Monday, December 29, 2008

Symptom Timeline (so far)

Symptom Timeline

· March, 2007 – Noticed weakness and fine motor skill hesitation on right hand 4th and 5th digits at the end of long bicycle rides (50+ miles).

· May, 2007 – Deterioration of handwriting and noticed a marked reduction in right arm swing when walking. Tremor in right arm when stretching and yawning.

· August, 2007- Saw Dr. Biswas (neurologist) with concerns that I may be showing signs of Parkinsons. MRI of brain showed no damage.

· September, 2007 – Cycling crash caused right shoulder damage. Handwriting and use of computer mouse became difficult.

· Dec., 2007 - March, 2008 – Right arm stiffness, tremor when lifting or gripping, reduced motor skills, Ratchet-like movements.

· April 2008- began to notice tremor in right arm AND leg during stress or fatigue.

· August 2008 – Saw Dr. Canali at Campbell Clinic for shoulder damage. Referred to Dr. Santos Martinez – MRI on neck and shoulder. EMG on right side was negative. Referred to Dr. Sills.

· Sept. 25, 2008 – Saw Dr. Sills who ordered more MRIs. They were negative for neck or brain damage.

· Sept. 2008 – Began to perceive a change in walking gait and sensation of weakness in right leg similar to right arm sensation. Occasional muscular twitches would cause jerks of arm or leg.

· Nov. 2008 – All of the above coupled with a feeling of despair at times.

· November 14, 2008 – Dr. Mervat Wahba diagnosed Corticobasal Ganglionic Degeneration. Mean survival time after diagnosis – 8 years. This is bad!

· November 30, 2008 – During visit to San Diego it became obvious that during times of stress, such as telling loved ones of my condition, a nonessential tremor would emerge in right arm and right leg. Even while playing a game that required performing in front of a small crowd the excitement brought on minor uncontrollable tremor.

3 comments:

  1. I feel for you. My dad is now in his 8th year post-diagnosis, and it has become increasingly difficult for him AND my mom. He is at the upper end of the life expectancy for the disease, which is impressive. I would seriously recommend you visit with an elder law attorney and discuss estate planning...now. If your care requirements become extreme, there is a 5 year federal lookback period in which you cannot shelter assets from nursing homes. It used to be only 3 years, but the feds upped it. Give as much as you can to your kids now and ask them to "keep" it for you or your wife to get back later as needed.

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  2. Thanks the good advice. I am trying to get my finances in good shape, but I have run the family books forever and I worry about trying to teach my wife all there is to know. I hadn't considered hiding from nursing homes though. Some days I feel like the worst is way off and other days I feel an overwhelming sense of dread. Today....not so bad. Thanks again!

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  3. Bob,
    From what I've heard from our advisor, they even look at gifts to kids, so hiding assets is probably not an option. Also, if it's out in the open like this, not so good!

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