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BIG UPDATE ON LAMAR!!!
For the past few months Lamar has been getting treatment at OHSU( Oregon Health and Science University). It's been roughly two years now since this nightmare all started. With the confusion and frustration in the beginning of what was happening to then pulling out my hair and crying and screaming for him to be able to see a Neurologist to getting appointments and feeling like you're just another number while waiting in line that seemed to go nowhere. To then finally getting care from not just a doctor but a care team of doctors who actually care and are just as eager towards having the right treatment that is tailored for Lamar himself not one shoe fits all type care. I honestly can say it's a night to day comparison of care between the past medical doctors/hospital to what he has now. He's taking meds to help with memory and also the hallucinations but he's also on certain supplements, most importantly lithium orotate. Small dose everyday and I've noticed him being able to do certain things, tasks like he hasn't been able to for sometime now. I'm not gonna pretend there's not a quite bit of more work to be done but him coming around the corner the other day all dressed with even his shoes and belt on shocked me. Something he's struggled with and needed step by step guidance everyday. Our goal is to have him test (cognitive placement) at a 12 and right now he's at a 9 -10. Once he (fingers crossed) can get to a 12 he will then be able to try new market drugs and clinical trials that he would so benefit from. The catch is that he would have to be ready to go at the time of the phone call and these trials can be anywhere in the nation and can last from 6 weeks to 2 years. So our big plan is to pack up this house we've been living in for 20 years now and move into a RV. We haven't done much renovation or fixing up and this house clearly needs the repairs badly, but I am trying my best to do what I can by myself and it's has been difficult to say the least. So we're reaching out to everyone again asking for any sort of help? Whether you can help manually with repairs, or packing and hauling most stuff to storage or even financially so I can hire either some movers or professional handymen? But any little bit of time, work or money would be so greatly appreciated!
We are going from a two story house into an RV. Which Lamar will do better in a more smaller, organized place and whenever we get to visit y’all he will be able to stay in his same familiar place. He's desperately wanting to leave this place so bad. As for this moment I have been packing and sorting through items to get ready for a huge yard sale, then a lot of stuff will have to make a trip to the dump and /donation. It really doesn't sound like much to do but standing in position that I've been in for awhile now, it's completely overwhelming. So overwhelming it stops me in my tracks and takes the breath out of me. Lamar wants to help as much as he can but with the unorganized he becomes confused and frustrated quickly so I try to give him simple tasks which aren't necessarily “simple” to him which can take up a lot of my time and patience that I am needing desperately. Hence why I am reaching out for help in whichever way possible you can do? I want to thank all of you that helped us along the way through this crazy, confusing, unknown journey to cure Lamar and heal our family and lives. Its been a long road and there's still so much road to cover and discover. And please feel free to reach out if you have questions or just want to talk. Conversations with Lamar can getting a little loopy and confusing at times but can end up really entertaining and have you laughing at the end but he's still here and misses everyone and is wanting so badly to get on stage at least one more time if not a bunch more times if he got his way.(fingers crossed) but right now everyday we focus on battling this disease and having him live life with being engaged and keeping all his wild crazy memories mentally alive. We Love All of You to The Moon and Back! Take Care
~The Stilwells
_UPDATE : Thank you to everyone who has taken the time and donated and /or sent their prayers. Lamar has been referred to OHSU where he will be in good hands with some experienced doctors who will help him with his memory, hallucinations, insomnia and abrupt mood changes etc. It has been and will continue to be a very difficult yet learning process on a journey to the unknown but having many of you surrounding him with kindness, patience and love helps numb the heartache we all have. This disease is one of the most frustrating and exhausting to have or watch your loved one go through. On the upside Lamar is finally receiving his monthly disability insurance as I am still taking courses for being his caregiver in which later hopefully I will acquire an income as well....but for the moment-though bills are still tight-they are manageable. I will leave this open for any donations toward Lamars up and coming travels to quite a few destinations that will allow him to visit and for loved ones to have a chance to hopefully engage in arrangements to meet up and visit him much as possible. I don't have any set dates just yet but our sons graduation is June 2nd and we are shooting for beginning our travels soon afterwards. I will definitely keep everyone posted with dates of when Lamar will be coming to a town near you . Until then God bless and we will see you all hopefully sooner that later. Thank you again take care.
- It's been over 18 months, a year and a half since I noticed something was wrong with my husband Lamar. And I wasn't the only one. His job noticed as well. I'm sure they won't admit to it because according to them they just decided to get rid of the position my husband worked, CNC Programmer. It wasn't much longer I needed to be home with him, well, the moment he almost burned down the house because he was hungry but forgot how to /trying to cook! I immediately went full throttle on what to do next. How to get him checked out, in which you would think that would be simple but it was a complete nightmare! The fact that we lost our insurance because we had been getting it through my work, therefore being on unemployment put us on healt marketplace for lower income families. So all our primary Dr.'s have changed and if you haven't seen your primary Doctor, we'll then you don't get to ser a specialty doctor (Neurologist). So the endless phone calls, emails, texts etc had started and soon as I thought I might be getting him in to see someone, our unemployment ran out! Now we got put on State insurance, no income family insurance. So we got our doctors switched up again. At this point I swear I thought I was in hell. I finally was able to get an online doctor to give my husband a referral for an MRI, blood work and a ticket to speak with a Neurologist, right? Wrong! I couldn't get anyone to send the referral over to a clinic, we'll because no clinic/ doctors were taking out of network patients! I even spent 5 weeks worth of back and forth calls with a hospital to check if the received the referral to only get stopped mid sentence the 5th week with a receptionist telling me that there's no chance of him getting seen at their hospital. You would have to think that information would have been useful the very 1st phone call but no, not for me. Little did I know that was just the beginning of doors getting slammed in my face with doctors telling me sorry that they couldn't help my husband and for him to see his primary doctor 1st. In which case when getting bumped into state insurance, he actually received Kaiser which was what we had before he became lost. So his doctor got us in a few.weeks later. And watching my husband fail the MoCa test was a complete heartbreaker. But the real heartbreaker was yet to happen. See with early onset alzheimers dementia, you have to move fast! Why, because it progresses at a much faster speed than regular alzheimers dementia ( over the age 65) and my husband being 53 you would think his medical team would get him care fast? Wrong! Every appointment was weeks or months out. And they wanted to be thorough so a list of tests were to be established before any medication can be prescribed. Which I can see that making sense but if you happen to surpass the mild stage into the moderate stage of alzheimers, you don't get the new medicine on the market. So as the main appointment that we have been waiting for approached, which was scheduled as a zoom visit, in which halfway through the Dr. wanted to reschedule for a week out so he could see him in person. Frustrated yet understood we waited another week and went to the appointment. The morning after we had a follow up with the Neurologist in regards to the Neuropsychologist findings. Well that Thursday morning appointment was useless because the Neuropsychologist didn't finish nor sent the report until that following Tuesday. Amd in that report was what shattered me. He was in a moderate stage and no longer a candidate for this new medicine that has good reports of preventing amyloid buildup, the plaque that happens with this medical condition. And if this all wasn't enough hell we were going through wealso had to fight for our basic essentials and home. See even though we applied for disability at least over a year ago, we still haven't even been assigned a ssi/ disability caseworker yet. A year and a half later and we just received both jaw dropping, heartbreaking news. That disability that we have paid into since the day we got our 1st job, is taking their sweet little time and the way everything is playing out, we'll probably receive the check the day after my husband passes. And the fact these doctor appointments are so far out and far in between I sound like a broken record to all the debt collectors? "Sorry, I don't have any income and waiting for a decision from disability!" As the foreclosure papers are coming in daily, car has been repossessed, and endless phone calls from creditors. I can't help but feel I'm cursed and am at fault why my husband isn't getting the best care he deserves. As our only son turned 18 years old 2 days ago, I cry for his pain yet happy he has been rewarded a full scholarship to PLU. Saddened his last year at home and in high school has been put on the back burner due to my husband's health being the priority of the moment. I'm asking for help for our family. I already missed the birthday and I hope we don't have to skip Christmas? Please if you can spare anything that will help us greatly and will be much appreciated. Happy Holidays and may God bless you!
UPDATE! I requested my son's School which is a "Portland Public School" to send DHS proof of his attendance, in which they did not. We were to receive welfare assistance until his graduation but because they didn't receive a copy in time they cut the welfare! So the struggle is outright scary real.
Thank you
The Stilwell Family
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