Run Lacy, Run for CJD (Creutzfeldt-Jakob Disease): New life...

Saturday, August 16, 2008

New life...

Uncle Ray went home peacefully early Friday morning. I'm glad that I went to go visit him when I did. It kind of feels like he was waiting for me, just like my dad waited for him. I didn't think it would all happen this fast, but I couldn't be happier for him that he is finally free. Please continue to pray for Uncle Ray's family. I know that they will really miss his heartwarming presence, I know I will.

Also, please send some prayers out there tomorrow morning for me because I will be running 14 miles. I have never ran more than 13 miles so I'm a little bit nervous that it will all go ok. I had such a great run last weekend...I just pray that God confirms to me that I can do this. I'm going to go to bed pretty soon here so that I will be all rested up. Wish me luck!

One more thing, I need to know if any of you out there would be interested in purchasing a shirt and if you want, you can order it with "Loved one" instead of "father" and you can even replace "run" with "walk". Please shoot me an email and let me know. I don't know of the exact price yet, but the cost will include for the shirt, printing, for Holli and a little donation to my dad's account. It will most likely be more than $20 I'm thinking. I just need to know how many are interested so I can place an order and they can give me a bulk price.

Check out this Fox 9 News Story. It is frustrating how much CJD goes misdiagnosed and incorrectly reported. Even though only 8 have passed away in Minnesota from CJD....I'm pretty sure the actual number is much higher. It is here and we need to know more!
Misdiagnosis: CJD

Last Edited: Thursday, 14 Sep 2006, 3:13 PM CDT
Created: Wednesday, 13 Sep 2006, 5:17 PM CDT

AP

FOX 9 -- Her daughter say their mother sparkled in her golden years, but when Shirly Rassieur turned 68 -- it was like someone flipped a switch.

She lost the ability to walk and talk. Suddenly, she couldn’t figure out how to work the thermostat.

The doctors diagnosed Shirly with Alzheimer’s, even though some of the symptoms didn’t fit. Shirly didn’t just slip away -- her decline was abrupt and brutal.

When she dies in July of last year, her daughters demanded an autopsy.

They found their mother dies from Creutzfeldt-Jakob Didease, or CJD -- often referred to as a human form of mad cow disease.

Like British mad cow disease, which is transmitted through contaminated meat, the disease is caused by the same microscopic and indestructible protein.

No one knows what causes cases of CJD in the U.S., which afflict about one in a million.

The Minnesota Health Department has been tracking CJD deaths since 1991. Last year eight people died from the disease, but the health department bases that number on death certificates.

Shirly Rassieur’s death certificate still says Alzheimer’s -- her doctor refuses to change it.

It’s a disease that stole the sparkle from the woman they love, and her daughters can’t help wondering how many other cases may be misdiagnosed.

Source: www.myfoxtwincities.com/myfox/pages/Home/Detail;jsessionid=60D2D47D0B02B08E3FD1CD1EAF6614F9?contentId=876930&version=1&locale=EN-US&layoutCode=TSTY&pageId=1.1.1&sflg=1

2 comments:

EllieBean said...: I will order one that says walk cuz I certainly do not run and Kyle will get one too! HEHEHE. You should have one made for LJ that says I crawl in a baby sized shirt. HEHEHE

Love you,
Ellie; August 17, 2008 at 6:06 AM
becki said...: I'll take one that says walk.

Love you,
Mom; August 17, 2008 at 7:34 AM

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My Story

Just about 1 year ago my dad was a healthy, active and happy 57 year old man making the most of his retired life. However, in mid-July 2007 he became very stressed by the death of his father and soon after started to complain of some visual problems. On August 3rd, the day I came home for a visit from Guatemala, my dad went to the doctor because he was concerned that he may have had a stroke. His doctor was not convinced and told him that he just needed to visit the eye doctor for a new pair of glasses. It seemed logical that his vision would get worse since he was getting older and he hadn't seen the eye doctor in over 8 years. However, we quickly noticed that it wasn't only his vision problems affecting him as his mood was more down, he was slower, he couldn't sign his own name, he became more forgetful and his hand-eye coordination was off. One week he was able to drive up to the Boundary Waters and the next week he could barely drive more than a mile, swerving in and out of the lines. These drastic changes made us act quick so we brought him down to the VA hospital in the cities. What we thought would just be a day visit ended up turning into a week of testing. A neurologist and his team of medical students examined my dad and the puzzled looks on their faces and the lack of information they gave us started to make us think that this was something serious. Our assumption was correct because on Friday of that long week and after a shocking abnormality discovery from the EEG, they revealed to us their findings. They narrowed down what my dad was possibly suffering from to two diseases, Hashimoto Enepholopathy or Creutzfeldt-Jakob disease. Both conditions are very rare, but we were hopeful in that one had a cure. My dad returned early the following week for a few more tests specific for diagnosing these two diseases. A week later we received news that they ruled out Hashimoto Encepholopathy, which unfortunately was the one with a cure. A few weeks went by and my dad quickly started to regress going from one week being able to walk on his own and the next only being able to take a few steps. After a long wait, we finally received the results back from the second spinal tap which revealed that my dad's Neuron Specific Enolase count came back as 163 when it normally should be 16. This is indicative of active neuron cell death and also characteristic of CJD. They further explained that his MRI showed areas of positive diffusion in his ocipital lobe which is another sign of CJD and also, explains his vision problems in the beginning. Because this disease can only be conclusively diagnosed with a brain biopsy after death, the Doctor stated that he was sure that my dad has Sporadic Creutzfeldt-Jakob disease with a Heidenhain variant. The disease is very difficult to explain and to avoid making this introduction any longer, I encourage you to visit the CJD foundation website to learn more. We decided to care for my dad at home as those were his wishes and we wouldn't have wanted it any other way. His suffering ended on October 6th, 2007 and he is now full of joy with God in heaven.

What is CJD (Creutzfeldt-Jakob Disease)?

Prion diseases are a group of rare, invariably fatal brain disorders which occur both in humans and certain animals. They first came to public attention in the mid 1980s in the form of the BSE epidemic in the United Kingdom. BSE (bovine spongiform encephalopathy) is a prion disease in cattle. Tissue from infected animals may have contaminated cattle feed, leading to the silent spread of the BSE epidemic. There is also a theory that BSE came from feed contaminated with scrapie, the long established sheep prion disease. Inevitably, concern over whether BSE could pass to humans mounted.In humans the best known of the prion diseases is Creutzfeldt-Jakob Disease (CJD), which reportedly affects around one person per million per year. In the United States this translates to 250-300 new cases per year. It is well known that CJD is very difficult to diagnose leading to speculation that the one case per million report may be incorrect. Most of the cases are "classical" or "sporadic" CJD (sCJD), occurring for no, as yet, known reason. The sporadic form accounts for approximately 85% of the cases, the familial form approximately 15%. There have also been a few cases which have occurred from contamination via medical procedures; this type is known as iatrogenic or Acquired CJD. Finally over the last few years, another type of Acquired CJD called variant (vCJD) has been identified in young people. vCJD has been linked to ingestion of beef tainted with BSE (bovine spongiform encephalopathy), most cases have occurred in the United Kingdom.

How to Support

If you would like to send a donation please do so to:
TCF Bank
7800 Penn Ave S
Bloomington, MN 55431

Or you can send your donation to my home address:
Lacy Hladky
5148 Lyndale Ave S #2
Minneapolis, MN 55419

Or you can visit any TCF bank and deposit your donation in the Lawrence Hladky CJD Benefit Account #6439197637

Make all checks payable to: Lawrence Hladky CJD Benefit Account
Please write the account # in the memo section: 6439197637

I will be accepting donations up until the day of my dad's 59th birthday, October 24th. The total of the donations received will be split and half will go to the CJD Foundation to help spread more awareness and the other half to the CJD Surveillance Center to help with more research to find a cure.

Thank you so much for your generosity. It is very much appreciated!

My Training Schedule

Beginner Plan

Week	M	T	W	T	F	S	S	Total
1*	Rest	4 miles	Rest	1-hour run	Rest	4 miles	6 miles	15-16 miles
2	Rest	4 miles	Rest	1-hour run	Rest	4 miles	7 miles	15-16 miles
3	Rest	4 miles	Rest	6 miles	Rest	Rest	8 miles	18-19 miles
4	Rest	4 miles	Rest	6 miles	Rest	Rest	9 miles	18-19 miles
5	Rest	4 miles	Rest	4 miles	Rest	5-K race	6-8 miles	19-21 miles
6	Rest	5 miles	Rest	7 miles	Rest	Rest	10 miles	22-24 miles
7	Rest	5 miles	Rest	7 miles	Rest	Rest	12 miles	22-24 miles
8	Rest	5 miles	Rest	8 miles	Rest	Rest	12 miles	25-27 miles
9	Rest	5 miles	Rest	8 miles	Rest	Rest	14miles	25-27 miles
10	Rest	5 miles	Rest	4 miles	Rest	10-K race	5 miles	24 miles
11	Rest	5 miles	Rest	9 miles	Rest	Rest	16 miles	30-32 miles
12	Rest	5 miles	Rest	9 miles	Rest	Rest	18 miles	30-32 miles
13	Rest	5 miles	Rest	10 miles	Rest	4 miles	20 miles	39 miles
14	Rest	5 miles	Rest	10 miles	Rest	4 miles	10 miles	29 miles
15	Rest	3 miles	Rest	5 miles	Rest	3 miles	5 miles	16 miles
16	Rest	3 miles	Rest	3-mile jog	Rest	2-mile jog	Marathon

Larry Hladky an Inspiration to Many...

For those of you who don't know my dad he was truly an amazing man. There are no words to describe just how special he was to me and so many others. He was such an easy-going man who always strived to have fun with every day that was given to him. He was so young at heart and loved to bring joy to all around him. He was not only giving of his money, but especially of his time. He was a Vietnam vet, he worked for many years as a machinist, he was a loving husband, caring father, special brother, fun uncle, loyal friend and a legend high school tennis coach in Becker. My dad is truly an inspiration to me and I thank God every day for the honor of being his daughter. Throughout his sufferings he was so patient, so humble, so strong and so full of love for God. He made the most of the situation to bring smiles to our faces either by making wierd looks or saying something so funny just out of the blue. He was such a light of the comfort that God's love brings because even as he cried and we quickly rushed to be by his side and hold him, he instead comforted us by saying, 'I'm happy.'

Romans 5:1-5'Therefore, since we are justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have obtained access to this grace in which we stand and we rejoice in our hope of sharing the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit which has been given to us.'

Run Lacy, Run for CJD (Creutzfeldt-Jakob Disease)

Saturday, August 16, 2008

New life...

2 comments:

My Story

What is CJD (Creutzfeldt-Jakob Disease)?

Blog Archive

About Me

Current Amount Raised

How to Support

Informative Websites

My Training Schedule

Larry Hladky an Inspiration to Many...