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joaniekay47
Sex: F
Data Quality: 1 star
MS: 3 yrs
Type: Primary Progressive
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: severe

joaniekay47

Female, 49 years
Marysville, WA

Primary Condition
MS
Type
Primary Progressive
First symptom
Diagnosis
Deceased
Aug 20, 2010
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About joaniekay47

Hi all, I am a glass half full kind of person. That hasn't changed anyway. I was diagnosed by my neurologist on August 16th, 2007. Since that day life has had many changes. I went from a full time job, to reduced hours, to unemployed because of disability. I was officially released from work on January10,2008. They were pretty cool at work and I miss the people that I worked with. I just could not commit to certain hours for 5 days a week. I now either am in a manual wheelchair or with a walker. I hope to get a definite diagnosis on the particular type of MS soon.

I still count my blessings, which are many, more that anything else. And would still rather it be me dealing with this disease than anyone else that I know.

Its an interesting learning curve on this journey. I am a care giver by nature, so now I have to take care of myself as number 1. I actually have made that change slowly but surely. Its taken time and support from family, friends, and God or whatever you would like to call him (or it).

 I am a proud parent of three young men, 23, 20 and almost 16. I just celebrated my 25th wedding aniversiry to my husband. He is a good man and I am glad he is here for the long haul.

Heat and stress seem to hit me hard, especially heat. The stress I can usually handle pretty well. I do have those days though. 

Saw my neuro on Thursday July 10th. I asked about further testing to verify or limit the possibilites of my type of MS. I guess with time they will be able to have a more acurate idea. Since I was diagnosed less than a year ago and now am walking with assistance, it is pretty obvious that it is progessive. So we will go with the secondary progressive while we can. Next visit  I will ask about the next MRI.

8/5/08 I had a second echo done today. One of the follow up tests for being on Novantrone. I should here from my neuro next week if I need to stop, delay, or change treatment.

8/19/08  I passed my 1yr diagnosis anniv. (No flower? Go figure...) and 1 yr my mother-in-laws going to be with the Heavenly Father the day after. Aquick year it has been. I usually sign off with SPT&Ps. So FYI its sending positive thoughts and prayers. Take care all

2/27/2009

So I got to see an MS specialist on February 25th. His name is Dr. George Kraft, he speaks nationally and really knows his stuff. It was a great long appointment. All my questions where anwsered. And even though it was hard news, I felt more optomistic and hopeful when it was over. 15 recommendations are being sent to my regular neurologist. I also will have a SSEP done with Dr. Kraft in June. It only does the test one day a week so is booked up until then. I changed my diagnosis because I won't know for sure about the type of progressive MS I have until after that test. Will stay me and positive on this journey.

7/7/2009

I can now lay claim to PPMS. I was given the official word today. Soyou all hang inther! I am! SPT&Ps!

7/29/2009

Went to that scary dark place 2 days ago. I HATE THIS MonSter! It absolutely sucks to be trapped in a body that won't do what I want it to do or need it to do! I cried and had my own pitty party for a while that day. I realized how deep the pain and grief could be for me. It is hard to know the need for help, and to have to rely on others. It makes me feel blessed to have my husband and my young men willing to help me. And to have such great family and friends. I am also thankful for my faith. I know especially on those dark days he is by my side quietly seeing me through it all. SPT&Ps! Thank God for my PLM family! No one can understand it better than you folks!

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Member since: Jul 02, 2008
Last Login Sep 10, 2010