Wednesday, April 3, 2013

Suffering and hope


For a while there, I thought I was never going to feel well again.  I was taking more medication than i was before, and having less 'on' time.   I am having a communication problem with my neurologist at Stanford.  She keeps telling me how i feel, and I keep telling her otherwise.  She doesn't listen to me sometimes.  She has all these charts and graphs and equations and algorithms that tell her how I am supposed to feel, but sometimes they are just dead wrong.  I am going back to my neurologist at Palo Alto Medical Foundation to see what he thinks.

All that being said, I suddenly started to feel better after my last "adjustment",  and now I have hope.  The doctor says that sometimes it can take a year to a year and a half to get it right.   Maybe  I just need to be more patient.

Bob and I are going to the Parkinson's Unity Walk in NYC on April 27th.  I can hardly wait!  Happy Parkinson's Awareness month to everyone!

6 comments:

Mari Wilson said...

Thank you for this blog, and Thank you, Google for finding it! My husband has been diagnosed for 2 years and your messages are helpful to me in seeing this disease through his eyes. He is always tired, yawning and shuffling. It feels as though I am watching him disappear slowly. We are in this together, and it is so helpful to know we are not alone.

Anonymous said...

I also want to thank you for this blog and your posts. My dad has had PD for 5 years (he's turning 68 in May). The way you describe things, and how you're feeling, is helpful for me. My dad, who is obviously in so much pain and discomfort, doesn't explain or say much. He has declined so much in just 5 years. It's so hard to see him this way. I wish you the very best. I will continue to read your posts. Jamie in California

Jean said...

I was just recently made aware of your blog from a friend at bowling. My husband has Parkinson's, diagnosed in 2009. He does a combination of Western and Eastern treatments. We have been fortunate to have discovered a program that truly provides hope, so because hope blooms in April, I would like to share the following links: www.coloradoparkinsonsproject.com and pdrecovery.org The PD recovery program project has been in existence for 20+ years. I am so grateful to have been told about these programs and wanted to share this information with anyone interested. My best to you.

Marian said...

Mari: Thank you so much! My whole purpose in starting this blog was originally to try to help others, but it turns out that it helps me, too. The responses from people like you give me hope and encouragement. I hope you continue to share the progress of your husband; I think being a care giver is harder than being a patient; it must be so hard to watch this happening to someone you love.

Jamie: I'm so sorry to hear about your Dad. It's very hard for us parents to share any of this with our children, even if they're grown. You have inspired me; I will try to stop hiding things from my son. He's 26 now, and probably would like to know what's going on. Thank you for the insight!

Jean: thanks for sharing this. Alternative treatments get ignored sometimes, and it's something that might make a huge difference to some patients. I hope your husband is doing well: keep your fingers crossed for a cure!

kaitlynroland said...

Good luck working out all the 'kinks' in your management post-surgery. I know it will all be worth it! And enjoy being with the Parkinson's community on April 27th - I hope you draw some inspiration from it! Take care and thanks for sharing! Kaitlyn
kaitlyn
kaitlynroland.wordpress.com

kaitlyn roland said...

Good luck working out all the 'kinks' in your management post-surgery. I know it will all be worth it! And enjoy being with the Parkinson's community on April 27th - I hope you draw some inspiration from it! Take care and thanks for sharing! Kaitlyn
kaitlyn
kaitlynroland.wordpress.com

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About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.