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?)