First ALS Clinic Visit

We had been waiting since January the 14th "The day of Don's definitive diagnosis" to attend our first clinic appointment, the day we were given the devastating news we had so many questions and had run out of time, so the first clinic appointment was another chance to ask more  & I made sure we armed ourselves with any questions we needed answered for our visit.


The morning of our appointment started off great because we had been blessed with clear skies, something we had not seen in New Hampshire for quite some time and headed out in our clunker for an almost two hour drive. About twenty minutes into the trip I mentioned to Don that the road we were on did not look familiar and he said "I was just thinking the same thing", thankfully we had a cell phone and I immediately called my angel friend Heidi & explained where we were and she said "you are heading in the opposite direction, you need to turn around and go all the way back"!


One thing Don and I have always enjoyed as a couple was taking drives together, I have never driven and have always admired Don from the passenger seat, having raised four children being in the car together was our time out. Now Don gets directionally confused and could have directions in front of him and still get lost, our trips as of recent have been extended sometimes by an hour or more due to being lost.


Finally we arrived at DHMC ALS clinic and while in the waiting room met some lovely people also there for clinic, sadly none of them lived in NH & they had travelled even further than we had, it was great to meet other folks who were living with ALS & there was swaps of emails & phone numbers.


The clinic started off with us being put in a room, the first Doctor we saw was a respiratory doctor, we were pleased about this & Don after a few quick questions was taken away to have his respiratory testing done right then and there, we were given a read out however no explanation to what level his breathing was at, just a comment that the reading could be off because bulbar ALS patients tend not to have good control with the mouth when doing the test, so now we will have to wait till next read out to see if there is a bigger decline in his lung capacity, he was told his read out was enough to have a required sleep lab to test him for a bi pap machine to help him breath easier at night, the sleep test will be done at the end of the month.


After the respiratory doctor it was all on, we saw doctor after doctor without barely a breathing space & it was like a rotating door, with Don's neurologist being the last with only about 10 minutes to spare before the end of clinic, there was the usual barrage of questions, eating sleeping, breathing, limbs, speech, we had no time left to ask much of anything. There was a mention of a trial phase 2 starting in April 2011 that DHMC was just given, I had to ask the doctor if Don would meet the criteria, he looked at Don's respiratory read out and said perhaps.


 The social worker knew of our terrible living environment and took information from us & between her and the ALS North Eastern Chapter Rep Christine they will compose a letter to help us medically get out of our lease if possible.


As to Don's drop foot on his right leg, the physiotherapist said he could give Don a brace but hesitated to do so because using a brace makes the muscle useless much faster, but it was noted in his chart that he has visible drop foot.


So all and all our first clinic was rushed chaotic and of very little help of the immediate kind, ALS is a  waiting game, so Don is waiting for a decline in breathing, brace for drop foot when he can no longer walk without tripping or falling, he has to buy his own speech aid, he was not given a different drug to help him sleep, they just upped the drug he already takes, they did not discuss the peg tube & we did not even have a nutritionist there to ask about one of Don's biggest issues because she was on pregnancy leave.


We left the clinic with our heads spinning, needless to say Don got lost again going home but this time it was only about a 10 minute delay, time for a GPS in the car.


FOOTNOTE: The hospital called back to ask Don about a feeding tube, and the social worker told Don to approach the landlord to explain we cannot live here anymore due to Don's disabilities, and according to the  veterans HQ they have not received Don's medical papers yet,  I will be making a lot of phone calls this week on Don's behalf, isn't that what clinic is for? isn't that what the ALS Assoc helps with, isn't that what the Paralyzed veteran's of America rep helps with? are we alone in all this chaos?HOPE NOT.