My wife and I went for an early morning walk Saturday. It was brisk out but beautiful to see the sun come up. We took our dog Kiya with us. She did very well staying right next to my wheelchair. We did 2 miles and then stopped at a park to let Kiya play. Here are a few photos. So much of God's blessings all around us :)
Hello all. After much prayer and hours of soul searching over the last month, and with great encouragement from my friend Michael I have decided to do something I have long dreamed of.
What is the Big Announcement? "Life's Unexpected Journey" this is the working title of a book I am writing about my life with a terminall illness. I have a billion ideas on how to approach the book, fiction, non-fiction, a bit of both etc. I have started putting "words to paper" and will just ask God to guide my thoughts and words as I write. I do not have a time frame set, it will be when God let's me know my work and words are done. I then hope to publish the book and go from there.
I will need all your encouragement, prayers and support. And I may be asking some of you to share your storeis with me or about me. Wish me luck :)
The other morning I had some energy so from inside my house I set up my still camera and took 3,056 still photos of the moon setting during the morning hours of 6:30am to 8:30am. I complied them today down to 30 seconds. I will be experimenting more with this procedure as I love video and photography.
Thanks for following. Remember to vote in the poll to the right please.
First off for all of you following this blog and posting comments, I want to assure you that I have read and do read all comments. I have been very tired to try and send replies but hope to this week.
So it's about 1:45pm the other day and I actually felt hungry. What is easy to make I thought? I know some mashed potatoes, as I love them. I get out a pot put water in it, clean the potatoes put them in the pan with a lid on it and turn the burner on high. All is good.
I go back to lie down in bed and start watching some TV and tell myself I need to check on the potatoes at about 2:05pm.
Time goes by and I am dozing off and on and watching TV. All the sudden my dog Kiya, a german shepard mix, starts barking uncontrollably. It upsets me as she does this from time to time like if she see's a lizard outside she wants to chase, or any noise outside.
I lay in bed for another few minutes getting more upset at her continuious barking. I finally get out of bed to find her about 3 feet from the stove with her nose point right up at the top of the stove. All the sudden my brain kicks in, "Crap the potatoes", I rush to the stove turn off the burner and move the pot, now full of burning potatoes and no water left. I then turn to Kiya and praise her and tell her "Kiya you get the save for the day!!"
Oh by the way by the time I went out and Kiya was barking, it was 3:30pm. That means the pot with the potatoes had been on high for almost 2 full hours. Ok so I learned my lesson, I am no longer cabaple of cooking when my wife is not home. So its microwave or nothing. Thanks Kiya!!
I was fortunate enough to receive a copy of this book from my good friend and author Michael Houbrick. I have known Michael and his brother Matt since the early '70's. Michael brings so much joy to all those who know him. I am asking if you can follow the link and support him in his first novel. I have read it and it gets the highest marks from me and I am not a "reader." Also if you have children, Michael is also a children's book author and has a fantastic set of books with the ever funny "The Rat Pack of Hollywood." Please click the buttons above and let Michael know we support him! :)
I know that is a strange heading but wasn't sure how to explain this post about time. We all have it, want it, need it and seek more of it. But for me with a terminal illness time seems irelavent. You w0uld think that would not be the case.
What I mean is that being disabled and not having to live with the schedule of work, children (all our kids are grown), deadlines etc, time is just passing by. But I see that as a good thing. I cherish all the time, every second and moment I get to spend with my beautiful wife, children and family.
But I also know that now my time is limited and that I most likely will not live the "normal lifespan", whatever that may be. But I am ok with that as I have always had a strong faith in God and Jesus and do KNOW that there is life beyond what we have here on earth. And I know that someday we will all be together again, those who are left and those who have passed. So time no longer has a hold on me like it did before my illness.
One last comment on time is that for those with disabilities or terminal illness, well at least me, things take much more time. For example my son cleans pools, he can do our pool in probably 20 mintues give or take. When I do the same things he does to clean the pool it takes me between 2 and 3 hours. Same with ADL's (Activities of daily living). One most days when I have the energy to shower, shave, get dressed, take my meds etc, it's a good 1/2 hour to an hour. I used to be able to do the same thing in about 15 -20 mins.
So to me time no longer has a grip on me. What time I have, I cherish. So I ask you to take some TIME each day and cherish what is most important to you. It doesn't have to be a lot of time, but what if you just took 10 minutes somewhere in the day just to be alone or with a loved one, special animal etc and just cherish what you have.
Hello all, just wondering if any of you have mild to moderate breathing issues. I had issues last fall after surgery where my 02 sats where in the 80's. Since then my stats seem to be ok, but I still have periods mainly at night, with our without CPAP where I feel like I am having trouble breathing. I am going to get a full set of pulmonary function tests done. Just curious if anyone else has experienced this.
Other than that, things are going ok, still tired and slow, but can't complain. Any day I am able to spend with my wife and family is a blessing :)
Well the sleep monster is back...lol. It is so strange to get between 10 and 12 hours of sleep a night (although restless and interuppted) and then I get up for an hour or two and my body is ready for more sleep. This happened last October after some gallbladder surgery and I figured it was just recuperating from the surgery.
January and February were pretty normal as far as not being "sleepy" during the day. Well the last couple days I have slept an additonal 3 or 4 hours during the day time. And no change in medications or anything else unusual.
Has anyone else experienced this? I am tired of the sleep monster.. :)
Every March 1oth my heart breaks and I yearn to hold my daughter Brandy in my arms once more. Brandy passed away on this date in 1982. I usually go to her grave site and put some roses down and release a Happy Birthday Balloon in her honor. Since I am no longer in Spokane I can not do that, so my oldest daughter Amber and my grandson Juillian will be doing that for me today. Thank you both as that means so much to me. To Brandy: Daddy loves you and misses you and longs for the day I can hold you again :) God Bless.
I will also try and share a little bit more about me besides just the disease progress and journey. Today is Saturday and so nice just to relax and spend it with my wife and our 3 dogs. Just taking it easy.
I used to be a professional vidoegrapher and photographer but now that I am disabled it is too difficult to do much of this. But I wanted to share some photos that I have taken over the last several months from my yard. Enjoy. Please note all photo's have a copyright. God Bless.
Also remember to please click on the poll to the right and vote if you have not :)
I hope everyone is doing well. I have not posted in a few days due to not feeling well. I have had some health changes over the last week or so that are trying to keep me down but I am determined to keep on fighting.
The dizziness that started this whole journey several years ago is back. Not 24/7 like it was but definitely when I am laying down with my head flat. This makes it hard to get a good nights sleep. I also have been headaches on a daily basis now at anytime of the day. Luckily a couple of migraine pills seem to take care of that. I also have now developed an off and on again tremor in my left hand. The other night I could not get it to stop so I finally just set on my hand..lol. I admire and respect those of you who have tremors you live with all day every day.
Lastly and probably my biggest challenge's are that my legs have become very weak and even though I am still able to walk they just feel like they are going to give out any second! I have left my beautiful wife know that at some point in the near future I am going to need a scooter or wheelchair. The other issue that is simply getting worse is my balance. Not a day passes that I do not fall into a wall or something or have to catch myself from falling. I "list" to the right so I am constantly trying to compensate for that.
But again I keep a postitive attitude and my faith is strong. Everyday God gives me to be with my wife and kids is a miracle and I am always very thankful for that.
Lastly I will ask that if you are reading this blog to just leave a comment that says anything, even if that is just, "I'm reading." The reason I ask is that I am hoping to help spread the word about Cerebellar Ataxia and MSA but this blog will have no use if no one is reading it. Thanks again and God Bless. To all my fellow MSA patients thanks for your support. Jeff
I hope everyone had a good day. I had an ok day, stayed at home all day with the dogs and just relaxed. That's just how some days have to be. I did spend more tiime than I should have getting a poll on my blog but finally got it figured out. Please read the poll and vote. Also March is Multiple System Atrophy Awareness Month!! Spread the word and share this blog or others like it. God Bless. Jeff
I want to thank everyone for their overwhelming support. I am asking that those of you with stories about MSA or if you are a caregiver, patient or loved one to share your stories. I, as sure as I would think others, are hungry to know how MSA affects others and their journey. So feel free to share as much as you like here on my blog.
Today was an ok day. I got about 14 hours of restless sleep but still woke up with no energy. However I have set goals for myself on a daily basis so I do not lay in bed all day just wasting away. My biggest daily goal every day is to make sure that my wife knows how much I love her and what a great support she is to me. After that I try and make it a point to get out of bed everyday to at least bathe or shower. I know that doesn't sound like much but some days just getting out of bed is a challenge.
Today I felt pretty good after I got up and showered and actually was able to do a little grocery shopping. However shopping has become very tiring for me and I will only shop if I can find one of the scooters to ride around in. Walking a grocery store, even with walking sticks and or a shopping cart, my legs and body just get to tired. I have been shopping before where I almost just stopped and cried as I was so tired I didn't think I could take another step. Since that time, like I said if theres a scooter available I will shop. If not I either wait for one or go back later.
Thankfully my wife is always willing to go in even if I cannot.
This brings me to a question for many of you. If you use a scooter what do you use? I have not researched any yet but will need one in the near future.
Thanks again for following my blog, God Bless. Jeff
I wanted to share with all of you what my daily symptoms are like and how I get through each day.
Last night for example I had a restless night. I have obstructive sleep apnea and wear a full face CPAP mask so I do not quit breathing during the night. That in itself keeps me a bit restless but my deep sleep is better. Also during the night I had a constant twitching muscle in my left shoulder that I was unable to stop no matter what position I laid in or tried to hold it to stop. So that kept me restless as well. Then this morning my wife told me that my right arm was temoring all night. My brain must be used to that as I did not notice it myself. Funny how your body adapts to things that are uncommon.
Here are the things I live with daily: Twitching muscles, slight tremors, muscle cramps in my arms and legs, weak legs, balance problems and walking issues. I am to the point now when I walk that I list to the right...lol. I also have urinary and bowel issues which are a lot of fun. Daily headaches and cognitive issues. Unfortunately my wife hears me daily say, "I can only concentrate on one thing at a time." Memory loss from one thought to another and my biggest issue right now is pure fatigue.
Now having said all of that life is full of joys and daily miracles. I have a very strong faith in God and my Lord and Saviour Jesus Chirst. My love for my wife and children keep me going every day. And I cherish every moment I can spend with them. People who know me wonder how I an have such an upbeat positive attitude with the future I have been dealt. To me it is easy, I have always, for the most part been a very positive outgoing person. I also believe God never gives us more than we can handle. So I am at peace with the cards that God has given to me. If by creating this blog and sharing my story I can inspire, or put a smile on someone's face then that is enough for me.
Lastly thanks to all of you who are following my blog and posting comments. Tomorrow I plan to answer each comment personally. But for tonight a big thank you to everyone and may God Bless you. Jeff :)
It was the summer of 2002. My wife and I, and our blended family of 8 children had just set down to have a nice dinner. About half way through the meal I noticed that my right thumb was twitching. It was kind of funny actually but at the same time somewhat strange as I was unable to stop or control the twitching. It only lasted about 10 seconds and we just wrote if off to aging.
The twitch in my right thumb never came back until the fall of 2007 after I had undergone some hernia repair surgery. Again it only lasted a few seconds and then stopped. Again we just figured it was part of aging or maybe stress from the surgery.
For the next three years there was no twitch in my right thumb, just some general fatigue, again I just figured it was part of getting older.
In February of 2010 after a long day of work, I laid done to get some sleep and as soon as my head hit the pillow my whole world started spinning. It was a motion from right to left as if I was on some spining amusement ride. This episode lasted a couple of minutes before the spining stopped. At some point during the night the spinning started again I just laid there waiting for it to end which it did. The next morning as I sat up to get out of bed the spinning started again but passed after a couple minutes again. I was off to work and again didn't give it to much thought. Again there were no further episodes of twitching or spinning for the next several months.
In September of 2010 the spinning started again anytime I laid down to get some sleep. However this time the spinning would stop when I stood up, but while laying down the spinning did not go away. This lasted for two weeks. Then one morning when I sat up from a night of restless sleep and spinning, the spinning did not go away. When I stood up that morning it was if I had just gottenn off of an amusement park ride, you know the kind that make you dizzy for a few seconds after you get off the ride. Or like when you were a kid and you would spin around to see how dizzy you could make yourself.
Being a responsible person I got up and went to work the next few days, doing my best to ignore the spinning. Although I could tell co-workers and those around me could tell something was wrong. It was like I was tipsy all the time and I rarely drink. I got into my primary care physician the following week.
Going to that appointment I was a bit concerned as the spinning was still happening although no longer 24/7 but several episodes throughout the day and night. I was starting to think what is wrong. After a complete examination by my PCP he said he thought it was probably an inner ear infection and that is what was causing my balance to be "off". I was confused as he also said I had no ear infection and that my ears looked clear. He referred me to a Ear, Nose and Throat specialist for further examination.
In October of 2010 I finally got in to see the ENT specialist. Over the course of the next two weeks they ran me through every test they had, checked my hearing, balance etc. The results of that testing came back as a slight loss of hearing in my right ear but other than that "mostly normal". However the ENT's final notes stated that he thought it may be some form of "Ataxia" and suggested I get in to see a neurologist as soon as possible.
I wondered what is "Ataxia" and what if I had it. I did a lot of Googling and found out that they're many forms of Ataxia from minima to life altering. Also that Ataxia basically means a loss of balance or being able to put yourself in space so to speak. Meaning your brain cannot place you on a solid surface like the floor.
As the spinning episodes continued I called several neurologist in the Spokane area, only to find out that most of them had a 3 to 6 month wait. I thought how am I going to function at home and in my job with this for the next several months. However after many more calls I found a neurologist who could see me in the next couple days. In the mean time my PCP order a MRI of my brain to see if there was anything going on. The MRI came back as normal except for a couple notes: small hippocampus on both side and that the left hemisphere was slightly smaller than the right. Both those notes are not uncommon for an MRI I was told.
My wife and I met with the neurologist in Mid-October of 2010. As soon as the doctor walked in for some reason I felt uncomfortable with him but thought this is what I have been waiting for. After a full neurological exam I was told, "I can see that you are having some balance issues and slight problems getting up and down from a chair but since your MRI is normal, I feel you are probably just depressed and suggest you go see a counselor." WHAT!! I was so upset that after all I had been though this neurologist says it is probably depression or some sort of mental "somatic" symptoms. Meaning in short that my symptoms were all just made up in my head and were not real.
I had been working at a local hosptial in the Emergency Room while all this was going on and my wife had been a nurse for several years and I just knew there was no way this was "made up." However after a couple weeks of no changes in my health and having time to calm myself down I thought, OK, I guess I will go see a counselor to make sure I am not making these symptoms up in my head.
At the begining of November 2010 I had my first visit with a psyhcologist, refereed to my by my health care provider. The first visit was mainly paperwork and about 30 minutes of just talking. As I spoke with the counselor he asked if I might still be depressed over the death of my newborn baby back in 1982. Unless you have lost a child you can never understand, you never get over the death of a child, you just learn to continue to keep on living. I told him no I was not depressed over my daughters death but will always be hurt by it. At that point we concluded the session. I left feeling helpless and that this counselor was just going to say that all my symptoms were made up due to depression and now some anxitety for not knowing what was going on with my health.
The following week I went back for another session with the psyhcologist. I kept thinking tonight is the night this will all end and I will be told it's all in my head, probably get some anti-depressants and be on my way. But at this point I didn't really care I just wanted the spinning and fatigue to stop. However after more than two hours of talking and answer questions, taking a few "tests", the counselor said,, "Jeff I do not believe that all of your symptoms are somatic (made up) and that he suggested I go see another neurologist and get a second opinon. He did say stress can cause the tremors and some dizziness but not what I had been experiencing for the last two months.
As I should have done the first time and not been in such a rush, I contacted my PCP and asked him for a referral to a neurologist he trusts. He also asked me to come back in since it had been a couple months and he wanted to re-evaluate me. That was fine with me as there was still a few months wait for the neurologist he referred me to.
We are now in late November 2010 and I went a second time to see my PCP. As I sit waiting for him in one of the rooms, my right thumb was twitching uncontrollably. As hard as I tried to stop it in my mind or hold it still, it kept twitching. Then the dizziness took over and I decided to lay down on the exam table to wait for him to come in as I felt as if I was going to pass out. My PCP came in a few minutes later, did a quick exam and said he was pretty sure he was seeing me in the early stages of Parkinson's Disease. Although he wouldn't give me that diagnoses and said to wait until I see the neurologist in March of 2011.
That was still four months away. He did prescribe me some meds, I don't remember what they were but he did tell me to get some over the counter Meclazine. It is for dizziness and it did help me to be able to function and cut down on the number of episodes I was having.
It was a long four month wait but I finally got in to see the 2nd neurologist on March 9, 2011. Again I am nervous as my wife and I wait for the neurologist, as I am thinking what if he also says the symptoms are somatic or made up. After about a 15 minute wait the doctor came in.
He was an elderly thin gentleman with glasses and gray hair. But I was at ease with him as soon as he walked in and smiled and introduced himself. The first neurologist spent about 30 minutes with us, this neurologist was much different. He spent almost 2.5 hours with me and my wife doing a much more thorough exam. Asking questions, doing different tests from head to toe. At the conclusion of the exam he said, "Jeff I am sorry to tell you bu this looks like classic Parkinson's to me." In that moment I was full of fear but yet happy someone finally validated that there was actually something wrong with me and my symptoms were not made up.
The doctor pointed out things I had not even noticed. He asked me if I knew that my right arm was no longer swinging when I walk. I had not noticed that myself. He pointed out other symptoms as well but said when an arm is not swinging and there is no reason for it not to, that is one clue to Parkinson's. His plan was to start me on Amantadine, a drug used years earlier to avoid the flu. However it had been found to help with the early symptoms of Parkinson's. He told me this will be our biggest test as to whether or not I have Parkinson's disease. If you respond to the drug you have Parkison's, if not further testing and brain scans would be done.
Amantadine was truly a gift from God for me. Within days of starting on the drug, I finally started feeling like myself again. The dizziness slowly went away, the tremor in my right thumb became minimal and my balance became better. However my balance was still the biggest issue but over time that agin would slowly get better.
Now the reality set in and my wife and I and our family had to start thinking about the future of me living with Parkinson's Disease. How long could I work and provide for my family? How long could I enjoy time with my wife and kids? And probably a million other things that crossed our minds. The more research I did about Parkinson's the more I realized that there was very little if any Parkinon's specialists in Spokane.
As God an faith have always been a strong part of my life I just prayed that it would all work out for the best. Sometime in the summer of 2011 my wife got a job offer to move to Phoenix, Arizona and become part of a management team for the company she was currently work for in Spokane. As couples do we considered the pros and cons, some of those being leaving our now adult 8 children back in Spokane, finances, and the future of my health.
After some research we also discovered one of the top Parkinson's centers was in Phoenix. All things considered it just seemed like God was lining everything up for us to move to Phoenix.
In October of 2011 my wife and I loaded up a U-haul and all the belongings we could take and said goodbye to our kids and Spokane, Washington. We found a nice rural area to live in about 45 minutes southeast of Phoenix in a town called Queen Creek. That is still where we live to this day.
I had my first appointment at the Muhammad Ali Parkinson's in Phoenix in March of 2012. My wife and I met with a neurologist who ironically used to practice in Spokane. He also brought in a new neurologist that had just joined the center. I expected for them to do an exam and continue to followo me with my Parkinson's Disease.
However after a two hour exam and medical history the neurologist said to us, "We do not believe you have classic Parkinson's." My heart dropped and I thought great here we go again. Two years now and still no definate diagnoses...urggg. I left that appointment feeling down and ready to give up. Thinking I just want them to keep me on the Amantadine and follow me and leave it at that. Of course that was not going to happen.
I was scheduled for another MRI with contrast and a PET scan. All the while thinking, if this all comes down to be psychological I am going to be so upset. Over the next couple months I got the scans done and went back to see the two neurologists in June of 2012. I was half expecting the whole, "your depressed or have anxiety or something but instead what we were about to hear would change our lives once again forever.
As the neurologists reviewed the scans with us he did the good news bad news thing. Don't get me wrong he was very caring and gentle and gave us the news the best he could. He said good news is you do not have classic Parkinson's, you have Parkinson's Plus. What? What is that?, I asked. He said you don't have Parkinson's as most people know it, you have something else that mimics the symptoms of Parkinson's. Ok what is it then. He went on to explain and show us a brain scan an said that what you have is "Cerebellar Ataxia with Probable Multiple System Atrophy."
My wife being a nurse and me being curious had done some research on other diseases that are similar to Parkinson's so that we could be more informed. We had learned about MSA-C(Multiple System Atrophy with Cerebellar Atrophy - features). We also knew that the prognosis for MSA meant a much shorter life span than Parksinson's Diseases. We had lots of questions but most of the answers were, "We just don't know. We will have to wait and see how the disease progresses."
My wife and I along with the neurologists shed some tears together and comforted each other. Leaving that appointment put our life in a spin. How long would I live? What do we tell our kids? Who will support my wife when I can no longer work etc.
The neurologists pulled me off of the Amantadine and put me on Carbodopa-Levadopa 3 times a day. Also some other meds to help with the symptoms.
By June of 2012 I was having great difficulty with my right leg buckling and having more falls. Although I never consider them falls unless I make it all the way to the ground. However my doctors say it doesn't matter if you are falling and grab a wall, bed, chair etc., on the way down, that is still a fall..lol. Anyway in August of 2012 I had a prosthetic technician make a customized brace for my right leg. It goes from my toes up to the top of my thigh and replaces the strenght that my right leg no longer has. I was also told about walking sticks at the Muhammad Ali Parkinson's Center and I use those as well to help with balance. I still use both to this day.
In October 2012 I went back to see the neurologist for another follow up at the Muhammad Ali Parkinson's Center. To my surprise the neurologist who had diagnosed the MSA-C had left for a teaching opportunity at a leading hospital back east. It would now be the new neurologist that had been follwing me with him that would take over my care.
She was very friendly, pleasant and gentle with her exam and personality. She spent about an hour with us and shot some video tape of the exam for teaching purposes. At the end of the exam she stated that she was, "Not so sure if she agreed with the former neurologist that I have MSA." I should have been thrilled right? Instead I was like this is a leading movement disorders clinic in the country and now again we are not sure? As she explained, yes the MRI and PET showed signs of Cerebellar Ataxia and Atrophy but that they had to look hard for it. Meaning that her comments were your tests are not as "obvious" as what we normally see. I just had to remember they are just trying to do the best for me and that there is no cure for either disease and even less known about MSA.
Over the next several months I continued to decline and was set up for physical therapy as well as speech and cognitve therapy. Physical therapy was a help but very tiring but after 3 months I graduated the "BIG" program. A program desinged for those with Parkinson's. I also did speech therapy to help with my difficulties in speech. Which now included stuttering, word finding problems, swallowing and cognitive losses.
At my next appointment at the MAPC (Muhammad Ali Parkinson's Center) on February 14, 2013 things changed once again. One thing was one of the meds I was on to help me sleep was causing hallucinations. So we changed that med. The other major thing is that was the day when my neurologist claimed I was permantly disabled, regardless of the diagnoses. This was very hard for me as I had been working since the age of 13 and now at the age of almost 53, I would no longer be able to work. I was working for Apple LLC at the time and loved my job. I had never quit a job in my life (other than to move to a better job) and it was very hard to call Apple and resign my position.
My thoughts started swirling, what would I do with my time? How would I support my wife and kids? I know a lot of people would love to never have to work again but that was a big part of my life for 40 years. I will admit the first couple weeks were like a vacation not having to get up early, go to work etc. But after that I had to start planning what I was going to do AND be able to do with my time.
I made the decision that as long as I could I would help my wife by taking care of the house, laundry, dishes, dogs, pool, etc. When you have a movement disorder and move slow things take a lot longer than you would expect. An average it takes me 2+ hours to clean the pool or vacuum the house.
By June of 2013 my fatigue became overwhelming and I was not able to do much but take care of the dogs while my wife was at work. But I have always been a leader, a go getter, a push through kind of guy and I would find myself doing the same with this disease. If I had a day I felt somewhat "normal" I would over do what my body really could handle. That meant paying for it for the next 3 or 4 days with little to no energy.
At my MAPC appointment in July of 2013 my neurologist wanted to do some DNA testing to make sure there was not something else going on besides the Cerebellar Ataxia and now "possible MSA." Although my wife and I didn't want to do the testing due to costs, I decided I did want the testing to maybe finally get a definitve diagnoses.
I had one final appointment, for the year, at the MAPC in October 2013. This was a pretty much normal visit as the DNA testing was not back yet. The good news from this appointment was that neurologist said that she had not seen as big of decline between appointments as she had in the past.
My most recent visit to the MAPC was February 2014 to get the results of the DNA testing. Again hoping for some final diagnoses from the results. The DNA testing did yield some answers: That I definitely have signs of two different types of Ataxia. So the diagnoses of Cerebellar Ataxia with Parkinson's features will stand. However the MSA diagnoses will stay at "possible." My neurologist says that is mainly due to still being early in the process. I asked what she meant? how long will I have with my family and wife etc? She stated that if we were to look at a timeline that goes from uphill to downhill that I am still about 1/3 of the way down that mountain and that time will allow us to see what changes occur.
Since December of 2013 I spend most hours of the day in bed due to fatigue. I make it a point to get up everyday to do something so I am not in bed all day.
Sorry for the long first post but I wanted to bring those of you who do not know me up to date on my terminal disease. I hope some of you read this far as it took me most of today to write it..lol. I am sure there are misspellings or grammar errors, but it's all good.
Future posts will be daily or a few times a week talking about my daily life with my health and sharing my faith and how God is keeping me strong and positive.