Hi. I’m Patty and I’m a wife and mom in my 50’s dealing with Amyotrophic Lateral Sclerosis – ALS (also known as Lou Gehrig’s disease, or Motor Neurone Disease). I was diagnosed in 2012 but had symptoms as far back as ’09. I have been on hospice since February, 2015.
Blogging has become my therapy. It’s not easy. Since the spring of 2014, after losing the use of my hands and voice, the only way I can “type” is with my Tobii eye-tracking communication device. Everything written since then has been typed using only my eyes. Yay technology!
This is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.
New here? You may be interested in . . .
How long has this been going on?
Ok, so far 
Hello , I have nominated you for the “VERSATILE BLOGGER AWARD”.
Glad to meet you here… Keep posting 🙂
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Oh my! I’m so honored! That’s very kind of you. Thank you!
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Its my pleasure 🙂
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A very happy hello to an inspiring blogger! I just wanted to let you know that I’ve nominated you for the “Very Inspiring Blogger Award”. 🙂 Don’t feel obligated to go through the acceptance steps, I know how crazy life can get with busy schedules and such. I wanted to share your blog with my readers because I wanted them all to see how great you truly are. You have helped motivate me to keep my head up, and this is kinda my way of thanking you.
If you’re interested in accepting the award, the details are here:
Thank you for being you! Hope you’re doing well 🙂
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Wow! What an honor! Thank you so much. One of the best things about starting this blog is discovering so many gifted writers out there on the interwebs!! And you are certainly one of them! Not sure I have the energy to go thru all the steps but we’ll see how the week goes. Again, many thanks for honoring me this way!
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Hi Patty! So glad to find you here. I have a severe arthritic condition and I totally understand how chronic illness affects our day to day lives. But God is good and walks through it with us. I’m relatively new to the blogging scene and I’ve enjoyed reading a few of your blogs here tonight. Your attitude is refreshing, and I look forward to following your journey, and praying for you. Thanks for sharing with us.
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Hi Peg! Thank you for stopping by! I just visited your blog and I’m looking forward to reading more of your posts. All prayer is much appreciated. I’ll keep you in prayer also.
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Thank you,Patty!
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Thank you, Patty. God bless you.
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Nice reading about you
Thanks for visiting my blog. Be in touch. Browse through the category sections, I feel you may find something of your interest.
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Dearest Patty, I am sorry. I just watched my brother-in-law through a condensed version of ALS. His was way delayed in diagnosis because it presented in dementia vs the normal. It is a hard illness. And you definitely understand the concept of livingly dying since there is little pretend w.ALS. I was diagnosed with distant metastasis when I got my ovarian cancer diagnosis in peak health at 50. I was the most fit of my peer group – ha ha, I laugh ruefully. Illness humbles you.
I wish you the best as you process out loud. Let’s stay in touch.
warmly,
Marcy Westerling
http://livinglydying.com/
p.s. i wonder if this essay speaks to you. It is odd having your pink slip from the world. http://livinglydying.com/2013/04/21/expiration-date-an-essay-on-livingly-dying/
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Hi Marcy. So sorry you have had cancer to deal with. I enjoyed reading your essay. My perspective is a bit different as I am a Christian. To me, this life I’m wrapping up is only a pre;ude, so to speak, with something much bigger and better in store. I do not mean to preach. But my faith is the main reason I don’t feel constant despair at my diagnosis. I still hate this ALS!! But I don’t fear it as much as I would without Christ.
I love your way of putting it: livingly dying. Yes, I think that describes it to a T.
Thank you!
— Patty
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My faith is more nebulous. I am open to all of the above and feel faith that I will be accepted for the deeds I have done. So, I dont have much fear. I do feel sadness, though. For every plant I wont get to see blossom, for ever clear sky, I might miss – these little/big things that bring me so much daily joy. Detachment is not me strength!
hugs
Marcy Westerling
http://livinglydying.com/
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Dear Patty
My name is Jenny and I am a post-graduate student currently completing a research project as part of a Masters in Health Psychology at the University of Staffordshire.
I am contacting you because you are completing a blog and have detailed that you have a diagnosis of Motor Neuron Disease/Amyotrophic Lateral Sclerosis (MND/ALS).
As part of my project I am reviewing online blog data and investigating the thoughts, feelings and experiences of bloggers who have a diagnosis of MND/ALS. I was hoping to review and analyse your blog entries as part of my research project.
I have attached an information sheet to this comment (below) for you to review regarding this research project.
Any data used from your blog will be anonymised. My educational supervisor and I will have access to the data kept from your blog. Your data will be kept for a period of twelve months and then destroyed securely. I may use quotes from your blog in my final research paper; however these quotes will be anonymous and will not identify you or anyone you mention in your blog content.
If you do not wish for me to use your blog data in my project or have any further questions please email me back at s029047b@student.staffs.ac.uk by 28th January 2014.
Alternatively if you have any concern about any aspect of the study or wish to speak to my educational supervisor please contact Amy Burton at amy.burton@staffs.ac.uk or on 01782 294661.
Many thanks
Jenny
Participant Information Sheet and Consent Form (Blog Owners)
An Investigation of the thoughts, feelings and experiences of bloggers who have a diagnosis of Motor Neurone Disease (MND) / Amyotrophic Lateral Sclerosis (ALS). What role does blogging play?
I would like to invite you to take part in a research study. Before you decide I would like you to understand why the research is being done and what it would involve for you. This information sheet tells you the purpose of this study and what will happen to you if you take part and also provides information about the conduct of the study.
Please read through this information sheet and ask any questions you may have. This should take no longer than 30 minutes. Please talk to others about the study if you wish.
Please ask if there is anything that is not clear.
What is the purpose of this study?
The purpose of this research is to investigate the thoughts, feelings and experiences of web bloggers who have a diagnosis of MND/ALS. This study will make recommendations on future research and practice.
Why have I been invited to take part?
The researcher has invited you to take part because you have completed or are completing an online web blog and have a diagnosis of MND/ALS.
Do I have to take Part?
No. It is up to you to decide whether to take part or not, please discuss this with your friends and family members if you wish. If you do not wish to take part, please email the researcher (s029047b@student.staffs.ac.uk) within one week of receiving this information to inform them. If the researcher does not hear from you they will assume you are supportive of your data being used in this research project.
What will happen if I take part?
If you decide to take part in this study the researcher will analyse your past blog post content over a 12 month period and highlight any common themes that might occur in your blog and the blogs of others in a similar situation to you. After this initial stage the researcher may get back in touch with you to see if you wish to provide some further data through an email interview, however this will be entirely voluntary.
What are the possible disadvantages/risks to me taking part?
No risks are identified from your data being used in this study. Any quotes used in the final research paper from your blog will be anonymised and will not identify you or any other people mentioned by name in your blog.
What are the possible benefits of taking part?
This study may not directly benefit you but it may help inform future research and practice regarding the experiences, thoughts and feelings of individuals with a diagnosis of MND and the role that blogging plays.
What will happen if I don’t want to carry on with the study?
Your participation in this research is entirely voluntary and you can opt out of participation within 1 week of receiving this information without giving reason. However after this period any information provided may be used in the final research paper.
What if there is a problem?
Any complaint or problem you have about the way you have been dealt with during the study will be addressed.
If you have a concern about any aspect of the study you can contact my educational supervisor Amy Burton at amy.burton@staffs.ac.uk or on 01782 294661.
Will my taking part in the study be kept confidential?
Yes, your taking part in the study will be kept confidential. Any data you supply will be anonymised by the researcher. The researcher and educational supervisor will have access to any data you provide. Your data will be kept for a period of twelve months and then destroyed securely. The researcher may use quotes you provide in the final research paper; however these quotes will be anonymous and will not identify you.
What will happen to the results of the research study?
The results from this study may be published in a journal. The researcher can provide you with a summary of the research findings if you wish. No individual taking part in the research will be identified in any of these reports.
Who is conducting the research?
The researcher is completing this project as part of a Masters in Health Psychology at the University of Staffordshire, United Kingdom. Contact details for this researcher are Jenny Smith, s029047b@student.staffs.ac.uk.
Who has reviewed this study?
This study has been reviewed and given favourable opinion by The Department of Health Psychology Ethics Board at Staffordshire University.
Please keep a copy of this information for your future reference. Thank you for taking the time to read this information.
If you do not wish to participate in the study please reply to the researcher at the following address:s029047b@student.staffs.ac.uk
By 28th January 2014.
Many thanks
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Hello Patty, I am sorry about your fight with ALS. I am a son of a person with ALS. I wanted to do something about ALS for him and for others like him. However, I need help, and I want to make sure that others like my father are interested in this project.
Please visit us at ALSFight.com.
Thank you.
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Hello Mike,
It’s good that you are interested in helping those affected by ALS. There are many excellent resources online such as the MDA and the ALS Association. Not only do these organizations help in practical ways, they are also involved in research toward finding answers, treatments, and eventually a cure. These are resources here in the United States. I do not know where you live. If you are not in the USA, I hope wherever you are there are similar organizations. Wishing you and your family all the best. Patty
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Hello Patty, my father has been living with ALS for over 20 years. I don’t know how much more time he has but i have really enjoyed having him for this long, since the doctors gave him just 3 yrs. i pray that you too live a long life. I will be following you. Stay strong, God is watching!
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Hi !
I too am living with ALS. Thank you for sharing your belief that God didn’t give you ALS. I feel the same and you worded it perfectly!
Prayers for you! Heidi
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Thank you for writing, Heidi. Glad to meet you! God bless you.
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Hello,
My name is Glen Hosking and I work for Dunn&Co., an advertising agency located in Tampa, Florida. We have been working pro bono with the ALS Association- Florida Chapter for the past five years to help support ALS walks, rides, and general awareness.
We have read your blog and want to thank you for your courage in sharing your journey with ALS. Your efforts and contribution to the ALS community are both inspiring and humbling.
Our latest ALS awareness campaign honors the 75th anniversary of Lou Gehrig’s famous farewell speech. His parting words to his fans inspired us to find a way for others to share them as well.
So we created ALS Love Letters, a website that allows people to compose and share messages of love and support using Lou’s words. Once created, these Love Letters can be saved and shared via email.
Below is the link to the website. We hope you will write a few Love Letters of your own and share the link with your friends and family so they can write some as well.
http://www.alsloveletters.com
Thank you again for sharing your journey. Let’s continue to spread love and support together as we try to create a world without ALS.
Glen
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Oh Patty, you are truly an inspiration to so many! WE draw strength from you. So how could I not nominate you for the Inspirational Blogger Award? I will post this on my blog tomorrow with the rules. If you are too busy to nominate all 15, don’t worry about it but I hope all who search for hope will find it in your beautiful words. Blessings,
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Oh, how kind! Thanks!
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Hello Patty, I am from Peru, I am in the same way, my husband have been diagnoses with ALS, and I can”t find any doctor in my country who knows about this illness. The doctors told us “no think in the future just day by day”, no cure… no treatment, so sorry”, and that’s it!. We are planning to travel to USA, just let me know if you can advise us what to do.
The best for you
Carmela
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Carmela, I’m so so sorry. The truth is your doctor is correct. There is no treatment or cure. BUT there are ways to manage the problems you will encounter. Devices to help him stay independent as long as possible, things to help you as his caregiver, etc. I hope you can find a support group. That has been our greatest help. God bless you.
Patty
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Dear Patty,
My sister died of ALS in 2006 after living with it for 10 years. I’m so pleased I found your blog. If that had been an option for Diane, she would have gone for it! I’ve begun using some of her written words in my blog–as a way of reflecting on her and on myself. She was a courageous woman–just as you seem to be. Thanks for showing up and sharing what’s happening inside of you–not just on the outside.
Elouise
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I really enjoyed your posting and am working my way through your archives I recently started my own blog about my life with ALS. I would love to get your feedback on it.
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Hi Patty,
I really enjoy your blog and I was wondering if you might be interested in sharing a special blenderized Thanksgiving dinners for your readers on feeding tubes.
Holidays like Thanksgiving when people gather around the dinner table can be incredibly difficult not only for ALS patients on feeding tubes, but also for their caregivers.
Julie Bombacino, CEO of Real Food Blends and the mother of a tube-fed son, created a blenderized Thanksgiving dinner for her son and other tubies.
Here is the recipe: http://realfoodblends.com/turkeyfortubies/
I hope you like it!
Thanks,
Betsy
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Hi Patty…how enormously brave of you to write about your journey. You are a true inspiration! xoxo.
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Hello Patty – I have been reading your blog as I have been searching for answers regarding my own journey medically. I am glad to see your update and had a few questions that you may be able to answer? I would like to directly contact you maybe via email as I do not wish at this time to share publicly my information as the backlash has been harsh too me online trying to deal with my particular situation. What I can state is that I have been diagnosed with Upper Motor Neuron symptoms and in a half witted way, Lower and this is where I see some similarities to possibly having a slow version of ALS. To me it no longer matters much about Upper vs. Lower as where I am at I have been already been told there is no treatment or cure and it will progress and yet I still have no diagnosis (I have 5 possible, but none quite make sense). At any rate if you are willing to answer some ?’s please let me know and if not it is ok. Thank You! Betty
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Hi Betty. Sent you a reply via email.
Patty
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Hi Betty,
My mom was diagnosed with ALS, and, like you, she has an amazing attitude and is inspiring many who know her. She wrote a song and had it recorded and gifted it to the ALS Association to use to give others with ALS hope. Please take a minute to see her song at https://www.youtube.com/watch?v=4_PMmSRkcQY
You can see her story at the end of the video. She hopes to get this to as many people as possible. It was performed at the Toledo ALS Walk and Celebrate America in Sandusky Ohio.
Thank you!!
Erin
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Thank you, Erin. Beautiful!!
Patty
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Hi Patty… I do subscribe to your blog, and find within your posts not only valuable insights, but more than a few matters for prayer. I just wanted to assure you that those prayers for you and all PALS and CALS arise to His throne regularly.
Know that I, and many, continually lift the entire PALS/CALS community in prayer. You are loved, Patty, by Him and by us!
Fr. John
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