Update on Tammy

[Markbreton]

I have not visited this site much since the spring so I thought I'd give a brief update on my wife, Tammy. Well, its been 4.5 years since diagnosis. She has been on a vent for over a year now. Luckly I have private insurance and with it I get home nursing 24 X 7. Although Tammy can no longer move any parts of her body, except a small amount of head and right arm movement, she appears to be making the best of this awful situation. For example, the nurse who is working today took Tammy shopping and for a haircut and color.... Last week we went to the park and spent some time outdoors. We are definitely not doing as much as we would like and with the snow quickly approacing things outdoor activities will slow down.
I've read some articles in other threads where there is talk of ending ones life when the PALs feels it is time. Although I respect all the various ideas and individual feelings on this, Tammy and i thought we would share some of the slightly positive things we do. Choosing to go on the vent was a BIG decision and we have not regretted it. YES, it's lots of work and a hugh commitment, but we are making the best of it. Definitely we still have days when we both cry and wish things were as before! We pray every day for a cure and the vent is helping keep Tammy alive in anticipation of this. We realize a cure is not around the corner, we would be foolish to think otherwise.
ALS is not a death sentence, there are ways to stay alive if your beliefs let you do so.
In closing we try to stay as positive as we can, as hard as this is.
God bless all of you!
Mark & Tammy

 

[Jane]

Thank you Mark, for this positive uplifting post. We all need to hear these things, to get a better understanding of what life could be like even with such huge changes.
Good Luck and God Bless,
Jane

 

[Al]

Thanks Mark for the update. Glad things are going reasonably well and Tammy gets out. I do a lot of sitting on my patio just watching the birds at the feeders. Small things that still bring joy.


AL.

 

[joelc]

Thank you for the update. I am happy you guys are making the best of a difficult situation. Continue to enjoy life as I do!

 

[laurel]

Thanks for the update Mark. I remember reading your posts over the years, but I just went through all of them again. I admire your honesty in describing your journey with Tammy in dealing with this dreadful disease. I'm glad you have the private insurance that assists you in caring for Tammy. I am praying for you both tonight.
Laurel