Through the Eyes of a Loving Wife - Miracles for Mike
[if gte vml 1]><v:group id="_x0000_s1027" style='position:absolute; margin-left:14.8pt;margin-top:201pt;width:152.75pt;height:94.5pt;z-index:2; mso-wrap-distance-left:12pt;mso-wrap-distance-top:12pt; mso-wrap-distance-right:12pt;mso-wrap-distance-bottom:12pt; mso-position-horizontal-relative:page;mso-position-vertical-relative:page' coordsize="3962414,2705109"> <v:shapetype id="_x0000_t75" coordsize="21600,21600" o:spt="75" o:preferrelative="t" path="m@4@5l@4@11@9@11@9@5xe" filled="f" stroked="f"> <v:stroke joinstyle="miter"></v:stroke> <v:formulas> <v:f eqn="if lineDrawn pixelLineWidth 0"></v:f> <v:f eqn="sum @0 1 0"></v:f> <v:f eqn="sum 0 0 @1"></v:f> <v:f eqn="prod @2 1 2"></v:f> <v:f eqn="prod @3 21600 pixelWidth"></v:f> <v:f eqn="prod @3 21600 pixelHeight"></v:f> <v:f eqn="sum @0 0 1"></v:f> <v:f eqn="prod @6 1 2"></v:f> <v:f eqn="prod @7 21600 pixelWidth"></v:f> <v:f eqn="sum @8 21600 0"></v:f> <v:f eqn="prod @7 21600 pixelHeight"></v:f> <v:f eqn="sum @10 21600 0"></v:f> </v:formulas> <v:path o:extrusionok="f" gradientshapeok="t" o:connecttype="rect"></v:path> <o:lock v:ext="edit" aspectratio="t"></o:lock> </v:shapetype><v:shape id="_x0000_s1028" type="#_x0000_t75" style='position:absolute; left:63500;top:38100;width:3835414;height:2540009'> <v:imagedata src="file:///C:\Users\Donta\AppData\Local\Temp\msohtmlclip1\01\clip_image001.jpg" o:title="IMG_1296" croptop="131f" cropbottom="131f"></v:imagedata> </v:shape><v:shape id="_x0000_s1029" type="#_x0000_t75" style='position:absolute; width:3962414;height:2705109'> <v:imagedata src="file:///C:\Users\Donta\AppData\Local\Temp\msohtmlclip1\01\clip_image002.png" o:title=""></v:imagedata> </v:shape><w:wrap anchorx="page" anchory="page"></w:wrap> </v:group><![endif][if !vml][endif]Mike was diagnosed with Parkinson’s Disease in June, 2014. He had gone to his family doctor for a wellness check-up and came out with an appointment to see a neurologist. How quickly life can change. After a couple of visits to the neurologist and a DAT scan the Parkinson’s diagnosis was confirmed. At first the medicine prescribed worked. But within three months the symptoms returned and the medicine seemed to not work at all. His eyes would cl[if gte vml 1]><v:rect id="_x0000_s1026" style='position:absolute;margin-left:50pt;margin-top:437pt;width:138pt; height:59pt;z-index:1;visibility:visible;mso-wrap-distance-left:12pt; mso-wrap-distance-top:12pt;mso-wrap-distance-right:12pt; mso-wrap-distance-bottom:12pt;mso-position-horizontal-relative:page; mso-position-vertical-relative:page' filled="f" stroked="f" strokeweight="1pt"> <v:stroke miterlimit="4"></v:stroke> <w:wrap type="square" anchorx="page" anchory="page"></w:wrap> </v:rect><![endif]amp shut for no apparent reason. Because of this we saw a neuropthamologist. The ongoing symptoms combined with the eyes clamping shut the diagnosis now became Parkinson’s plus PSP (Progressive Supranuclear Palsy). We asked what this meant and she said two to five years. It felt like someone had punched us in the stomach and sucked all the oxygen out of the room. We left with a sense of shock and urgency to find out more about this disease called PSP. Mike had began to change.
Our daughters had been noticing a change in their dad. His face had a “masked” appearance with very little emotion. His eyes began to shut more often, for longer periods of time. Our granddaughter, Caroline, would say, “wake up Poppy.”. He would assure her he was awake. She wasn’t always so sure. His emotions were all over the place. This was hard to understand.
He was always a very calm man but now would cry or get angry quite often. It was like he could not engage in life. His writing had become so small and almost illegible.
After his PSP diagnosis we scoured the internet for any and all information we could find. Of course, everything we found was bad news. This was very disheartening. No treatment, no cure. We did find hope on the CurePSP website. There we found support group information, research information, and other caregiver’s testimonials, all of which helped us a lot.
Mike did learn early on that he had to keep moving. His rigidity was becoming bad very quickly, so he was determined to keep moving. He walks on a treadmill every morning. It takes about a mile before he gets limbered up and gets his stride in order. He also does lots of floor exercises and stretching. He has become very regimented in his daily routine. This seems to be very common in most PSP patients. Rest has become very important as well. All of this along with his medicine has kept his depression at bay. It was very hard for him to admit he needed help with depression but we as a family knew he was becoming more and more depressed. After trying a few different antidepressants, Mike has found the one that works for him and he can smile again.
[if gte vml 1]><v:shape id="officeArt_x0020_object" o:spid="_x0000_s1031" type="#_x0000_t75" style='position:absolute;margin-left:21.75pt;margin-top:126pt; width:169.5pt;height:215.25pt;z-index:3;visibility:visible;mso-wrap-style:square; mso-wrap-distance-left:12pt;mso-wrap-distance-top:12pt; mso-wrap-distance-right:12pt;mso-wrap-distance-bottom:12pt; mso-position-horizontal:absolute;mso-position-horizontal-relative:page; mso-position-vertical:absolute;mso-position-vertical-relative:page' strokeweight="1pt"> <v:stroke miterlimit="4"></v:stroke> <v:imagedata src="file:///C:\Users\Donta\AppData\Local\Temp\msohtmlclip1\01\clip_image004.jpg" o:title="" cropleft="13365f" cropright="13365f"></v:imagedata> <w:wrap anchorx="page" anchory="page"></w:wrap> </v:shape><![endif][if !vml][endif]His looks have changed a lot this past year. He has the blank stare that most PSP patients have. Sometimes I find him looking at me as if he’s trying to find the words to say. Other times he’s just sitting and staring at the TV. I’m not always sure he’s truly watching it or not. The silence is very loud in the evenings. I miss our conversations. I miss him. I am trying hard to not ask him what he’s thinking because I can see this is sometimes upsetting to him. I don’t know if he knows what he is thinking.
His medicines seem to work effectively for about three months at a time. His writing will go back to normal. His thinking seems to become a little clearer. His energy level picks up. He sleeps better. Then after a few months we have to find a new cocktail that works. He is progressing. We know it is inevitable, but this doesn’t make it any easier.
The doctor ordered physical therapy shortly after he was diagnosed. He went two or three times per week. This didn’t help. The therapist admitted that he had no experience with PSP. It was hard to watch Mike struggle just to open a clothes pin and hook it onto the side of a bucket. He has always been a strong construction worker. He could lift anything that needed to be lifted. This has so quickly changed.
Swallowing is becoming an issue now. His medicine is getting stuck in his throat, as well as meat. His doctor has ordered another swallowing test to be done within the next few weeks. As well as an appointment with a speech therapist. We are concerned he may begin choking and aspirate.
His rigidity is becoming worse with each passing day. Especially in the lower rib area. The neurologist says this is impairing his lung function. She has ordered a lung capacity test to be done.[if gte vml 1]><v:shape id="_x0000_s1030" type="#_x0000_t75" style='position:absolute;margin-left:-180.75pt; margin-top:14.6pt;width:141.9pt;height:189.95pt;z-index:4;visibility:visible; mso-wrap-style:square;mso-wrap-distance-left:12pt;mso-wrap-distance-top:12pt; mso-wrap-distance-right:12pt;mso-wrap-distance-bottom:12pt; mso-position-horizontal:absolute;mso-position-horizontal-relative:margin; mso-position-vertical:absolute;mso-position-vertical-relative:line' wrapcoords="0 0 21600 0 21600 21600 0 21600 0 0 21600 0 0 0" strokeweight="1pt"> <v:stroke miterlimit="4"></v:stroke> <v:imagedata src="file:///C:\Users\Donta\AppData\Local\Temp\msohtmlclip1\01\clip_image006.png" o:title=""></v:imagedata> <w:wrap type="through" anchorx="margin" anchory="line"></w:wrap> </v:shape><![endif][if !vml][endif] This tightness keeps him from standing up straight and interferes with his breathing some. He tends to lean over more and runs into door casings. So he uses a cane to balance himself and guide himself through doorways. His depth and width perception is off, so for this reason he no longer drives. He cannot keep the car in a lane. He reluctantly knew it was no longer safe for him to drive.
So far Mike doesn’t need constant supervision. Our friends do check on him during the day so I can continue to work full-time. He has begun to forget to take his afternoon meds and also to eat lunch. I have set alarms on his phone to remind him of these things. For now this is working, but we know the day is coming soon when we will be looking for a care-giver to come in and sit with him while I work.
PSP is slowly stealing the man I love from me.
I/we are fighting hard against this giant. We have been together since high school and he is the love of my life. I miss him more each and every day. But I will not let him go without a fight. We pray continually for a cure for this horrific disease. We also pray for divine intervention. Until that day comes we choose joy for each day. We treasure each and every moment. We are thankful for CurePSP and all they do to help families like ours fight this ugly disease. We thank each and every person that donates to CurePSP for more research to be done. This brings us HOPE.
With hope and joy,
Pam Sweeney
