Monday, February 23, 2009

Seattle, here we come!

The big news I have to share is that we’ve finally got an appointment at the Booth Gardner Parkinson Centre in Kirkland, Washington (a little north of Seattle). They received all the admissions paperwork we sent them just over a week ago which allowed us to proceed to the next step – making the appointment.

They had a cancellation on March 10th so it was available to us. Unfortunately, when I told them Beth’s brain MRI was on March 9th and we wouldn’t have the results back for at least a week, they had to move us to the next available appointment which was April 6th. So our appointment is on the morning of Monday, April 6th – six weeks away.

Six weeks seems like a long time, especially since we’ve been trying to get this to happen for at least six months. Referrals, tests and paperwork all take time.

I expect I will be working through a great deal of anxiety between now and then. There’s also frustration that it’s taking so long. And lots of ‘what-ifs’. What if it really is MSA – what can be done? Is it too late for any treatment? What if it’s something else? Or worse – what if they say they don’t know or like here, simply refuse to do anything. Ideally we’d like to come back with a diagnosis, prognosis and a treatment plan (particularly pain management if nothing can be done to prolong life).

During the next six weeks we also need to raise some funds. Our provincial healthcare system (HIBC) has received the letter I asked Beth’s GP to write requesting funding for the consultation. They responded to the GP requesting he ask the neurologist to make the referral and either the GP has not forwarded the request or the neurologist refuses to make it. The GP said it was the latter, but I’m not sure if he even asked.

That means we’re on the hook for the cost of the trip and consult. There is the possibility that if we come back with a diagnosis we can get a new neurologist and they can complete the paperwork for reimbursement from HIBC – but for now we’re it. Beth’s current GP is refusing to make any referrals until after Seattle.

A relative has volunteered to use their reward points for accommodation for us and this will be a big help IF it is possible, if not we will hae to come up with several hundred dollars very quickly as we’ll be in the Seattle area for two nights. We’ll also be staying at least two nights at Cheryl’s to break the trip into manageable days for Beth. The consult and hospital fees will cost up to $750 (tests are extra) and then there’s travel (ferry and gasoline/petrol) and food expenses. That's if they get everything they want done and don't want us to return. More than likely they will want specific tests and then a follow-up. Another $1500? Another $2000? It just seems so much...

Our savings from donations has been chipped away at for the ongoing medical expenses, like several hundred going to keep pain in a 'sane' level of pain instead of screaming all the time. $150 every refill, same with autoimmune protectors and the other drugs just since Jan. There there are the other medical expenses (like Wheelchair Ramps) while I’ve been on sick leave (reduced pay) so we need to build that fund up before April. Beth has been donating part of her allowance toward putting money in the fund. We want to sell some stuff we don’t use anymore (Beth is selling her bicycle and skis, and trying to find the right auction house for a water-coloured steel engraving of a Scottish archer. I have decided to sell my electric piano Hohner keyboard). I’d love to find a book fair to sell some books we sorted out but I don’t think there are any around. Maybe I could list some books here if there is any interest from any of the readers.

Cheryl and I went through our red wine collection this weekend and have an amazing selection which I thought we could resell. Unfortunately, we found out that it’s illegal to resell, auction or give wine away in BC. I think it’s the government’s way to make sure they maintain control of the alcohol industry. Too bad as we’ve got a lot of wines I am sure are not available in liquor stores here. It’s frustrating because it would be an easy way to bring in some cash.

Also, if you are still interested in buying Beth’s book, Zed, I still have a few copies. Ditto with the wristbands – we still have a stock of them, too. Laura may also have some T-shirts for sale. As always, your donations are gratefully received. I honestly don’t know how we would have survived so long without all of your help.
I plan on giving you all regular updates as the countdown continues. And I’m sure we’ll bring our laptop to Seattle so that we can give you the news as soon as we have it.

In the meantime, we’ve got a busy week ahead. Tomorrow we sign the wills and power of attorneys, Tuesday I head to Port Angeles to pick up the wheelchair ramps I ordered on ebay (about 60% cheaper than buying from a local medical supplier), Wednesday we each have a medical appointment and on Friday afternoon Beth’s power chair arrives. They are going to do the programming (speed controls, joystick sensitivity, etc.) and hopefully the chair will stay here when they’re done. We’re really looking forward to Beth being able to use it. A busy week, but we really want Beth to find times to relax during it (no, that wasn't a joke, even though there are new home workers to train, and where is she going to find time to list items for sale?)


Anonymous said...

Oh that is big news! Your mind must be racing right now.

Hope you can get some rest as well as Elizabeth. Going to be a busy week or two.

FridaWrites said...

I'd be interested in some books if I can (a little tight on funds) or to donate some now and some later.

I can't see how any of it would be conversion disorder, especially with the TIAs and epilepsy and the autonomic symptoms, but if even a component were she might be able to live longer.

Victor Kellar said...

You have so much on your plate and it seems that every time you think you have something finallized, a whole bunch of new conditions pop up that you have to deal with. Take time to breathe, girl, when you can ..

Good news about Seattle. I hope something positive can come from it. I know the trip will be hard on both of you and I understand the anxiety about finances so I hope it is worth it in the end. Still, you certainly have to try.

Anonymous said...

Yeahhhhh, good news finally.

Anonymous said...

Congrats on finally getting the Seatlle appt. I have been following along for a while and when time allows I try to read the archives over at Screw Bronze and I have a question that may already be answered somewhere in those archives but since Seattle is soon I was hoping you could answer it...

I was in a similar health situation, not as life altering, but I had the opportunity to get health care from Canada (being a resident of Nova Scotia) and from the US (American citizen by birth).

I was fortunate to have a GP in Nova Scotia that agreed to follow an American plan of care should it differ from the Canadian plan.

The US diagnosis and care plan was different, my GP held to his word and provided follow up care. He jokingly said that since I was American I probably would figure out a way to sue him if he didn't treat me! The other GP's and neurologists I saw refused to follow the US plan...

I pray your GP is willing to follow a plan of care from Seattle..Is he?

Forgive me if this is already answered somewhere, but the minute I read you were off to Seattle..I had awful memories of what I went through trying to get someone in Canada to treat me based on a plan from the US.

Optistatic said...

Hooray! I am delighted that you have a date at last! It does seem very far in the future, but I suppose that this gives you a bit more time to get the money together...

It's a pity about the wine laws and the distance between us, or I would be more than happy to help you out with your wine. Good luck with the selling of things; I hope that people are overly generous.

Veralidaine said...

Wow! Six weeks is a long time, but there was a time last Spring when we weren't even talking about Fall, and now Fall is past... so I think the six weeks will go by faster than you think, especially with the new chair, ramps, and hopefully some palliative care to keep Beth comfortable and give you a chance to rest and care for your own health.

Okay, as for cost, I for one will pledge to make another donation to the medical fund before the Seattle trip.

Have either of you considered applying for a Modest Needs grant? uses community funding to give grants for specific expenses, so if you can say "The cost of xx need for Beth to get to Seattle and get treatment is $xxx.xx," you could get a community-funded grant specifically for that purpose. Their Independent Living grants are specifically designed for situations similar to Beth's.

Hope the suggestion does not offend-- I love Modest Needs, and my family usually gets together to fund a grant with them for Christmas instead of buying silly things we don't need for each other. Or, sometimes in addition to buying silly things we don't need for each other. Just trying to brainstorm ways to get financial stress off of you.

Raccoon said...

I like books. I have lots of them, and I am not afraid to get more.

Yay for Seattle! You know, the more I hear about your experiences with your doctors and your health plan, the more I'm afraid about the United States getting socialized medicine/the universal health plan.

It's legal to ship wine, in the states. Can you bring it across the border, or will you need to pay taxes on it? I'm thinking "bring it across the border, and ship it from there."

Depending on the size of the ramps that you're getting, they can be very heavy. It's great that they have folding ramps, and that they are made of a (relatively) lightweight metal, but we still don't want you ruining your back.

Linda McClung said...

Rachelcreative: Not racing so much as being overwhelmed.

FridaWrites: I would like to make a list of books that we separated a while ago for book fairs and put it online. Maybe with a series of photos.

Yeah, I don't see how it could possibly be conversion disorder either. I'm hoping the doctors in the states aren't as prejudiced as the ones here and actually will look at the facts and make a medical diagnosis.

Victor: Yeah, always something new on the plate. Today we saw a prospective new GP. Once we find one we like and is suitable AND helpful I'll feel like we've really accomplished something.

Mary: Our current GP, who is a waste of space in terms of diagnosis and treatment of symptoms has given up and is waiting for Seattle to have all the answers. He's willing to follow their treatment plan - he refuses to come up with one of his own.

Abi: I wish you lived closer too. I'd sure like to meet you one day.

Veralidaine: Thanks for the pledge and the suggestion of I will check it out.

Raccoon: My understanding is that I can only bring wine to the US that I will personally consume while I am there. Which means I could only bring in a bottle or two at a time.

I got the suitcase ramp, I think. It folds in half lengthwise, is 6 feet long and weighs about 30-35 pounds. Cumbersome but not too heavy. It will be more weightlifting exercise.

D Phoenix said...

That's fantastic news and no doubt quite overwhelming as well. I really hope that you find a new GP. Even if the GP you have now is willing to follow a Seattle treatment plan, he generally seems quite useless and inconsistent and I wouldn't think he'd be a good partner in this. Fingers crossed for a new on-the-ball GP.

Raccoon: don't be afraid of socialized medicine. Beth has had really bad luck in Victoria but I know for myself and many others that we have a higher quality of medical care in Canada than what we could afford in the US. I have had many MRI's, CT scans, specialists appointment, physio and it has all been covered. My friend in is an in-patient rehab clinic for arthritis and it's great and it's all covered under her regular provincial medical plan. No one is going bankrupt here because they have medical needs. Just had to say...

And back to you, Linda. Take good care. I wish you all the best in your fundraising efforts.

Lisa Moon said...

Wow, that is such a lot to take in! It does seem a long time away but I'll sure be hoping during that time plenty of money flows your way to make the trip without that concern.

I can't even imagine the stress that you're under and I am thinking of you all often and wishing you the best and even some fabulous miracle - for what that's worth.

As someone who's waited 2 years for a diagnosis and then another for treatment (still waiting, 3rd year anniversary!) while battling with workers' comp, and living with 24/7 severe chronic, disabling pain I know the frustrations I've been through. Insane.

I imagine that, many times magnified and suspect that might be some of what you've gone through. My heart goes out to you all and once again, I'm struck by the amazing relationship, the family the three of you form. It seems to me you are all a great gift to each other.

Blessings to you all.

Dawn Allenbach said...

I am certainly interested in books, and I know others who would be, too. Certainly you should list them.

HOORAY fr the appointment, and HOORAY for it being only six weeks away. I know that's a long time for Beth at this point, but with a specialty clinic, it REALLY could've been longer.

What if you gave the wine as a gift for welcome medical donations f a certain level(s)? It's a THANK YOU GIFT, not a resell. People give wine as gifts all the time. *wink*

Neil said...

At least there's a date for Booth Gardner. You will get there, I'm certain of that.

What's the name to look for on eBay, please, if we want to see what you and Elizabeth are selling there?

Love, hugs, and courage being sent via telepathy,

Lene Andersen said...

I'm trying really hard to win the lottery. Really hard.

I think it's a great idea to list the books, etc., here - built-in audience! And would you mind linking to your ebay page? Maybe some of us could help with putting up the ebay listings so Beth doesn't have to?

Anonymous said...

I'd like to buy a copy of Zed, how much is shipping over to the UK?

It's great news about the Seattle appointment, I hope the 6 weeks passes quickly and relatively non-eventfully.

Waiting for important medical appointments always seems to take forever, but then they're tomorrow in no time at all.

Thinking of you all.

Linda McClung said...

Donimo: We're on the hunt for a new GP. Was pleasantly surprised to find a number of competent doctors advertising they were accepting patients through the College of Physicians website. I went through the list of GPs and looked them up on - a great reference if you're looking for medicos.

Lisa Moon: I agree - Cheryl, Beth and I are family and a great gift to each other. But I also feel the readers here are family, too.

I expect the next 6 weeks will be very nerve wracking, particularly as the appointment draws near.

Dawn: I will try and list the books in a future blog post. There are about 5 large boxes that we set aside before Christmas for bookfairs that I would love to winnow down.

Interesting idea about giving the wine away. I'll have to think about that one and how I could advertise it. Beth and I still need to discuss which ones we're willing to part with.

Neil & Lene: Our userID on ebay is l-bstuff. Beth has listed a few items already. The link is:

Blue-82: Thanks for your interest in Zed. The book is $15 + $8.65 to go to Europe. If you're interested, please pay for it via the donation button. Thanks.