doctors

[myownself]

Myownself - I just checked to make sure - the closest ALS clinic from Bellingham is in Seattle (90 miles away) at Virginia Mason Hospital - (for non-VA patients). On this Thurs (Oct 9th) the local Evergreen ALS chapter is meeting noon - 1:30pm at the Peace Health Education Bldg at the far east end of Squalicum Way (East of the main hospital). You might come just for your own peace of mind & support.

Thanks for the info and I'm aware of the local ALS support group. I work full time days so I can't get to the meetings Eric won't go without me. Anyway I wish I could meet with other people but he doesn't like me to go without him and he doesn't like to go out. I don't have friends and I feel very trapped.

Today he said he might go to a doctor on Tuesday, my next day off, or hopefully make an appointment for next week if that doesn't work. He's lost a lot of weight (more than 80#) recently and that's what is finally concerning him, he is wasting away.

How do i grieve for my husband friend lover companion for more than 27 years.

 

[myownself]

Well, if he feels he doesn't need diagnosis, I can understand that. But if he would want social security benefits, Medicare, and equipment, he'll need a diagnosis and prescriptions. Same for survivor benefits.

This affects you directly. You may need to use everything in your power to save yourself from the economic impact of the disease.

With such a rich family history, a doctor might diagnose him based on frank paralysis without needles.

Yes you're right it does affect me but in the end it's his choice. I can only hope he chooses to help me because I'm too small to help him

 

[Music67]

If it means anything I had 3 of those needle procedures and each one lasted at least an hour (2 hrs one day!) but they didn't seem to bother me much at all. Perhaps we all have different pain thresholds but I never thought mine was any "better" than others. I remember shots terrifying me as a kid.

 

[gooseberry]

Interesting Music 67. I had one for what turned out to be a pinched nerve in c3-4 several years ago. Lots of pain when they did it up and down my whole arm. My husband had 3 emgs to be diagnosed and said no pain at all. Maybe it just proves the point about its not sensory...

 

[lgelb]

University of Washington is actually closer to Bellingham (admittedly not by much but another option). It is an MDA center so not on ALSA's list.

Since Eric for financial reasons needs a formal but individualized diagnostic process, you might check in w/ both UW and VM as to availability of an appt. Lead times can be long and that would give him some time to adjust.

Also, in the evening so maybe easier to get to, the Seattle group is having 3 mindfulness sessions @ Virginia Mason over the next couple of months (I do realize it's a hike to Seattle but if you can get a day off, maybe you could combine a clinic visit w/ the support group -- it is a Wed. clinic and the mtgs are Wed. evening).

Also, perhaps your husband, having mostly seen family members affected, might benefit from meeting a stranger -- Music, perhaps? who can provide a less emotional perspective on living with ALS.

 

[Music67]

I had first tried to get into the U. Wash neurology dept (before Vir. Mason) for an analysis and I couldn't believe how many hoops I had to jump through - even with my local dr's recommendation. It was going to take me months to see one of their staff. Besides that, my Group Health would only cover Virginia Mason.

 

[myownself]

Man, there's too much. He's in pain all the time now. He lifted too hard and injured his hip. I work full time and my job is very physical. I'm doing the yard work and shopping because he can't get out. I'm exhausted. And I don't make enough money to cover bills let alone extra medical expenses. He'll see a regular MD on Friday and that will be billed to insurance. I don't know what the insurance (Washington Basic Health) will cover. The idea of going to Seattle for anything is overwhelming. I guess I just have to deal with overwhelming too.

 

[cheerleader]

Myownself, all of us CALS understand your exhaustion. Never realized how much my hubby used to do till he can no longer do anything to help. Do you have someone who can talk to him FOR your sake! Sure he isn't realizing how his lack of facing up to the reality of things will impact you, financially and emotionally. Anything you can get him to do to keep the weight on will prolong his life. You are in a tough situation right now. Good luck.

 

[myownself]

help. how do i blog. how do i share without starting a thread. i can't find my way around this forum and i need contacts and i need a vent and my pdoc isn't enough so can someone lead me through this complicated als forums website?

 

[myownself]

how do i get in touch with any of you personally? music67 offered but i don't know how to ptp anyone. i can't figure out how to use this place can anyone help. [email protected]

 

[Music67]

I went to "User CP" (far left choice on the blue colored bar at the top the page) and inside that I clicked on "Contacts & friends" and added your name to my contacts for a personal contact.

 

[GregK]

Once you hit a certain point (number of posts, etc) you will be able to send PMs, private messages.
See the attached graphic. You click on someones username and select "Send a private message to <user>."