Another day in the life. . .

[Music67]

On Wednesday I attended a Seattle hospital ALS clinic. I was duplicating studies that the VA already does on me but this hospital has a standing IVIG offer which I was hoping to initiate. However my assigned nurologist who made the offer didn't show up so I had to have my concern passed to her via her partner who saw me.
On the positive side all my pulmonary test numbers actually improved from my first visit and the strength-testing of all my body parts were good except for my "paralyzed" left arm, hand and weakened left ankle.
The most moving part of my visit was actually meeting others with ALS for the 1st time! I met 2 guys in particular that I made an effort to get to know who both just broke my heart with their conditions. Both were confined to wheelchairs, one guy, about 55, could not speak at all & communicated via a specialized ipad with voice responses installed. The other guy, around his late 20s, was a former mechanic but now his 2 hands just lay on his lap. However, he could still speak a little bit. It just made me feel so grateful for the abilities I still have! Fortunately, both men had supportive wives with them.
The rest of the day I couldn't get these 2 guys - Mark & Jason - off my mind (Still haven't). In fact I just got off the phone with the hospital trying to arrange contact with Mark's wife to set up an email connection but the operator couldn't give me an answer at this time since there are certain rules about that sort of thing and I didn't know his last name. (Wish I had remembered to do all this when I was sitting with him!)
Anyway, I think these 2 guys & another that I met really brought home to me the hidiousness of this disease but it also enlarged my family if you know what I mean. I was so gratified at the immediate bonding that I felt with them and I actually felt even closer to them than my biological brothers - if that's possible.
By the way the neurologist that saw me at the hospital was taking part in an ice bucket challenge that day.

 

[MaxEidswick]

>The most moving part of my visit was actually meeting others with ALS for the 1st time!

my reaction exactly!

 

[Music67]

Max,
I realize that there are many wonderful people here in even worse condition than those that I met on Wednesday (Bless them all!) but I guess to meet someone face to face really makes a difference. To tell you the truth I was a little embarrassed as I met them since I wasn't as "banged up" as they were although I have apparently had the disease longer than they had.

It seems like we are all different in our disease in some significant way.

By the way, I still need to find out about that Visiting Angels benefit that I was told about a week or so ago. My call with that representative who had told me about it was cut off before we could talk & he didn't answer when I tried to call back.

 

[MaxEidswick]

>To tell you the truth I was a little embarrassed as I met them since I wasn't as "banged up" as they were although I have apparently had the disease longer than they had.

slow progression is good -- at first I was embarrassed at my 1st clinic, but now that I'm catching not so :-(.

Richard, you just keep it slow and don't get 'banged up' any faster than it goes!

 

[Texas Quilter]

My first ALS Clinic visit was so overwhelming. But I was grateful for the people that came over to speak to me - with their own weak voices, a Boogie Board or via a computer program. I too was embarrassed that I was so much better off than others but soon realized that they all started out that same way, if you know what I mean. I go to the Houston ALS Clinic every 3 months (its about 700 miles away) and its always a difficult day and also a great day of discussion & encouragement from others. I now make it a point to try & talk to anyone who is new. Everyone gets a name tag, which is really nice and there is a booklet with everyone's name, address & email address (If they want it in there).
Dianne

 

[Music67]

Dianne - The name tag & booklet is a great idea! I'll have to mention that if I go back to that hospital again (I only went this time because they have an ivig offer pending). I usually go to the VA & I'll mention those ideas there, too. I thinks its an important perogative to let the down & out know that someone cares . . . even if we, too, are suffering. When I called the hospital about them passing on my name & phone number to the patient that I met they said due to privacy laws they couldn't do it.

 

[MaxEidswick]

Dianne, you must be one of Appel's from the sound of your clinic. Mine was last July, next in October. Are you in mine?

>When I called the hospital about them passing on my name & phone number to the patient that I met they said due to privacy laws they couldn't do it.

Stanley's clinic is in a world of its own the booklet is great and probably breaks 100 HIPPA rules but no one has complained in 20 years!