shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
I apologize - it has been so long since I last have been on here I almost forgot how to post!
Life has been a lot of the same old same old. Jim is progressing slowly, though some of his ALS symtoms have been coming up. He has lost weight yet again. His breathing is stable but he has lost a lot of strength especially in his arms. He now needs assistance to cut his food and to put on certain items of clothes like coats and shirts.
We had been preparing to go to Washington DC for ALS Advocacy weekend again but our oldest makes her communion that weekend. Between that and the extra expenses it was just to much. We hope to make it again next year.
We have started working with a new neurologist, Dr. Appleby who is now at the Cleveland Clinic via John Hopkins. He ran some bloodwork on Jim that looks for a genetic marker that links FTD with Parkinsons-like symptoms. Though Jim does have ALS his movements are often described as Parkinson's-like. We should get the results next month. There was mention of refering Jim to a program and NIH - though that too will be discussed down the line.
A big part of my extended absence was I was studying for different ultrasound registries. I finally passed my OB/GYN registry in March and my vascular technology registry in October. But my excitement was short lived when I realized the 1st part of my Vascular ultrasound registry had expired and I had to retake it AGAIN - and it was a physics exam.
I appealed to the Board of Directiors for the accrediting agency since I missed the deadline by just months due to an error on my part. I explained that I have lost days. week, months and years of my life since Jim's diagnosis and just had lost track of the correct day. (I thought I was good when I passed the test._ I included Jim's med records, the NIH FTD booklet , ALS articles and 2 articles on the stress of ALS and FTD on caregivers. WELL - they ACCEPTED it! So I am now DONE studying (I would like to say forever.)
I am currently working on a plan to celebrate my success and Jim's fight. I would LOVE to take the family on a trip to WDW. It has been 2 yrs since the last trip we took there. The kids still have memories - but I want to make a few more. We were once told Jim had 18-36 mos, then 3-5 years. Now I don't ask - he has been fighting for almost 3 years since his diagnosis and what we think is 5 years with the FTD. I want to CELEBRATE!
We took a Disney Cruise for our honeymoon - I am looking to recreate that with my kids this time. The cruise portion may not happen - but I am hoping to make the Magic Kingdom a reality for us again in the fall.
Sorry for rambling - just wanted to catch up. Remember you can always check out Jim's Blog: shaggymetz.blogspot.com - but that isn't real upto date either!
Life has been a lot of the same old same old. Jim is progressing slowly, though some of his ALS symtoms have been coming up. He has lost weight yet again. His breathing is stable but he has lost a lot of strength especially in his arms. He now needs assistance to cut his food and to put on certain items of clothes like coats and shirts.
We had been preparing to go to Washington DC for ALS Advocacy weekend again but our oldest makes her communion that weekend. Between that and the extra expenses it was just to much. We hope to make it again next year.
We have started working with a new neurologist, Dr. Appleby who is now at the Cleveland Clinic via John Hopkins. He ran some bloodwork on Jim that looks for a genetic marker that links FTD with Parkinsons-like symptoms. Though Jim does have ALS his movements are often described as Parkinson's-like. We should get the results next month. There was mention of refering Jim to a program and NIH - though that too will be discussed down the line.
A big part of my extended absence was I was studying for different ultrasound registries. I finally passed my OB/GYN registry in March and my vascular technology registry in October. But my excitement was short lived when I realized the 1st part of my Vascular ultrasound registry had expired and I had to retake it AGAIN - and it was a physics exam.
I appealed to the Board of Directiors for the accrediting agency since I missed the deadline by just months due to an error on my part. I explained that I have lost days. week, months and years of my life since Jim's diagnosis and just had lost track of the correct day. (I thought I was good when I passed the test._ I included Jim's med records, the NIH FTD booklet , ALS articles and 2 articles on the stress of ALS and FTD on caregivers. WELL - they ACCEPTED it! So I am now DONE studying (I would like to say forever.)
I am currently working on a plan to celebrate my success and Jim's fight. I would LOVE to take the family on a trip to WDW. It has been 2 yrs since the last trip we took there. The kids still have memories - but I want to make a few more. We were once told Jim had 18-36 mos, then 3-5 years. Now I don't ask - he has been fighting for almost 3 years since his diagnosis and what we think is 5 years with the FTD. I want to CELEBRATE!
We took a Disney Cruise for our honeymoon - I am looking to recreate that with my kids this time. The cruise portion may not happen - but I am hoping to make the Magic Kingdom a reality for us again in the fall.
Sorry for rambling - just wanted to catch up. Remember you can always check out Jim's Blog: shaggymetz.blogspot.com - but that isn't real upto date either!
