Checking in!

[tag0620]

Hi Everyone,

I've been absent for a LONG time for several reasons.

1. We've been letting this thing play out

2. I started a business from home in order to be a caregiver to Jim...and I'm now in an office with four employees...it's taken off!

So...in letting this thing play out...we have an update:

I would have rather won the lottery...but Jim's spinal cord injuries are purely coincidental.

We just got back from the Mayo Clinic Rochester and since we let time pass...it's been 4.5 years since the first diagnosis of ALS and there is no upper motor neuron involvement that they can see...he is still speaking/singing, swallowing just fine...and has no emotional lability at all...they are calling lower motor neuron and most likely calling it PMA.

Not perfect by any means....but better. We just have to manage the internal complications that can come along (right now a weak diaphragm, leading to mucus overload, leading to a collapsed lung, leading to pneumonia)....but if we can do that....I may have many years of caregiving to come!

We got a fabulous power chair, and he's able to come into the office to hang with me...and now that we know we may be dealing with this for a lengthy period of time...we'll see if we can gradually afford to make some changes to the house to make it easier on me.

So...in a nutshell...that's where we're at. I just wanted to let you know that I've been peeking in from time to time and know we weren't forgotten. THANK YOU for that!

XOXO

Tracy

 

[HelenL]

hi Tracy, good to see you here and glad to know that your husband's progression is so slow. Good luck on the new business and praying that it continues to go well with your hubby!

 

[tag0620]

Thanks HelenL

We still have to undergo some testing for MMN and SMA to see if we have a better prognosis...so we still have some hope!

 

[laurel]

Tracy I was thinking about you and your husband about a month ago when another new member from Utah joined. It made me wonder how things were with your husband. I had my fingers crossed that the spinal issues were the answer to your husband's problems. I'm sorry to hear that the Mayo thinks that it is still motor neuron. But now I will start rooting for MMN! What kind of business did you start? It sounds like a great success. Good for you. You mentioned Jim has a weak diaphragm. I wonder if a diaphragm pacer would help? It is great to hear from you. We sure have had lots of losses on the forum since you were last here so lots of folks are new and might not remember your story--but I sure do. Take care.

Laurel