Clinic and Mini Meltdown

[Lkaibel]

We went to clinic today and heard positive things. Doctor said Brian will walk for a long time. A long time in ALS terms no doubt but still good news. Progression almost non existent from last time. Progression overall slow average and not likely to get fast. Good and more good.

We got hooked up with a bath chair, safer. We talked some movement strategies. More safe, good.... We met lots of nice people. We talked Yoga exercises. Brian can do most things, which is great. He does tire more easily.

So after all this I dropped him at home went to get some food and cried and swore in the car. Just lost it. I was so desperate to get out of the office I cannot tell you.

Brian's sister is here from Indiana. I am better now. I'd really be doing great if My husband had not gone from building decks to talking about bath chairs and leg braces. Tonight, it's a pity party. It is selfish as all get out of me, we are so very blessed and have it so much better than many PALS and CALS. We have already started losing things though and tonight that makes me mad and breaks my heart.

 

[debwilson77]

Understand completely.

 

[scaredwifetx]

Lenore, clinic is rough. I have the same issue afterwards. Don't feel bad. We are all in the same boat just different seats. It is heart breaking. That's why we are here. Sharing with a community of people who understand.

 

[vltsra]

Lenore, First of all I'm glad that you have been told his progression is slow.

Brian was just diagnosed in June. You are still going through the initial grief part of this. I spent the first three months on a daily crying jag and was basically unable to function. While I still have my moments it is not so raw any longer. I am brokenhearted when I see my sweetheart struggling to use his to hold things or cut meat; he also did physical labor for a living and is now unable to do the work that he did. We had to give up a ceramics class that we both enjoyed because it was frustrating and depressing for him to go. But we are also trying to find what joy and peace we can find now.

You are not being selfish. You are experiencing things we all do.

V

 

[tarheels65]

Keep your head up and keep the faith. In my prayers.

 

[Lkaibel]

Thanks everyone. I think I just need some rest for starters.

 

[diagnosed2016]

It's hard to go to clinic with all the other people who have ALS and see the future, in person, to talk about the future with "experts" (though I think we all become experts as we experience this) as opposed to reading about it online or just imagining it. Clinic makes it feel very real. And ALS sucks. Sorry you had a hard day, but glad there was some positive news.

 

[jayswife]

Clinic days are completely exhausting and depressing. The day we got the diagnosis confirmed I did the same thing. Please don't feel selfish.

 

[starente15]

It's ok to be sad. Clinic visits are tough for everyone.

 

[Lkaibel]

I think we need to politely push back on some of the repetition too. The Doctor and two therapists do not all need to test strength in the same areas. We also dos not need three conversations, largely the same about Rilutek.

Great clinic, great people but I get the feeling everyone wants to dooooo something when reality is there is not so very much to do. Since 21st century medicine is all about doing and so often fixing, this is hard on everyone's souls. The providers as well as the patients and families.