24/7 Caregiver for my 75 year old wife with PSP


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24/7 Caregiver for my 75 year old wife with PSP

Postby Fred Shirley » Sun Nov 08, 2009 12:08 pm

I'm not sure why I'm writing this except I think it's a story that I need to tell. We live in a 55+ community in Sebring, FL, a small town about 80 miles south of Orlando. This first started in October 2006 when we were in New York for my school homecoming. First my wife fell entering the shower at our motel. No injury except to the shower curtain. The next night we were at a dinner and she fell again when she went to sit down except there was no chair there. Again no injury but we knew that something was wrong. When we returned a few days later we obtained an appointment with a local neurologist. After numerous tests including two MRI's and a PET scan of her brain the doctor diagnosed her with Spino Cerebellar Ataxia, a degeneration of the cerebellum which controls speech and movement. These tests were all normal and when questioned about this the doctor merely said that it didn't matter. In the meantime her condition was worsening both physically and mentally and her abilities to perform normal household chores were becoming more difficult for her. We decided to seek additional advice and went to another local neurologist. This one ordered a spinal tap which also came out normal. This doctor gave us the impression that he neither knew nor cared anything about SCA and it was again time to move on.
The Cleveland Clinic has a large facility in Weston, FL, about 145 miles south of us. After several trips and more tests including a genetic test, which also came back normal, the neurologist there still insisted that she had SCA despite the fact that not one of the tests which she underwent over the previous 2 1/2 years supported this diagnosis. There is nor cure or treatment for SCA.
Finally, I decide to go to Mayo Clinic and found that they had a very large operation near Jacksonville, 220 miles north of us. Our first trip there was last May of this year. She was assigned to one of the 46 neurologists on Mayo's staff. The appointment was scheduled for one hour, however, after watching her walk, talk and drawn some pictures the doctor flatly stated “She does not have SCA." After two more trips for additional tests, on August 14 we went back to the original doctor who stated, "I am 95% sure she has Progressive Supranuclear Palsy." By this time my wife was almost totally physically impaired and her cognition was also severely impaired. It was almost like living alone as far as any communication between us was concerned.
However, she is on Carbodopa-Levidopa and now up to 2 1/2 tablets three times a day and as a result her cognitive abilities have returned. We now talk; her memory is excellent, much better than mine. Her physical condition has not improved and she needs help with almost all movements.
We will be returning to Mayo in February and have been told that there may be some new medication available for testing.
Our life is not as either of us anticipated for our retirement years and considering that I am a ten year lung cancer survivor, a five year prostate cancer survivor, have COPD and haven't done any cooking since I passed my cooking merit badge as a Boy Scout and that I will be 80 next month, we are doing quite well. We live in an excellent community and our neighbors are great.
Fred Shirley
 
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Postby Beth » Sun Nov 08, 2009 12:55 pm

Dear Fred,

I don't come here as often as I used to, but was compelled to come today, the 5th anniversary of my Mother's death from PSP. As I was reading your story, I relived ours, however we were close to several major teaching hospitals and so we didn't have to go as far for help. Also, PSP was her only diagnosis. I wish you weren't going through this, but since you are, my humble suggestion: If your wife does have PSP, it or a complication of it will take her life. Don't let it take yours as well. I'm afraid that the stress of my mother's condition caused my father to suffer a fatal stroke. The stresses are there, but find a way to get help dealing with them so that you can be with her in her greatest hour of need. Others, especially Ed, was able to do this and he would be a great resource.

A high school friend who is a social worker had a mother who suffered from Parkinson's Disease. All of her siblings wrote their father saying that they knew the disease would take their mother's life, but urged him to get help so they wouldn't have PD take his life as well. She shared with me, after learning of Dad & Mom's deaths, the correspondence she had with her father. I don't have many regrets, for I took over Mom's care for years after Dad died, but my one regret was that I didn't write a similar letter to my father, or talk to him. I don't know if he would have listened, but at least I would have tried.

My best to you both as you battle the beast PSP. I'm a little teary eyed today, remembering all the many gifts my parents gave me, none of which can be held in my hand. I wish for you and your wife many days of the same gift giving ahead.

Beth
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Postby Robin » Sun Nov 08, 2009 1:57 pm

Fred,

Welcome to this group, though sorry you have need to be here. I've never heard of someone with a PSP diagnosis previously been diagnosed with SCA. I do hear this rather frequently in the MSA community since SCA is very similar to MSA of the cerebellar type (MSA-C). What a long, winding road you've been on.

Who is the Mayo Jax MD providing the diagnosis? If you are willing to do, who is the very first neurologist who kept sticking to the SCA diagnosis?

Interesting that the Sinemet improved your wife's cognition and speech. That's great. Many with PSP see no benefit from Sinemet.

Can you find out what the "new medication available for testing" at Mayo Jax is? Is this NAP (AL-108)? Mayo Rochester was to be one of the participating sites for this. (I assume all the Mayo Clinics can participate.)

Did you see a neurologist at the Cleveland Clinic outpost in FL, or were you just there for testing?

I helped someone in the Lewy Body Dementia community last year with brain donation. She also lives in Sebring. If dementia becomes more of an issue for your wife, you might join the local dementia support group. (The wife of the brain donor is now the group leader.)

Have you signed your wife up for brain donation? Wonderfully, in many cases in FL it is free. The brain is analyzed by the neuropathologist at Mayo Jax.

There is also someone else here dealing with PSP who lives in Sebring or near Sebring. Her name is June. I'm sorry but I can't remember her user name here. Perhaps you could do a search of posts containing the words "June" and "Florida."

Robin
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Postby Fred Shirley » Mon Nov 09, 2009 11:46 am

Robin,
Thank you for your thoughtful response. Some where I had heard about the possibility of MSA. "Multiple Systems Atrophy" This sounds like medical terminology for "We haven't the faintest idea what's wrong."

Anyway, our doctor at Mayo Clinic Jacksonvile is Jay A, Van Gerpen, MD. Nice guy. Regarding a new medication, the doctors report of August 11 says: "I also discussed with the patient and her family that there has been some optimism about the possibility of lithium being neuroprotective. However, another compound, which is also a GSK3 inhibitor (this is the aspect of lithium that is thought to be neuroprotective) is currently about to be investigated at multiple, academic medical centers, including Mayo Clinic Florida. Thus the patient may be a candidate for this study."

We are hoping, when we return in February, that she may be a candidate for this. Incidentally, we are highly impressed with Mayo. We have been treated like adults and the staff seems to go out of their way to make you comfortable.

Our neurologist here in Sebring was Bridglal Ramkissoon, MD and we were assigned to Taranum Khan, MD at Cleveland Clinic, also a neurologist.. The second neurologist we saw in Sebring was a mistake. He advertises in the yellow pages as specializing in Carpal Tunnel Syndrome and Headaches.

I have read about the need for brain donations. Honestly, I have not discussed this with my wife. I don't think she is able to acknowledge the probable finality of her condition and I certainly don't feel it is appropriate to do so at this time.

Fred
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Postby Robin » Mon Nov 09, 2009 12:58 pm

Hi Fred,

I have great respect for Van Gerpen. He's a good addition to Mayo Jax. (When my dad was seen at Mayo, there was no one competent there in neurology, and he was diagnosed as having rheumatoid arthritis. They missed the PSP completely.)

I encourage you to have the discussion about brain donation and end-of-life treatment now, and make this a conversation about BOTH of your wishes. This takes the sting out of the situation. And, since your wife is no where near dying, you can justifiably say that you want to fill these papers out while you are both cool-headed and there's no crisis. Waiting until "the end" to have this discussion is not a good idea. That being said, you never even have to discuss brain donation with your wife. The healthcare POA's decision is the only one that counts, and the donor's consent is not required.

I had a good laugh at your understanding of Multiple System Atrophy! I will be sure to pass this along to the MSAers in our local support group!

Probably what the August letter is referring to is Nypta. (I posted about this over the weekend.) I'm frustrated that we are just hearing about this now when obviously it's been in the works for several months.

Robin
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Postby Fred Shirley » Mon Nov 09, 2009 4:11 pm

Robin,
I just received a letter today from Dr. Van Gerpen. He wants to see my wife in about three months (we already have an appointment for February 1) to see if she might be eligible to take part in a study to be initiated in the near future of a metabolite of lithiumto be used as a neuroprotective agent. We are delighted.
Fred
Fred Shirley
 
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Postby Robin » Mon Nov 09, 2009 5:05 pm

Hi Fred,
Thanks for today's update and that's great news! I learned last week that the study for Nypta is going ahead like gangbusters. Was Nypta, a medication made in Spain, mentioned in the letter?
Robin
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Postby PSPCare Giver » Wed Dec 02, 2009 11:31 pm

[NOTE: Messages deleted by Moderator]


[Warning to PSPCare Giver: we do not permit personal attacks against members. If they continue, you will be expelled from the forum. There was NO negative evaluation made of the doctor you named and with whom you appear to have a personal connection. But, for future reference: in the interest of fairness and liability considerations, we would ask members who may be inclined to make a negative evaluation of any doctor to refrain from identifying him/her by name in forum messages. ---Moderator]


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Postby eplowman » Thu Dec 03, 2009 12:35 am

Fred,

May I suggest that you take steps to get third-party assistance for your wife. You cannot care for her 24/7 without risking your own health and mobility. Caregiving is stressful, and will be increasingly so as the disease progresses.

A stroke ended my five-year role as sole caregiver for my late wife. I am known as an easy-going, laid-back individual calm under pressure. But one particularly stressful morning sent my blood pressure soaring, which triggered a bout of atrial fibrillation, which caused blood to pool at the top of the heart, which caused a blood clot to form, resulting in a piece breaking off and being pumped up through a carotid and into my cerebellum. The doctors announced the end of my career as a hands-on caregiver, and we had to hire 24/7 caregivers (who were wonderful). Fortunately, I wasn't left a hopeless cripple myself. Having caregivers do the day-to-day "heavy lifting" and details of care allowed me to concentrate on providing relaxed =loving support= for my wife. TLC can be your greatest contribution to her in these difficult days for her.

So, my friend, take care of YOURSELF so that you can stay around for your sweetheart's sake. Get some help. As much of it as you can.

p.s. Do a Search and look at some of the recent posts that mention lithium. The side effects were so intolerable that virtually none of the patients were able to stay in the trials for PSP patients. If your wife undergoes testing with any form of lithium, be sure to monitor her closely for bad side effects.

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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caregiver

Postby ruthkri » Thu Dec 10, 2009 6:03 pm

Dear Fred, Your post was very interesting. I am so sorry you have gone through so much trauma . PSP is a hard and difficult diagnosis to .
accepr Don't look for answers and don't try to find too much information on the internet. You seem to have faith in the doctor you are seeing. Get your primary information from him. You are under enough stress getting used to be a caregiver and you will drive yourself nuts trying to absorb everything you are reading or hearing about. Unfortunately you will find out that this disease is not well known by some doctors since the knowledge about it has only been in the past 20-30 years. I was most fortunate to have a doctor son who had treated a recent patient diagnosed with Parkinson's for eight years when he took over recognizing PSP and confirming it with a neurologist he was associared with. Therefore we were "Lucky" if you can call it luck. My son recognized one of the symptoms of PSP in his Dad's eyes ( not being able to move them up or down but rather moving his head) and called for immediate consultation. An MRI showed deterioration of the brain stem and the diagnosis was made before any of the really bad falls and impairments started. Since then 2002 I have learned about PSP by being a member of this forum. It is a wonderful place for you to become informed and also to vent your
frustration for we have all been there. We kept my husband at home where he left us in March 2007. You will need full time help and will learn
what is available and I might suggest you join a support group. You will also learn very quickly that no two PSP patients are the same in any reaction. Medications that work for one or symptoms are often different. Also sinemet which is a Parkison's medication is for problems not associated with the cognitive or memory issues. My dear friend there is so much for you to experience in this journey please do take care of yourself and do not try to second guess the doctor with whom you now have faith. Hang in there and take it as it comes and learn as you go not as you anticipate what is coming other than what is recommended by professionals sincerely RuthKri
wife of Bud who received his golden wings March 4, 2007
And now abideth Faith, Hope and Love and the greatest
of these is Love
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