I haven’t written in the journal much lately. I’ve been really “off” lately but I’m not going into that tonight. This is Doctor Week – neurologist, movement disorder specialist, Spect scan, and Sam the Dog is getting fixed!
Instead I am overcome with the generosity of others. It all started when an anonymous friend bought me a watch with multiple alarms so that I would remember to take my meds. It vibrates – I won’t even go into what my doctor said about that. Then, our friends loan us money to buy a car – friends who weren’t close to us until recently. The social worker at school even called to see if we had food for Thanksgiving. I explained to her that we did and Siobhan had even taken some of our extra money and bought a turkey for the local food bank.
The other day the front doorbell rang. When I answered the door it was a woman (that I did not know) who’s child went to the same school as my daughter. She explained how she and her husband were going through difficult times and she had received two Christmas trees. She wondered if there was anything she could do for us and if we wanted the Christmas trees. She invited me to her church’s Wednesday night prayer group and said she would pray for me. We chatted for about 45 minutes and discussed each other’s needs. I don’t know how she found out about us but I think Sara’s teacher had a lot to do with this.
Sara’s teacher, Mrs. Infante asked my wife what we needed and Siobhan discussed with her the children’s wish lists for Christmas, the need for a downstairs bathroom and what we could afford and what we couldn’t. Sara had requested 2 gifts that would have been no problem to purchase in the past but was out of our realm this year. Mrs. Infante went on to tell Siobhan not to worry but she will make sure Sara gets these gifts. Siobhan had also mentioned to her that our friends were having a fundraiser for us in January (the same ones that loaned us money for the car). Mrs. Infante wanted flyers to hand out and mentioned that people in her family were in the construction business.
Sue Dorfman, a local doctor’s wife and mother of a classmate of Sara’s called next. She kept asking what we needed and modestly we replied “nothing”. She called again the next day to ask the same question. Her father has cerebellar ataxia and grandmother had ALS so she new what we were going through. Again, Mrs. Infante had filled her in on our situation.
Saturday, Sara went out to the mailbox to collect the bills and at the bottom of the stack was an envelope with “Merry Christmas” written on it. I told Sara to open it and inside was two $25 gift certificates to an electronics store. We gave one to each child as we wondered who this wonderful human being was.
When I greeted Sara at the door after school today she said, “One of the kids at school said there was a letter sent home about you.” I knew her teacher was up to something again because she had called earlier in the day looking for Siobhan. As Sara was walking through the door Siobhan was talking to Mrs. Infante at school. I asked Sara if she was upset because my condition has weighed heavily upon her little heart lately. She does not display bad feelings but lets them eat her up inside like her father and her grandmother. She smiled, replied “no”, and asked when she could have the computer.
Siobhan walked in the door with eyes filled with tears yet she wouldn’t let them come out. Mrs. Infante had sent a letter home to the parents of her classroom and the classroom next door. She was collecting money and had also managed to get Sara the American Girl doll she wanted. She is going to send the letter through the whole school. My pride first sank into my gut then it rose into my heart. Siobhan and I had mentioned that it’s either Christmas this year or the mortgage. Christmas won out although the two of us were not going to exchange gifts because we had to pay some bills with my next check as well (the cable was shut off today.)
I had given up on people close to us when complete strangers came to the rescue restoring my faith in mankind. I was starting to become so hardened that I believed the only people who cared were my fellow PD’ers. Maybe God was paying us back for all the years we had given to charities, for last Tuesday when I spent the morning finding toys for some needy friends’ children, and for the turkey Siobhan bought for the food shelter with part of little money we had left to hold us for another week. I know all of us PD’ers aren’t religious folks but let me tell you one thing – God works in mysterious ways and we can never ever think he has given up on us. I have kept my faith in tact. Siobhan and I vowed never to blame Him for our misfortunes. I have one suggestion that I want to leave all of you – when you go to bed tonight don’t pray for yourselves but for the others who have greater needs. We all know a family or several families worse off than we are. It is in this that He rejoices – our love for our fellow man.
I have bad news and nice news today. The doctor’s wife who I mentioned in this mornings post has “found” and electric chair lift for me. This will enable me to get up the stairs into by own comfy bed. Details are not worked out yet because Siobhan had to run Aidan to the doctor. He probably has another ear infection. My neurologist confirmed the fact that I have a Multi System Atrophy. It was heart wrenching to hear the words come out of his mouth. He would not say it before because he wanted to see if I would remain stable on Requip. I’ve had bladder and swallowing problems, sleep apnea and hyper reflexes which all point to Striato Nigral Degeneration. He really doesn’t know which one it is. It really doesn’t matter to me. Treatment remains the same as well as the outcome. A few weeks ago he mentioned in confidence to Siobhan (we tell each other everything) that I probably have 2 to 3 years left. Today he told me 5 to 6 years was my lifespan. He seemed very disturbed by this - almost upset. He told us that this was his first personal case and probably over his whole career he will probably not see more than 5 or 6 people pass through his office with MSA.
Those of you, who know me well, know that I rarely get depressed. I have to admit that today I am depressed. He dictated a stinging letter to Social Security stating my condition. He questioned how they could deny me disability at his point and stated he could not see how they expected me to work at all let alone live a decent life. He put emphasis on fatigue, hallucinations (tarantulas seem to be the theme), bladder and bowel urgency, weakness, severe pain, severe cramps, inability to stand, inability to walk as well as several other symptoms. He even mentioned tube feeds in the letter.
We talked about a CPAP machine for my sleep apnea, a barium swallow test, seeing an urologist, finding a better-educated and caring general practitioner, and increasing the Requip. My appointments are now longer every three months but are on a monthly basis. We spent two hours together talking about plans for the future and management of the disease. One step at a time we agreed.
I will remain strong and put my faith in God. I still must “provide” as best I can for my two young children and my wife who is “putting” on her tough “skin”. Next test is Friday - a Spect scan. It should be interesting. God Bless!
One more entry for the day - a humorous one.
My wife was telling her sister about my doctor's appointment today. Her response - "He looks good to me." ARGGGH
“December 11, 2000
Dear Fair Weather Friends,
It was so nice to hear from you – we thought you (select one) had moved to another state/country/were all dead! My, your families all lead such exciting lives (YAWNNNN) that we are speechless. So speechless that all we can say about ourselves is that we are happy and the children are great. You have out done us in every aspect so we won’t even mention our achievements. The cat with the hairballs – that must have been scary! The new black sporty Saturn – I hope it gets good gas mileage with the price of gasoline these days – Ho Ho Ho! Your children are truly remarkable – is (select one) Albert Einstein/Beethoven/Babe Ruth in your family tree. You sure did travel a lot this past year – we drove up to the big shopping mall 30 miles away from home and did we have fun. To bad you couldn’t drive the 15 miles to our summer picnic. Oh well, we had a great time anyways. It couldn’t have been as fun as the 600-mile trip to visit your in-laws. With all those increases in pay, job promotions and “offers you just couldn’t refuse” you must be rich. Why are you still living where you do? Are you children in private schools or just in an excellent public school system like mine? I know you won’t answer these questions because we probably won’t get around to hearing from you until December 2001. I love the note about us calling you as we have and we did when we received your beautiful card. I got your answering machine (as usual with no return call – it must not be working properly) and I was delighted to talk to you when I tried for the fourth time this past week. I’m sorry you’re “so busy” that you haven’t had a chance to call. It must be hard on your other friends as well. We do live all of 15 miles away so I can understand why you haven’t come to visit while Tim has been pretty much cooped up in the house (except when we go shopping!) Well, you certainly paint a picture of yourself as one remarkable family – please save the postage next year! All our best. Hope to see you (select one) soon/in this lifetime/in the afterlife/next time we’re at the big shopping mall!
The Foley Family
cc: All those friends who appeared out of nowhere when you decided you "were too busy" so they can have a good laugh too!
No Return Address - we hope you forget to send us a card next year as your sincerity is highly questioned and your family is actually quite boring.”
And yes they did write about the cat having hairballs - Hey two of my dogs were neutered this year - now that must hurt!
The Holidays are fast approaching and I can feel them trying to gnaw away at my Cheer and Goodwill. It’s like old Ebenezer Scrooge is trying to “exorcizing” his rights and take over my spirit of Christmas Present. Between my Sara being sick and out of school and my own little battle with pain being never ending it’s hard to enjoy the Holiday’s but we will. Looking forward to surprising my father – he thinks we’re arriving in Vermont the day after Christmas. Then we’re going to drive 5 or 6 hours to finally visit Nan in person. Unless something fantastic happens or something funny I probably won’t be journaling until after New Year’s because we’ll be away for so long. I want to thank all you readers for providing all the moral support during the recent MSA diagnosis. If you think people don’t understand when one has Parkinson’s, try telling them you have Multi System Atrophy. Had to explain it to my general practitioner today after calling him because my blood sugars have been skyrocketing again. So we added another pill to my daily intake – over 20 pills a day. Those little buggers are starting to play around with my system – Requip helped me gain 40 pounds, Vioxx, which I just started taking for pain, had my legs swelling up like balloons, and the Zanaflex for the severe muscle spasm makes me fall asleep at the keyboard. Feels like I’m back in Pharmacy school nodding off in lecture hall.
For excitement this week I have to get a ride to go get Siobhan and the kids a little something for Christmas, go to the Movement Clinic on Wednesday to view my pictures of my dopamine spect scan, and go to speech therapy which is just about the most boring thing in the world. Last week was my evaluation and I had to swallow worm pudding and dry graham crackers, perform memory tests, and pronounced all my vowels and yell at the speech therapist. The memory tests crack me up. You do well on them because you’re so focused. In real life the slightest little distraction throws you off. I’ve been complaining a lot about my memory and both the neurologists say it’s not the meds but part of the MSA. If I have to “multitask” forget it – good thing Bill Gates doesn’t want my input in “Windows ME version 2.0”. I haven’t left the dogs out but I can’t remember who called on the phone during the day. If Siobhan goes out I don’t bother to pick it up because when she gets home and asks if anybody called she isn’t too happy with “Yes, somebody did.” I haven’t got any more letters in Christmas cards from friends I don’t see anymore BUT..
I started writing this when my wife informs me the folks that sent us the letter in the Christmas card are coming over. A little guilt works once and a while – must have been the messages left on the answering machine. The Ladies Division of the Ancient Order of Hibernians (an Irish Catholic society) dropped off about 10 bags of groceries and gifts tonight and we were told to expect more after their Christmas dance this evening. A surprise is what we all needed today. I haven’t received so many Saint’s prayer cards since the spelling bees in grade school. God Bless them.
My neurologist called to chat with Siobhan for about an hour tonight to make sure she takes care of herself and that she is prepared for the future. He says that even for MSA things are going very rapidly. He didn’t want to talk to me - probably to prevent me from getting down. It’s been 3 weeks since last med change and I’m due. We’re stopping Requip due to incredible weight gain and switching to Permax. I can’t type anymore due to cramps and pain – time to get my “Voice Express” program up and running again.
On Wednesday, I paid a visit to Dr. Marek in New Haven to hear about my Spect Scan. At out last visit he confirmed my Neurologist diagnosis of MSA. “Obviously it's some sort of Multi System Atrophy” were his words. I had all the signs of PD plus some extra added bonuses. The fact that I respond to Sinemet was a clincher in his opinion. [Word of Caution - The following may or may not shock some of you - Movement Disorder Specialist are like other Professionals - there are good ones and there are bad ones - they are human beings.]
Let me go back one day. Dr. Anthony called Siobhan Tuesday nigh to “prepare” her for the future. Now I know what some of you are thinking, “How morbid”, “How can he do that” and other assorted comments. My wife was a long-term care nurse for most of her career. Prior to that she worked in acute care as well with patients with hepatitis, HIV, and tuberculosis. She's seen quite a bit and knows what can happen. He did not upset her. What he was telling her was to make sure to take time for herself because someday she may be spending more time at home than she cares to.
Back to Wednesday - We get to the MD's office and explain to him any recent developments. He checked my rigidity, gait as well as the tremors, which have gotten worse. After all that he pulls out the sect scan results - I have little or no change in dopamine neurons in my brain. You don't have MSA he replied, “I don't know what you have”. Siobhan said, “ Last time you said that Tim clearly clinically presented as having MSA”. Marek affirmed his remarks. So now your saying you take that all back because of a research study. (We both thought that was the idea of research - not to diagnose but to learn) He kept saying he had no idea what I had but offered no support - We were both ready to stick his clipboard up his Merry Xmas butt and walk out and leave. We were polite. He told me all y problems are probably a result of depression. I AM NOT DEPRESSED- I REPEAT, I AM NOT DEPRESSED. I have been down that road in my life years ago and I have too good of a time now and such a clear perspective on life that I know I'm not depressed. In depression thoughts tend to be cloudy, my thoughts are as clear as day - sometimes they just take longer to come out of hiding.
I RESPOND TO SINEMET - I wanted to write on his walls with black El Marko marker. I have been seen by 5 other neurologists who all agree that I have a Parkinsonism and you think I am going to listen to you. I have thrown your test data out of order if you say I have MSA, but if you dismiss it as “No idea what you have” then you research results are not flawed. I met a woman at my support group who went to him, had the spect scan and He said, “ No you don't have PD because my research results tell me so”. She went to two other neurologists who stated she clearly did.
I have a group of the finest neurologists in this state as well s several other neurologists who say I have a Parkinsonism - I AM NOT GOING TO GET AN EIGHTH, NINTH, AND TENTH OPINION - do I got to one until they tell me something like Mr. Foley “You have a thorn in your foot - I think if I remove it you will be OK - that will be $250 dollars charged to your insurance company.” Folks, majority rules in this game - I can't go hunting to hear “good things. I have MSA and accept that. It has not changed me although constantly worry about my family and their future. I accept MSA as my diagnosis and now I have to get on living. The kids are excited about Christmas so bring it on!! Unfortunately I will have to watch Midnight Mass on TV as I wouldn't make it through Christmas Mass with the Church crammed with what we Catholics call C ∓ E'ers, those that only come to Mass on Christmas and Easter.
One last happy note, We got out of repossession of our house with the help of Sara's teacher - God Bless her. We were still behind in November and December's payment. Siobhan got the mail yesterday and in it was $1000 from someone we do not have any connection with at all. They live in the Greenfield Hills section (Multi Million dollar mansions) of Fairfield, CT and had heard about us from someone who knew someone - now we only have to come up with this month's payment, which should be no problem. There are wonderful people out there!
Unless something amazing happens between now and Monday, I will not be journaling as I am preparing an online family photo album. Then we are off to Vermont Monday to surprise my father who is trying to be strong this Christmas without my mother although this tough 240 pound Korean War sergeant broke down and started to cry to me last night. He said he “bawled like baby” that morning. Then, weather providing, we should be off to visit Nan and meet her in person for the first time at the end of the week.
I thank you all for your support throughout the year. My family and I wish you all a very Happy Holiday Season, Merry Christmas, and the warmest good thoughts for the New Year!! God Bless!