Still JUMPING FOR JOY despite everything. Who else has a family history like mine?

My story is this; I have Parkinson's and I am the 5th person on my paternal side to have this disease. We have a familial gene of ALS on my maternal side. My mother, who passsed away in 2009 was the 5th person to have ALS, and the 6th person my only sibling, my sister just passed away from ALS in December of 2011.

It all seems like a nightmare, but this is reality our family. You know growing up as children, even in our early adulthood no one thought about our DNA, or our Genes, or the Markers that we are made up of. But we found out all to soon. I have lost my job due to my symptoms, my loss of energy, and my mental mistakes.

At this time I can no longer work due to early signs of dementia and so I have been researching products for quite some time to help with many aspects of our illness, and other illnesses like ALS and MS. I have had what I consider success which I have shared on other blogs. I am confident that in time you will see more and more things being introduced to help us combat this fight!

Thanks again for reading my blog.

JerriB

4 Replies

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  • Thankyou for sharing your story with us which is very informative, you are an inspiration. Good luck and keep up your great spirit and inspiration to all who suffer from any neurological disease

  • JerriB, While your story is extreme to say the least, you are not alone. My Dad died from ALS and my brother will likely die in the next few weeks, also from ALS and of course, I have PD. There is a great deal of research going on with families with multiple neurodegenerative diseases such as ALS, AD and PD. The Siddique lab at Northwestern University has a data bank of family samples, including ours. If you're interested in participating in the research, contact them, or leave a note here and I'll see that you can reach them.

    I have been able to control my PD through forced pace cycling. See pedalingforparkinsons.org for more information.

  • NancyCyclist, Thank you so much for sharing with me. Most people can not say "know what you are going through", however believe we can say that. I would love to know about the Siddique Lab and Northwestern University. I am all for anything that can help all of us who suffer from these diseases. Also, I will check out the pedalingforparkinsons, I think that will help me tremendously!

    Again Thank you so much for your information. You are the first person I have found to have a the same story. Please lets keep in touch and I will keep you in my thoughts and prayers.

    If you want you can messege me on here.

    JerriB

  • JerriB, You can reach Nailah Siddique at Nailah A Siddique <nsiddique@northwestern.edu>. She is fantastic at working with families and I'm positive she will be very interested in your story. Another world leader in familial ALS research is Dr. Eva Feldman at the University of Michigan, Eva Feldman <efeldman@med.umich.edu>. She will also be all over your story. Here is a highly recommended website for ALS: als.net/. If you send your email address, I'll forward two articles on forced pace cycling published by Dr. Jay Alberts at the Cleveland Clinic. I don't know how to attach them to this site.

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