Dreading upcoming ALS clinic visit

[bigmark1954]

He shouldn't have said that! They can't forecast progression. Period. However, 3 years or even one wouldn't sound so bad to me right now

Hey Max........maybe I am just being a little sensitive. I can't seem to even watch TV without getting emotional lately. My doc actually wrote 1-3 years in my prognosis letter, along with him telling me that. He also acted surprised when I told him I wanted to start Rilusol right away?
I do think he is very competent and through, and I would rather have him be brutally honest, than have a doc that sugar coats.

 

[dalvin]

Mark, he may have been surprised because you want it. When I was first diagnosed, my doc asked me if I wanted it and I said no. He said he wasn't surprised because very few of his patients want it

 

[azgirl]

My 2nd clinic visit is this week and I don't want to go either,Mark. Just dreading seeing the results of all those tests.

 

[bigmark1954]

My 2nd clinic visit is this week and I don't want to go either,Mark. Just dreading seeing the results of all those tests.

You said it AZgirl, that is one of the biggest reasons....it is kind of like being a "deer in the headlights"!
Please tell us how yours goes......and I will do the same.

 

[hjlindley]

I understand The dread of going to clinic. By the time they do the neurological exam I'm wiped out for days. I raised money for them to buy decent pulmonary equipment, but they have not done so yet.I'm not scheduled for another six months and by then she should have her pulmonary equipment. It's only an hour drive but they want me there by nine and I usually am not out of bed much before eight.

 

[gjbuddy]

Hi Mark,

I know what you mean. I have my 3rd clinic visit tomorrow. I told my husband this weekend, if I didn't get in a clinical trial or something, I'm not going back. I have a good doctor but really not much he can do except check me. I get stressed thinking about it but .... I guess we have to do it.
GJ

 

[MaxEidswick]

Cheer up Mark -- you will do ok ... My next clinic is in July, but I doubt I'll make it that long ...

 

[patrick123]

Going to clinic is such a dread. It about a four hour thing including driving. But my doctors are great. The sledge hammer my Dr. Uses to check my reflexes is about 10 feet long. One day I was sitting in the comfy exam room and saw the sledge hammer and hid it. She asked me if I had seen it, and with the most expressive puppy dog eyes I could muster and said no. Well she found it, damn, it must have a GPS on it.

 

[Barbie]

Max, you are worrying me. what is going on?

 

[Jeff Long]

Mark,
Yep, clinic days suck. As much as they suck though, they are still useful. Kinda like childproof lighters.
I don't like hearing how much 'progression' I've had between visits, but if knowledge is power then I'll take all I can get. I like to say I am dying slowly and with great resistance; the info I get at the clinic helps me do that.

On an unrelated note, awesome work on the trike. Thanks for the photos on the other thread. I may consider doing the same to my '05 Electra Glide so I can extend my riding days. Speaking of riding, I am headed to Sturgis this year and then out to CA to ride Route 66 eastbound. Not thrilled about doing 66 in August, but I no longer have the luxury of planning too far into the future! So, for all its crappiness, ALS has cured my procrastination problem! I'll just have to log miles in the early mornings and late afternoons, but the bars are open in between those times so all should be well.

I think maybe I'll build an HD body kit to slap on a wheelchair when it's time...

 

[MaxEidswick]

>Max, you are worrying me. what is going on?

It's OK, Barbie -- just losing right arm/hand and flunked the Fingolimod ekg ... fast progression and no treatment sucks

 

[MaxEidswick]

>I think maybe I'll build an HD body kit to slap on a wheelchair when it's time...

LOL, Jeff --- can hardly wait to see the pics! Another of the Advocacy group is doing Sturgis, too ...

 

[bigmark1954]

Thanks to everyone who commented on this thread......it did help because I thought I was the only one who thinks clinic SUCKS!
I spent the day with my son and granddaughters yesterday....my son commented on my new and more relaxed demeanor .....all I could say is......"Dying is very liberating". Life is to short to hold grudges and spend my energy being negative....I work toward a more relaxed dynamic as I am winding down.:wink:

 

[skipper66]

My dad's first neurologist was extremely cold. I work around Dr's all day and never seen anyone quite so heartless as her. I wrote a extremely bad review about her on a website. It was supposed to be annonymous but somehow she saw it and threw my dad out of her office. I feel sorry for anyone who ever goes to her. She totally had no heart whatsoever and talked down to all of us. She was from Terre Haute, Indianna and that's all I'll put.

 

[zoohouse]

Mark, Tim's son flew to Seattle and met us there, where Tim was in the clinic, to come for a visit in Canada. He and I shared a room and got some great conversations in, and what he told me is that his dad is so much more mellow now. He said his dad was mad most of the time, and could be difficult to deal with. I find that very interesting, as in the years that I have known him I have never met a more positive person, who is so easy going. His son hadn't seen him in 1 ½ years, and was in tears for most of the time until he went to bed, as he found it very difficult to see his dad this way. He is outside with him right now checking out the garden with his father and laughing.

Paulette