want my family to endure it either,

My husband seems unable to grasp the concept of my limitations. He has not read any of the materials about ALS. He can see my exhaustion, can see my limp, can see my dropped foot prosthetic, can see that I use a rollater walker, can see me lagging behind him 10 ft when he walks. Case in...

yes, my husband and I went and it was mostly just a caregiver support group, I was nice to meet people but I seemed to be the only one mobile of the PALS. Will try again. Thanks. ;-)

I hope someone does too, I am still mobile with left sided symptoms ...dropped foot and loss of small motor skills of left hand. I also have alot of lower back pain due to ALS or the funky limp, not sure, Within 3 months of moving to Myrtle I was diagnosed, I never got chance to meet many...

live in Myrtle Beach and was here a few months before I was diagnosed with ALS so my ability to meet new people was limited. I feel so isolated, Would love to have a cup of coffee with a PALS!8)