This is the fifth article on MSA that the Hollywood Republican has been gracious enough to allow us to publish. On behalf of all MSA patients, I want to truly and sincerely thank my friend, Frank DeMartini and the Hollywood Republican for their heartfelt effort to bring awareness to this horrible disease.
I have what my wife calls a “flaw.” I hate to see anyone in need and apparently I don’t have the ability to say no to anyone who asks me to do something for them. Because of my MSA, I have attempted to defer some of what I do, but this week I agreed to be in a situation that was not the best choice for my health, and therefore, this week has been very challenging for me and unfortunately, my wife in turn. I had hoped to be able to report this week that I had achieved one of my biggest goals, to purchase a house for my wife so when I am gone, she would no longer have a mortgage. I had everything in place, including the closing date scheduled on April 28. For those of you that have followed this entire series, you may remember April 28 was one of my “Three Dates”. April 28, 2010 was the day I was given my life sentence with MSA. I was so excited thinking that April 28, 2011 could be a great day with one of my major goals completed. Unfortunately because I can’t say no, I was not able to attend the closing, and it has been postponed until late next week. I have to work on that.
I believe to do justice to making awareness of MSA, it will take more than me. Shortly after I started posting updates on Facebook and Miracles for MSA in particular, I was contacted by Lori and Dennis Jakeway. There are several types of MSA. I have MSA-P which starts with autonomic dysfunction. Dennis has been stricken with MSA-C. Below Dennis and Lori’s story of their journey with MSA.
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Dennis and his dog Storm
Our story starts much like a lot of those with MSA. My husband was 43. He felt like he had the flu. The problem was, it wasn’t going away. Dizziness, achy, and joint pain was the start. Something wasn’t right. Over the years, he had gotten used to the aches and pains of being a flooring contractor. But this time it was different. After a few months of this, I finally convinced him to see a Doctor.
The first doctor told us he couldn’t find anything in the blood work or the spinal tap he completed. He told my husband to make an appointment in 6 months. We were not happy with the lack of urgency since we were seeing a steady decline in his symptoms. By this time, he had started to have balance issues. This led the doctors to check the inner ear. Of course, they found nothing. We then went to another Doctor that told him he had lesions on his brain and a shrunken cerebellum but, she thought it was from living a “hard life”. Now, let me explain, my husband was a musician and probably had his share fair of fun, but he did not have a drug or alcohol problem. He continued to have blood work, MRI’s, and another spinal tap. Still , after all this time and money, no diagnosis. This doctor actually told us that he may have used up his body’s reserve and now he was paying for it. The funny thing is (not so funny really) that we have a friend that had mentioned, months before this, their mother-in-law had similar symptoms to Dennis’ and she had went to Mayo. She was diagnosed with MSA. At the next appointment, naturally, I asked the Doctor about the possibility of MSA. Now, by this time, I had read up on MSA and was hoping and praying that this was not the diagnosis we would find. The Doctor told us that they did not believe MSA was a possibility. Needless to say, we were frustrated about not having a diagnosis but, I was very happy that it wasn’t MSA……
Month after month we continued to see a decline and the Doctor’s still could not tell us what it was. We did not give up though; we were determined to find out what it was. So, at the suggestion of my husbands’ Mother, we went to yet another Neuroscience doctor (the third one…if you are keeping track). He looked at the previous two years records and decided to do another type of MRI and one more spinal tap. And yes, more blood work. Now my husband had already said, “I am not doing another spinal tap”. He was tired of being poked and prodded. Not to mention, the last spinal tap had him back in the hospital two days later with a severe head ache. And I don’t blame him but he conceded and did follow the doctor’s recommendation.
Now, when we went in for this consult, things were a bit different. As he walked in the room, he looked at my husband and said, “We need to talk”. My heart felt like it dropped to the floor. He continued, and I quote, “your cerebellum is shot”. This is the first time we were told that there was evidence of what was causing the balance issues, slurred speech, and multiple other issues he had been experiencing. This was also the first time that we were actually given a name of something to go research. OPCA (Olivoprontocerebellaratrophy). WOW what a mouth full right? So I started looking this up and that is what led me to MSA (http://www.alyshia.com/OPCA/name_article.pdf), once again. The doctor admitted that he did not know that much about this condition and wanted us to get a second opinion.
We were then referred to, yes…. you guessed it, another neurologist. This was the first doctor to mention the words MSA to us. While he was not 100% sure, this diagnosis had topped his probable list due to the sleep disorder that my husband had developed (www.mayoclinic.org/rem-sleep-behavior-disorder). Oh, I forgot to mention that, he was kicking, screaming, and punching, from time to time, during sleep. Talk about a rude awaking…. The doctor did some genetic testing in an effort to rule out any genetic forms of OPCA that were hereditary and of course, they were all negative. It looks like he had it right. MSA was what we were stuck with. We were told that sometimes, unfortunately, it is a matter of ruling other things out, not finding a positive test that would rule something in. While this was not the outcome we were hoping for, obviously wanting it to be something they could fix, at least we knew we weren’t crazy. This doctor did put it in perspective when he said, “no matter what the label is. It would likely not change the outcome.”
My husband just turned 48 years old this March. He has always been a very active person. He played drums, golf, loved to draw, dance, and lots of other things that just don’t happen for him now. He doesn’t work anymore, and I must say, that has been one of the biggest adjustments. Although we continue to see his body fail him, we feel blessed that, compared to other patients, his decline is a bit less steep. He still gets frustrated at his body when it doesn’t cooperate but we are thankful for the mobility and the function he still has. We are still learning to take it one day at a time and sometimes have to remind ourselves to appreciate every moment.
We were fortunate enough to put on a benefit for my husband last year that raised enough money to put our yellow lab through training to be a mobility/service dog. We just got Storm back after 8 months of training and are excited about having the helping hand around the house. Retrieving dropped objects, providing stability when walking and companionship are just a few of the rewards of having him around. The generosity and thoughtfulness of those around us has truly been a blessing.
The love and support of our friends and family has gotten us through some very tough days. We have been blessed to meet some great new friends as well. Thank you to you all! God Bless!
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Please continue to leave comments at the end of the articles and we will reply to them. To get more information on this deadly disease, please visit these sites:
on Facebook:
Miracles for MSA
Life with MSA
Where is Tim’s Shoe
You can participate in the research for MSA by sending your tax deductible donation to any of the following organizations:
Greene Giving
Hope for MSA (in the Memo line)
c/o Frank Cervone
380 Bellaire Dr.
Fairborn, Ohio 45324
National Ataxia Foundation
2600 Fernbrook Lane Suite 119
Minneapolis, MN 55447-4752 USA
Shy-Drager/Multi System Atrophy
8311 Brier Creek Parkway, Ste. 105-434
Raleigh, NC 27617 USA
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I am Dennis and Loris mom,and my heart goes out to them,but I want to say Thank GOD for Lori,she is going through a lot and there for my son,and I feel so blessed they found a friend in Frank,and they are trying to get the info.,on this horrible disease out there.These testimonies will help a lot of people,and praying they will come forward and tell their story.Praying for you all.
Sandy,
It was an honor meeting Dennis and Lori. It’s people like them that give me the strength to continue on this quest.
Frank
My dad was diagnosed with MSA 4 years ago. Funny I’m sitting in the hospital with him right now and happened to come by your article on facebook. I commend you for your fight. My dad always taught me to fight until there’s no fight left. To this day my father continues to fight. Not for himself so much anymore but for me and my mom. God bless you and may the Lord hear our prayers
Jamie,
I am so sorry to hear your Dad is hospitalized. I pray God is holding him in his caring hands. I understand your Dad’s effort to continue to fight for you and your Mom. I am doing the same for my family. I am very tired, and could easily give up and ask God to let me rest from this journey, but I know the devastation that will follow my death and my family will have to live that it, so it makes me continue to fight.
I will also pray for you and your Mom. I know how weary you both are as I see it in my wife’s eyes. You will never know how much your Dad appreciates you. He may fuss and fumble, but believe me, as someone who also suffers from MSA, the caring you give him means more to him than anything in the world.
Please let me know if there is anything I can do for you as you suffer through this journey with you Dad. You are a blessing to him and both of you will be rewarded in the end.
Frank Cervone
My name is Mariana and i live in Greece… i am sorry if my English is not so good. Ι realy know what a big battle for the patients with MSA and their caregivers is trying to deal with this condition.My father is 57 years old and i could see that something was going wrong special with his speech since last November.Ι forgot to mention that my parents are divorsed and my father lives in Portugal and my mother in USA .I am their only child and and even i am 30 years old and married in Greece my relations with my parents were always perfect they support me in all my life and they were always next of me.So as i mention above i could see something was going wrong with my father because we was talking almost every day on skype and i could see how dificult it was for him to speak with me .I insisted many times to tell me what is going on but my dad always wanted to calm me down telling me not to worry its nothing serious.On January things was going from bad to worse i was watching my dads situation going bad day by day so he was forced to tell me the true..he knew it already one year that he had MSA-C but like almost all parents do he didn t want to worry his daughter.In the bigging i didnt knew anything about MSA but as i was reading more and more on the net i was getting more and more dissapointed .I didnt know what should i do i was socked knowing that my father has this awful sickness and there is not any cure ….nothing to do.I got so worry i couldnt see my father in this situation .I was crying every day feeling really lost knowing that i cant help him.My mom was next to me all this dificult time trying to encourage me .From janyary that i was told from my father about MSA i spent hours and hours talking with my mother on the phone (she lived in USA).But life sometimes plays strange games.On 6 of April the phone rang very late in the night .I was sure something bad happened with my father but i was wrong.The phone was to tell me that my mother died from hard attack.I pain so much i am really lost, but all this tought me something.We never know what life brings and we must not loose hope only pray.And this moment i am praying for a MIRACLE OF MSA. I know my mother prays with me for my dad .I love you daddy we will fight together and i am optimistic that soon there will be a cure ….i want you with me….
We added a link to your MSA article to our website. Thanks for helping to create awareness about Multiple System Atrophy (MSA).
My twin sister was diognosed with MSA 2years ago but was sick for two years before they figured out what she had. I am now her main caregiver. she,s gone to a scooter walks very little by herself now. Its just sad they cant find out the cause. Its hard to watch your love one go through this.
My husband was diagnosed in 2007 with MSA after four years of being shunted from one specialist to another, all of whom said he was having TIA’s. While visiting children in Huntington Beach, CA he was taken I’ll and was admitted to Hoag Hospital in Newport Beach. The next morning a neurologist assigned to his care told mne about MSA and that he felt that was the diagnosis. For the next three years he was available to us at any time to answer any questions or give advice. Last year we had to move to Fresno CA to be near most of our kids (his and mine). Our care here has been adequate so far. My husband has been admitted to the hospital every 3-4 months since his diagnosis. He is 81 and has developed dementia also which is a complicating factor. His blood pressure is unstable at best and he requires 12 mess before he can get out of bed in the morning. As his caregiver I am delighted to find this site for my own support. I will also look into the Facebook site too. There does not appear to be any support group in Central California, and as you know this can be a very lonely illness for patient and caregiver alike.
My father passed away from MSA in November of 2009. Going through this disease with him changed me in many ways. Seeing the pain in his eyes when people treated him like he was brain dead toward the end, and going through the endless list of doctors that had never heard of, or treated anyone with MSA were a couple of the hardest things for both of us, not that that list can’t be added to hugely, there is nothing easy about this disease. I would love to see something done about the fact that doctors are not trained to diagnose and recognize this disease for what it is. I feel heartache for anyone facing this disease, but hope that someday we will have a cure.