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.
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!
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:
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:
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