NeedCourage
Active member
- Joined
- Feb 22, 2014
- Messages
- 73
- Reason
- Lost a loved one
- Diagnosis
- 12/2013
- Country
- US
- State
- PA
- City
- SW
Hello to all who happen to read this.
We went to our second ALS Clinic in Pittsburgh PA today. Once again there was no respiratory therapist present. argh. I had called several times to ensure that one would be present to check T's breathing levels since we are going to Cleveland a week from tomorrow for an all day assessment of his ability to handle a Diaphragm Pacer System.
We will be meeting with Dr. Onders, one of the originators of the DPS so I know we will be in good hands.
T's breathing has taken a turn for the worse since our last Clinic visit 3 months ago... Although thin, his little body still has good muscles and no paralysis nor trouble eating or swallowing other than appetite challenges.
When I had a moment alone with our Neurologist, I finally got up the nerve to ask: "
What is my sweetheart's prognosis?"
Knowing how well some people respond to the DPS and that a good quality of life can be extended for 15 or more months... some say longer. - I was shocked to hear him say, "Well his respiratory problems are 'dicey' so I would say a year and then we will put him in hospice."
OMG>:shock::shock::shock::shock: OMG!
We were just diagnosed this past Spring '14 - and I had read 2-5 years.... looks like that may not be so.
Don't have a special question - just needed to reach out and .... hear whatever anyone may have to say. I don't know what to think - can't think.... Guess I was in a bit of denial even tho' I'm basically a realist. (I did not tell my husband...)
I feel lost. Wanna have a good stiff drink and a pack of smokes! (darn = why did I give up all my favorite things over the years?). May have to start both again to get through this.
ok - enough. thanks if you read this.
xoxox - Nancy
We went to our second ALS Clinic in Pittsburgh PA today. Once again there was no respiratory therapist present. argh. I had called several times to ensure that one would be present to check T's breathing levels since we are going to Cleveland a week from tomorrow for an all day assessment of his ability to handle a Diaphragm Pacer System.
We will be meeting with Dr. Onders, one of the originators of the DPS so I know we will be in good hands.
T's breathing has taken a turn for the worse since our last Clinic visit 3 months ago... Although thin, his little body still has good muscles and no paralysis nor trouble eating or swallowing other than appetite challenges.
When I had a moment alone with our Neurologist, I finally got up the nerve to ask: "
What is my sweetheart's prognosis?"
Knowing how well some people respond to the DPS and that a good quality of life can be extended for 15 or more months... some say longer. - I was shocked to hear him say, "Well his respiratory problems are 'dicey' so I would say a year and then we will put him in hospice."
OMG>:shock::shock::shock::shock: OMG!
We were just diagnosed this past Spring '14 - and I had read 2-5 years.... looks like that may not be so.
Don't have a special question - just needed to reach out and .... hear whatever anyone may have to say. I don't know what to think - can't think.... Guess I was in a bit of denial even tho' I'm basically a realist. (I did not tell my husband...)
I feel lost. Wanna have a good stiff drink and a pack of smokes! (darn = why did I give up all my favorite things over the years?). May have to start both again to get through this.
ok - enough. thanks if you read this.
xoxox - Nancy