December 2012
HO…HO…HO…Merry Christmas! Doesn’t it seem too early to be saying that?
Like every year 2012 has been a busy one for the Metz Family! Though we didn’t have any big adventures we took many short excursions throughout the year. We filled our summer months with a stay-cation in our back yard pool – it really made those ninety-plus degree days fly right by! (And also really helped on the days the air conditioning was broken!)
In June we celebrated my niece Pam’s wedding and in September we took a mini-vacation to see my sister Jeannie and family in Washington, DC. We were lucky enough to visit during my niece’s birthday party and had a relaxing weekend away. On the way down we stopped in Bedford, PA to see the Espy House. Now a candy/gift shop, the house was built in 1771 by my 8th great Uncle and was used by George Washington as headquarters in the Whiskey Rebellion. Rumor is that President Washington even ate Thanksgiving dinner in the house!
In theme with our stay-cation the girls discovered a new love for drive-in movie theatres. We also visited local attractions such as Swings-N-Things and Cedar Point. Talk about a difference in a year. Last year we did four days in ninety-plus degree heat at an amusement park – this year we barely got through one! Days like this can take their toll on Jim – last year he barely rode his scooter on our trip and this year that was his main ride.
All-in-all Jim is doing pretty well. In July we celebrated (?) the three year anniversary of his diagnosis with frontaltemporal dementia and December marks three years since he was diagnosed with ALS. Jim continues to beat the odds thanks to the ongoing prayers and support of family, friends and strangers!
At Jim’s most recent FTD neurologist visit his doctor had to alter the “usual” mental exam Jim is given. It seems Jim has taken that form of the test so many times he has started to memorize the answers. (That was something I learned – with dementia memorization is possible while an Alzheimer’s patient never learns the responses.) Therefore, from now on his doctor will be using different forms of the exam to prevent this. His next follow-up with both neurologists is in January and I will keep everyone posted on his blog. (shaggymetz.blogspot.com)
In August, Jim received a lift recliner thanks to the coordination efforts made by the ALS Association. It has really helped with his mobility around the house. The only bad thing about it is trying to convince the kids that it is not an amusement park ride!
In September Team Shaggy walked in the ALSA’s Walk to Defeat ALS. Once again we were excited to help out with raising funds and awareness for local ALS patients.
The girls are growing fast. Mikayla made her first communion in May. She is now in the third grade and is active in Science Club, Walking Club and Girl Scouts. She says Walking Club relaxes her every day before school and she loves the social time Girl Scouts gives her. Her favorite subjects are still History and Science. She also enjoyed playing softball this summer.
Ruthie “graduated” preschool and started full-day Kindergarten this year! She is making lots of friends in class and in Walking Club. Her favorite subject is “everything” and she often comes home and “teaches” us, the dogs and her dolls what she learned that day. She also played t-ball this year.
Big sister has taken Ruthie under her wing and prides herself in showing Ruthie the ins and outs of the elementary school. Ruthie also joined Girl Scouts this year – cookie sales are right around the corner so don’t be afraid to contact us! (Hint, hint, hint.)
As for me, I accomplished passing my OB/GYN certification and my earned my vascular technology credentials this year which makes me RDMS (registered diagnostic medical sonographer) and a RVT (registered vascular technician.) I also completed my fifth year as a weekender at Hillcrest Hospital. I fill my weeks caring for my family and work what is considered full-time on the weekends from seven pm to seven-thirty am. I can hardly believe it has been almost ten years since I have changed careers! Sometimes it seems like yesterday and other times it seems like decades ago!
On a side note, keeping up with the trend (and dodging political phone calls) has led us to ditch our land line. Therefore, our home phone number is no longer in service. You can reach us at the phone numbers below, by email or on Facebook.
As always, we thank you for your continued support and prayers and hope you know each of you are in our thoughts and prayers. May the New Year bring you health and happiness. God Bless.
Love Always,
Shelley
(Jim and the Kids too!)
shelleynshaggy@yahoo.com
Thursday, November 29, 2012
Thursday, August 9, 2012
ALS Clinic & FTD appointment
Today was probably the strangest ALS Clinic we have ever had.
First, got a call yesterday that they are looking for a new occupational therapist - so no OT today. The good part of that is they scheduled us to come in an hour later since we had the FTD neurologist appointment added on at the end of the day. Even with stopping to get gas and Subway for later we were over 30 minutes early. I came armed with the Jim's new state id, insurance and medicare cards and Cleveland Clinic's co-pay policy printed out (an argument I seem to get into every time since once the customer service rep sees "employee insurance" they demand co-pay even though medicare covers it). So of course they did not ask for any of it or give me a problem with the copay.
Jim was weighed in - and good news is he put on about 5-6 pounds! (Don't I wish gaining weight was good news) - so of course I got grilled why he gained weight by the new nutritionist we have never seen before.
They were unable to do pulmonary function tests because the nurse had accidentally threw away a non-disposable part of the machine yesterday. So no news there.
We had a fill-in physical therapist (who we have seen once before) though our usual PT was unofficially there (he had taken a vacation day.) She didn't do any strength or flexibility measurements but said he looked good.
We saw the ALS neurologist, though not the main one. She increased Jim's Zanaflex (anti-spasm med) to see if we can decrease some of the rigidness in his body, especially arms. She ordered some routine blood work. Overall she said he looked good too.
We did not see the speech pathologist either.
We settled in for a 2 1/2 hour wait for the FTD appointment - but luckily were taken early. We found that the original neurologist's physician assistant (the dr who originally diagnosed Jim with ALS & FTD) is now the FTD neuro's assistant which is good.
The FTD neuro said Jim seemed good. He scored about the same on his MME (mini mental exam). Dr. Appleby had printed an alternate copy of the test because he thought Jim was memorizing some of the questions. The dr added another DNA test (3rd total) we did not get the results of the last one - simply because I haven't taken Jim to have it done. I am working on "gathering" the year's blood work together so Jim can just be stuck once for all these tests. If there is one thing Jim hates is needles - he gets really anxious. So I am waiting to do the optional tests until we have the orders for the routine ones.
The FTD dr said that all of our "special summer days" (our version of a spread out vacation) is really good for Jim and keeping his mood up. That is half the battle. So far we have done many days in the pool, Cedar Point, 2 Indians games, a drive-in movie, Jim's family reunion and tonight the Cleveland Brown's family fun night.
Two more weeks until school starts - Summer has been too short!
First, got a call yesterday that they are looking for a new occupational therapist - so no OT today. The good part of that is they scheduled us to come in an hour later since we had the FTD neurologist appointment added on at the end of the day. Even with stopping to get gas and Subway for later we were over 30 minutes early. I came armed with the Jim's new state id, insurance and medicare cards and Cleveland Clinic's co-pay policy printed out (an argument I seem to get into every time since once the customer service rep sees "employee insurance" they demand co-pay even though medicare covers it). So of course they did not ask for any of it or give me a problem with the copay.
Jim was weighed in - and good news is he put on about 5-6 pounds! (Don't I wish gaining weight was good news) - so of course I got grilled why he gained weight by the new nutritionist we have never seen before.
They were unable to do pulmonary function tests because the nurse had accidentally threw away a non-disposable part of the machine yesterday. So no news there.
We had a fill-in physical therapist (who we have seen once before) though our usual PT was unofficially there (he had taken a vacation day.) She didn't do any strength or flexibility measurements but said he looked good.
We saw the ALS neurologist, though not the main one. She increased Jim's Zanaflex (anti-spasm med) to see if we can decrease some of the rigidness in his body, especially arms. She ordered some routine blood work. Overall she said he looked good too.
We did not see the speech pathologist either.
We settled in for a 2 1/2 hour wait for the FTD appointment - but luckily were taken early. We found that the original neurologist's physician assistant (the dr who originally diagnosed Jim with ALS & FTD) is now the FTD neuro's assistant which is good.
The FTD neuro said Jim seemed good. He scored about the same on his MME (mini mental exam). Dr. Appleby had printed an alternate copy of the test because he thought Jim was memorizing some of the questions. The dr added another DNA test (3rd total) we did not get the results of the last one - simply because I haven't taken Jim to have it done. I am working on "gathering" the year's blood work together so Jim can just be stuck once for all these tests. If there is one thing Jim hates is needles - he gets really anxious. So I am waiting to do the optional tests until we have the orders for the routine ones.
The FTD dr said that all of our "special summer days" (our version of a spread out vacation) is really good for Jim and keeping his mood up. That is half the battle. So far we have done many days in the pool, Cedar Point, 2 Indians games, a drive-in movie, Jim's family reunion and tonight the Cleveland Brown's family fun night.
Two more weeks until school starts - Summer has been too short!
Friday, May 4, 2012
It was a good day...
Today was a marathon appointment at the Cleveland Clinic. Jim had appointments with the ALS neurologist office, the FTD neurologist, pulmonary testing and a pulmonologist appointment. All were good news. Despite some recent issues - Jim is doing really well. He has some increased weakness on the right side. However, his weight is stable and his breathing actually improved by a few points.
The best part of all - Jim had a DNA test for a gene known to cause FTD/parkinsonism a few months ago - it came back negative! Such a relief - with this gene there is was a 100% chance the girls would eventually develop FTD.
Jim will now go for one more DNA test - this tests for the 2nd known gene to cause FTD. So hopefully this too will be negative. We will not get the results of the 2nd test for 3 more months.
All in all Jim is doing good. The last few weeks he has been feeling great - many times better then me. He was having a hard time in March and April - problems with standing and getting up from a seated position. I was really worried how these appointments would turn out. There still are times he has to use the table to pull himself up - but overall he is doing good.
Thank you for your continued prayers!
The best part of all - Jim had a DNA test for a gene known to cause FTD/parkinsonism a few months ago - it came back negative! Such a relief - with this gene there is was a 100% chance the girls would eventually develop FTD.
Jim will now go for one more DNA test - this tests for the 2nd known gene to cause FTD. So hopefully this too will be negative. We will not get the results of the 2nd test for 3 more months.
All in all Jim is doing good. The last few weeks he has been feeling great - many times better then me. He was having a hard time in March and April - problems with standing and getting up from a seated position. I was really worried how these appointments would turn out. There still are times he has to use the table to pull himself up - but overall he is doing good.
Thank you for your continued prayers!
Friday, February 3, 2012
New "ologist"
Like I have said many times - Jim collects "ologists" like people collect stamps. Today we met a new one - his new FTD neurologist, Dr. Appleby. Dr. Appleby is new to Cleveland Clinic via John Hopkins. He specializes in young onset dementia.
There was nothing wrong with our old FTD neurologist - in fact we really liked him. Problem was he was a Univeristy Hospital doctor and my Cleveland Clinic insurance did not like that he played for the other team!! However, I take great comfort that our "team" now all works for the same hospital AND that Dr. Appleby and Dr. Lerner (UH doc) are actually having dinner together tonight! I also found out that Dr. Appleby lives right around the corner from us - here in Brunswick. Now I will be on the look out for him around town.
Not much to report on the visit. More of an intial assessment since we are starting new with him. Suprise, suprise, he addeded another pill (increased dosage on 1 current medication.) Actually it is only 1/2 a pill. The other option was to add 2 pills/day. So I think that brings Jim up to 180 pills/week (not counting pain and as needed anxiety medications.)
Dr. Appleby also ordered another blood test. This one looks for the most common gene to cause FTD. It is attached to a gene that also causes Parkinson's - which Jim has a lot of Parkinson's-like symptoms - so it is possible that it will come back positive. PLEASE pray it does not. IF it does that means there is a 50% chance that the girls have the FTD gene. Though I would love to find a cause, treatment and cure for FTD and ALS - I do not want this to be the way. I only pray that if this is positive and knowing Jim is a carrier will add to any research and discovery of a cure. There HAS to be at least treatment if not a cure by the time our kids get to middle age. Basically, if you are a carrier you WILL get FTD.
There is going to be a wait for the results. So far all genetic testing has been negative - but the previous tests were for ALS genes and only 5% of familial ALS has a known gene link.
So on that positive note I am going to sign off for now. Take Care.
PS - My dad is having open heart surgery this coming Thursday (February 9). He will have double bypass, a valve replacement and a valve repair. So if you could throw in an extra prayer or two it would be appreciated.
There was nothing wrong with our old FTD neurologist - in fact we really liked him. Problem was he was a Univeristy Hospital doctor and my Cleveland Clinic insurance did not like that he played for the other team!! However, I take great comfort that our "team" now all works for the same hospital AND that Dr. Appleby and Dr. Lerner (UH doc) are actually having dinner together tonight! I also found out that Dr. Appleby lives right around the corner from us - here in Brunswick. Now I will be on the look out for him around town.
Not much to report on the visit. More of an intial assessment since we are starting new with him. Suprise, suprise, he addeded another pill (increased dosage on 1 current medication.) Actually it is only 1/2 a pill. The other option was to add 2 pills/day. So I think that brings Jim up to 180 pills/week (not counting pain and as needed anxiety medications.)
Dr. Appleby also ordered another blood test. This one looks for the most common gene to cause FTD. It is attached to a gene that also causes Parkinson's - which Jim has a lot of Parkinson's-like symptoms - so it is possible that it will come back positive. PLEASE pray it does not. IF it does that means there is a 50% chance that the girls have the FTD gene. Though I would love to find a cause, treatment and cure for FTD and ALS - I do not want this to be the way. I only pray that if this is positive and knowing Jim is a carrier will add to any research and discovery of a cure. There HAS to be at least treatment if not a cure by the time our kids get to middle age. Basically, if you are a carrier you WILL get FTD.
There is going to be a wait for the results. So far all genetic testing has been negative - but the previous tests were for ALS genes and only 5% of familial ALS has a known gene link.
So on that positive note I am going to sign off for now. Take Care.
PS - My dad is having open heart surgery this coming Thursday (February 9). He will have double bypass, a valve replacement and a valve repair. So if you could throw in an extra prayer or two it would be appreciated.
Wednesday, January 25, 2012
6 Month Check Up - ALS Clinic
Today was Jim's 6 month ALS visit. It was a good / not-so-good day.
Good news - Breathing and weight were stable.
Bad news - he has lost A LOT of strength in his arms and some in his right leg.
They recommended a voice projector device so he can be heard better - however he has already said he knows he won't use one. I don't see it happening either - I just see an overpriced karaoke unit for the kids.
There was also talk of adding a Parkinson’s medication to his list. However I decided (and redecided after talking to Aunt Mary) that if we do add it we will wait until later - the medication would help to relieve some of his stiffness etc. but I'm not crazy about the side effects. It can make your mind more fuzzy and lower your blood pressure causing dizziness. These are 2 symptoms Jim has naturally and I think adding to them is not enough of a tradeoff. As I talk to Jim I seem more bothered then he does about the stiffness.
We also talked about his getting a Baclofen pump. This too would treat the stiffness by delivering on of his anti-spasmatic medications through an implanted pump into his system. Again after discussing it with Aunt Mary, the neurologist and the physical therapist we may cross this bridge later but not now. As I said the stiffness seems to bother us instead of him and the initial procedure calls for a test dose administered by lumbar puncture. For those of you who don't remember - Jim had a horrible anxiety/panic attack the last time he had a LP. Then there is surgery involved to implant the pump. I think the pump is definitely something we will have to reconsider, but right now he is in the gray area where he needs it. We will revisit the option down the road.
As of right now - we are both exhausted - 7 hours at the Cleveland Clinic will do that too you. Jim's next appointment is next Friday with the new neurologist Dr. Appleby. Updates then.
Thank you for taking the time to care & read this!
Good news - Breathing and weight were stable.
Bad news - he has lost A LOT of strength in his arms and some in his right leg.
They recommended a voice projector device so he can be heard better - however he has already said he knows he won't use one. I don't see it happening either - I just see an overpriced karaoke unit for the kids.
There was also talk of adding a Parkinson’s medication to his list. However I decided (and redecided after talking to Aunt Mary) that if we do add it we will wait until later - the medication would help to relieve some of his stiffness etc. but I'm not crazy about the side effects. It can make your mind more fuzzy and lower your blood pressure causing dizziness. These are 2 symptoms Jim has naturally and I think adding to them is not enough of a tradeoff. As I talk to Jim I seem more bothered then he does about the stiffness.
We also talked about his getting a Baclofen pump. This too would treat the stiffness by delivering on of his anti-spasmatic medications through an implanted pump into his system. Again after discussing it with Aunt Mary, the neurologist and the physical therapist we may cross this bridge later but not now. As I said the stiffness seems to bother us instead of him and the initial procedure calls for a test dose administered by lumbar puncture. For those of you who don't remember - Jim had a horrible anxiety/panic attack the last time he had a LP. Then there is surgery involved to implant the pump. I think the pump is definitely something we will have to reconsider, but right now he is in the gray area where he needs it. We will revisit the option down the road.
As of right now - we are both exhausted - 7 hours at the Cleveland Clinic will do that too you. Jim's next appointment is next Friday with the new neurologist Dr. Appleby. Updates then.
Thank you for taking the time to care & read this!
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