Not sure what to expect

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Not sure what to expect

Postby robertvalerie » Wed Sep 09, 2009 10:29 am

I was diagnosed with PSP in May or June of this year (2009), but I haven't been told as to what to expect. Are there different stages, and what defines a stage.
I will be going for my MRI this week so maybe my neurologist is waiting for those results befor he talks to me.
I hope you have a good day
robertvalerie
 
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Postby Robin » Wed Sep 09, 2009 2:30 pm

If possible, I suggest you have some one attend the doctor's appt with you to ask questions and take notes. Agree in advance with them what questions you want to ask the MD.

The best info on expectations is the "Clinical outcomes" article. I've posted extensive excerpts here. You can do a search of past posts.

Before that research, the best we had were some Litvan articles. Here's a link to a good chart frrom one:
http://www.pspinformation.com/disease/p ... toms.shtml

You can do a search here of other Litvan articles on PSP.

CurePSP publishes a "Guide for PSP and CBD." That's worth checking out.

Not everyone likes the "stages" document written by a group of caregivers ages ago, but here it is:
http://www.pspinformation.com/disease/psp/stages.shtml
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Postby robertvalerie » Wed Sep 09, 2009 2:38 pm

thank you Robin
I hope you have a good day
robertvalerie
 
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Postby eplowman » Wed Sep 09, 2009 7:54 pm

Robert,

Welcome to the forum. I regret the reason you are here, but I'm glad you found us. We want to encourage you and help you in any way we can.

You asked about stages of PSP, and what you might expect in the days and years ahead.

Probably no two people with PSP are exactly alike when it comes to the timing, extent, and progression of symptoms. There are no official "stages" of PSP as such. A couple of women several years ago attempted to catalog a list of symptoms and at what approximate point in the progress of the disease they occurred. They then assigned the symptoms to one of four stages. However, because patients and the progress of symptoms differ, a number of patients who had symptoms categorized as, say, Stage 3 saw them occur in the equivalent of Stage 1 or Stage 2. And so on. So, such a formula of stages is of little use in knowing what to expect next. I personally prefer to use a formula of Early, Middle, and Advanced stages of PSP, based primarily on the extent and severity of symptoms.

When our neurologist diagnosed my late wife in 1999, he sat us down, and summarized succinctly what PSP was, and what we could expect. We didn't sleep very well that first night. But we slowly came to grips with the new realities. The only noticeable symptom my wife had at the time was an occasional unexplained fall. Rose was still driving (though she soon had to give up the car keys as vision and balance problems increased). We began preparing while we still could -- getting our affairs in order, including updating our advanced medical directives (and specifying brain donation for research), traveling to visit relatives and friends, preparing to sell our home and move to single-level wheelchair accessible housing. We went on dates and outings. We were in our senior adult Sunday school class and church services almost every Sunday. We were buoyed by our family members, and especially by our religious faith. I believe we managed to squeeze in a lot of joy and living to counterbalance the sadness those first five years following diagnosis. The next four years, with the advent of the wheelchair, were more challenging, but we still enjoyed trips to the mall, trips to family reunions two states away, outings to watch the grandchildren compete in soccer and football games, dates (with a caregiver as chaperone :) ),and much more. Our love for each other deepened during these years.

Please tell us a little more about yourself. If you are married, please ask your spouse to join the forum. There is a wealth of information here about PSP and about caregiving. And we have many wonderful folks who can answer questions and offer good advice, based on their own experience. And some of them are great at listening and cyber-hugging when that is needed.

How long ago did the first symptoms occur that eventually led you to the neurologist who diagnosed PSP? What were the symptoms -- unexplained falls? Vision problems? What?

We have several other PSP patients here who are forum members. Perhaps one of them can stop in and greet you, either writing personally or with the assistance of a family member.

Let us know what more you learn from the doctor, and if you have other questions.

All the best,

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby robertvalerie » Thu Sep 10, 2009 11:47 am

Thank you Ed for your reply,

I started to have shakes in my right hand and arm about 15 years ago.
The family Dr. put it off as a beneign tremor.
In the late 90's I went to a nuerologist who repeated the Dr.s diagnosis.
At that time I had an MRI that showed some mid brain adnormalities but I was told it was the on set of age, hmm, just late 40's and getting old!
In 2006 I was referred to another neurologist, he couldn't put a name to symptoms, so had another MRI and was told there was some change but not to worry.

Started to develop headache that wouldn't go away in late 2007 early 2008.
Started to walk aliitle strange about that time.
Of course in early 2008 I fell a couple of times and the headaches were still there. The comments from my wife to stop staring at her at the kitchen table were starting to bother me.
Mid 2008 was a turning point for me, I was overworked at the office and under a lot of stress, I took an absence from work, and was told by my Dr. that I was suffering from depression. Now the medications started and by spring of this year, I had been on 3 different anti-depressants, sleeping pills etc. Needles to say, nothing is working, my wife who is a nurse, is now getting ticked at our family Dr. In March I was referred to neurologist from 2006, who now says I show signs of parkisonisms and refers me to a Dr. at the motion disorder clinic here in Winnipeg. Dr. does full gambit of diagnosis and says, Well Mr and Mrs Merritt, it would appear that Bob has PSP, here are a couple of websites to visit that can explain things in more detail.
At this point the anti-depressant meds are gradually halted and I am given an increase in Sinimet as the earlier neurologist had prescribed.

I have not returned to work, balance is weaker, more strain in eyes, nauseated, get up and go has got up and gone.

I am married with 3 kids, 2 of which are still at home.
I know my wife is supportive, but I don't think she has anybody to talk to about this.
The only time my wife knows I am having a hard time is when I start to cry.
My not working now has put a real strain into our life.:)

Bob
I hope you have a good day
robertvalerie
 
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Postby eplowman » Fri Sep 11, 2009 7:52 am

Bob,

Thank you for taking time to share with us some of the details of your situation. I'm sorry you are having to go through all of this.

You and I have conversed via email.

Meanwhile, perhaps others here will have a word of encouragement and possibly advice for you.

Keep us posted on what you learn from the doctors.

I hope your wife will join us in the forum. She will find a wealth of information here (especially in the General Discussion area) and, perhaps most important, a community of support.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby Robin » Fri Sep 11, 2009 12:24 pm

Bob,

I'm sorry to learn of these sad details. You and your wife both need to find more support than each other.

The headache and nausea are somewhat odd symptoms. Do you have any orthostatic hypotension -- dizziness upon standing? Those with low BP or OH often have headaches caused by the BP.

Glad to hear you are getting your meds sorted out.

Robin
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Postby eplowman » Fri Sep 11, 2009 4:41 pm

Also, Bob, did the doctor explain exactly what kind of change(s) to the "mid-brain" the MRI scans revealed?

The only apparent diagnostic value of an MRI scan in the case of PSP is if the brain shows shrinkage, that would be consistent with what usually happens in PSP. However, some shrinkage may be part of the aging process. So, MRIs are not a conclusive method for diagnosing PSP.

In our email exchange, because of the oddities in your case, I had suggested that if you hadn't been tested for antibodies for Lyme Disease, that you should discuss with your doctor the merits of having such a test. The reason is that untreated Lyme in time can result in antibodies producing symptoms that mimic PSP. You said you would be meeting with the neurologist in November and would ask him then. I'm not sure I would wait that long myself. You may want to confer with your general practice doctor sooner than that to see if he can refer you to an infectious diseases specialist. It may take two or three weeks to get the results of the tests. The sooner you can find whether Lyme may be involved, the better. If the tests are negative, it will be good for the doctors to have that exclusion on the record. If positive, specialists may want to begin treatment with antibiotics immediately; in some cases, this can halt the deterioration and progress of symptoms, and even bring improvement. =Some= cases, not all, sad to say. Whatever the results, you and the doctors at least will know something that you don't presently know.

Update note: In light of what Robin says below, it seems a direct connection with a specialist would be the preferred approach.

Meanwhile, we're going to hang in there with you and Valerie, and offer whatever personal encouragement and support that we can.

Do you have other adult family members in the area?

ed p.
Last edited by eplowman on Sat Sep 12, 2009 12:44 am, edited 1 time in total.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby Robin » Fri Sep 11, 2009 5:55 pm

Re: Lyme
Most local support group members here report that they have to find specialists from the outset because their neurologists don't put weight into the Lyme testing.
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Postby robertvalerie » Sat Sep 12, 2009 12:10 am

thanks Ed and Robin, I will get in touch with my family Dr. for lyme testing

Bob
I hope you have a good day
robertvalerie
 
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Postby eplowman » Sat Sep 12, 2009 1:30 am

Robin,

Good point.

Also, it is well to note that a lot of controversy surrounds Lyme Disease. There are a number of quacks and crazies and "alternative medicine" advocates out there promoting various theories and treatments, and fighting the Infectious Diseases Society of America (IDSA), the medical society to which many infectious diseases specialists belong. They especially oppose not only the IDSA's 2006 guidelines for the treatment of Lyme but also related government regulation.

The IDSA in July held a well-publicized public hearing, webcast on the Internet, with testimonies and transcripts available on the IDSA website. A panel of experts will now decide whether the guidelines should be updated or revised based on review of scientific evidence. Their report is due by the end of the year.

Also note that most of the controversy is about diagnosis and treatment of the disease and the qualifications of those who do the treating -- NOT about testing for the presence of antibodies (though many of the IDSA opponents deride the standard blood tests as unreliable; negative test results can impact their income).

Here's the IDSA website:

http://www.idsociety.org/lymedisease.htm

The clinical practice guidelines and the FAQ sheets have links there.

ed p.

p.s. Let's continue any further discussion of Lyme in the General Discussion section of the forum, and reserve this topic for considering Bob's situation. I apologize to Bob and all for making public mention of Lyme testing.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
eplowman
 
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Joined: Tue May 10, 2005 10:22 pm
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