Questions on PSP symptoms and medication


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Questions on PSP symptoms and medication

Postby Mim » Tue Jun 26, 2012 8:30 pm

Hello.

I a new to this forum. My mother has PSP: symptoms since 2008, diagnosed with Parkinson in autumn 2009, diagnosed with PSP in March 2012. I think she's at stage 3 (score between 40 and 50 on the PSP rating scale). She also has osteoporosis and she fractured a vertebrae in the lower back in June 2011, a year ago. She had surgery and managed to walk again.

I have many unanswered questions on how to best take care of her. I'll stick to the main ones first. As I have read in the forum, my goal is to try to help her as much as I can about things I have some control over. Unfortunately, I often get the impression that doctors won't try as hard: when they know what she has, it feels like they give up on helping her out, or as if they think it's normal she suffers. I can't stop the stiffness, but can't I improve control over the pain, anxiety and insomnia?

She has been in a lot of pain this past year, mainly in the legs, but sometimes in the arms as well. It kept her awake during the night. The neurologist doesn't think it comes from PSP while the orthopedic surgeon doesn't think it comes from the fractured vertebrae and surgery. My mother is lucid but she is very vague describing her symptoms. I don't know what kind of pain it is (not an electrical shock). Morphine pills did not relieve her. Fentanyl patches do better. Now that the pain seems under control, she complains about being extremely uncomfortable at times. She can't seem to be able to stay in any position. Is this familiar to you? Any tip on how to relieve her? She also takes lyrica, I'm not sure if she needs it, it was added when she had her back surgery.

Another issue is anxiety. When she feels very stiff, and she's very uncomfortable, and she can't rest, she gets more and more anxious (which I totally understand). She complains she can't breathe (she really is out of breath) and she gets on the verge of a break down. This is happening more and more often. It is an issue for both of us. I'm the only family member who can take care of her and the only person she trusts, which makes me the best person to calm her down. But I also have a full time job and very young kids, and I can't always rush to her side. And this is making me anxious too... She takes serax (oxazepam) and effexor (anti-depressant). I was told by the pharmacist to try a faster anti-anxiety medication than serax. A doctor prescribed Rivotril (clonazepam), but I am worried about the side effects (unsteadiness and problems with coordination!) I think Ativan is much more common with PSP patients? Regarding the anti-depressant, I think effexor is not the most common one either for PSP patients? Both have been prescribed before the diagnosis.

Also, she often wakes up in the middle of the night. She takes serax (oxazepam) before she goes to bed, and again during the night when she wakes up (sometimes it works, sometimes it doesn't). Anything to help her sleep better?

Something else I would like to know about is exercising. Exercising is not part of my mother's education, which does not help. When she does something one day (exercise, doctor appointment), she usually needs the rest of the day, and often the next day, to rest. And she always complains she's more stiff, more in pain afterwards. Are these complaints common? It makes her believe exercise is bad for her. I think it would help her feel better. She has started falling badly too, and except for balance exercises, I don't know how I could help.

Regarding medication, I'll also mention that she takes Sinemet because it seems to have some effect on her.

I really wish I could make her feel a little better.

Thanks for your help,
Marie.
Mim
 
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Re: Questions on PSP symptoms and medication

Postby eplowman » Tue Jun 26, 2012 11:30 pm

Hello, Marie,

Welcome to the forum.

Can you share a few more tid-bits of info about your mother; it might help us see the bigger picture of what she and you are dealing with,

1. What is your mom's housing situation? Does she live in your home? Do other loved ones also share the home?

2. Who is her primary hands-on caregiver? A family member, hired experienced aide, or ?

3. What is the extent of her symptoms? (a) Does she have swallowing problems (choke on food and liquid)? (b) Does she feed herself, or does a caregiver feed her? (c) Is she mobile? If so, does someone assist her EVERY TIME she is on her feet? Falls are her most serious risk for permanent injury. Does she use a heavy-duty walker, or is she confined to a wheelchair most of the time during transfers? (d) Does she receive assistance every time she is in the bathroom, whether for toilet or bathing purposes? Whe bathes her? (The bathroom is the most dangerous room in the house or apartment for a PSP patient. She MUST have vigilant assistance there at all times. A fractured skull, a broken neck, a broken back, dislocated shoulders with torn tendons -- sadly, these and more have been reported by a loved one/caregiver as having happened in the bathroom to their PSP patient.) (e) Is she incontinent? (f) Does she have problems with vision? her speech? (g) Are there signs of short-term memory problems?

4. Is your mother left ever alone in the house or apartment for more than, say, an hour or two?

5. Was the injury to her spine the result of a fall?

Pain generally is not part of PSP, although it may or may not accompany rigidity of the neck and atrophy of the spine, if and when that phase begins. I would suspect the spinal injury as the cause of most of her pain and discomfort. It is commonly the aftermath of such injuries and surgery. Pain treatment CAN complicate matters for a PSP patient, for certain medicines MAY cause adverse side effects. Don't be too hard on the doctors. PSP as of now is both incurable and untreatable. Many doctors are aware of the possible side effects and complications that treatment of non-PSP-related symptoms can cause. So, they may be hesitant about doing something that may make matters worse for the patient.

Others here may have suggestions about meds.

Blessings to you as you seek to offer comfort and care for your mother.

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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Re: Questions on PSP symptoms and medication

Postby Robin » Wed Jun 27, 2012 1:07 am

Marie,

Do you live in the US or elsewhere?

1. You said/asked: "it feels like they give up on helping her out, or as if they think it's normal she suffers. I can't stop the stiffness, but can't I improve control over the pain, anxiety and insomnia?"

Our doctors never gave up trying to resolve problems. Maybe you should get different doctors? Perhaps it would help if you listed your mother's top 3 issues, and just focused on these at every appointment with the PCP and neurologist. If your mother is vague at describing her symptoms, what is the MD supposed to do?

2. You asked/said: "Now that the pain seems under control, she complains about being extremely uncomfortable at times. She can't seem to be able to stay in any position. Is this familiar to you? Any tip on how to relieve her? She also takes lyrica, I'm not sure if she needs it, it was added when she had her back surgery."

Is she suffering from akithisia? What about taking her to see a pain specialist?

3. You said: "Another issue is anxiety. When she feels very stiff, and she's very uncomfortable, and she can't rest, she gets more and more anxious (which I totally understand). She complains she can't breathe (she really is out of breath) and she gets on the verge of a break down. This is happening more and more often. It is an issue for both of us."

This sounds like a very complex problem. If the neurologist can't help, can he refer to a pain specialist or a psychiatrist?

4. You said/asked: "I was told by the pharmacist to try a faster anti-anxiety medication than serax. A doctor prescribed Rivotril (clonazepam), but I am worried about the side effects (unsteadiness and problems with coordination!) I think Ativan is much more common with PSP patients? Regarding the anti-depressant, I think effexor is not the most common one either for PSP patients? Both have been prescribed before the diagnosis."

No such thing as a "more common" medication with PSP patients. I doubt anyone has studied what a large number of autopsy-confirmed PSP patients are taking outside of levodopa/carbidopa. All meds are hit and miss with everyone. The only way to know is to try.

5. You said/asked: "Also, she often wakes up in the middle of the night. She takes serax (oxazepam) before she goes to bed, and again during the night when she wakes up (sometimes it works, sometimes it doesn't). Anything to help her sleep better?"

Meds for better sleep = melatonin, trazodone, sedating anti-depressant, Klonopin (clonazepam), etc.

Also make sure she's practicing good sleep hygiene.

6. You said/asked: "When she does something one day (exercise, doctor appointment), she usually needs the rest of the day, and often the next day, to rest. And she always complains she's more stiff, more in pain afterwards. Are these complaints common? It makes her believe exercise is bad for her. I think it would help her feel better. She has started falling badly too, and except for balance exercises, I don't know how I could help."

Post-exercise complaints are very individual. It sounds like either your mother is overdoing it with the exercise or she's just not in favor of exercise. Why force her to do something she doesn't want to do?

Robin
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Re: Questions on PSP symptoms and medication

Postby Mim » Wed Jun 27, 2012 8:31 am

Thank you Ed and Robin for your replies and support.

To answer Ed's questions:

1. My mom lives in a residence for the elderly, in the autonomous section (which is most of the residence, but there are a few medical unit and nurses on call 24/7 available to everyone). She lives alone. She has an emergency call button on her wrist (which calls me).

2. I am her primary caregiver (and almost the only one). She can receive some help through the residence services too. For now she does not require much care. I organize all the medical appointments, drive her there, ensures the communication between doctors... I help her with what she can't do (washing dishes, clothes, running errands, etc...), but it's not on a daily basis. There are a few "shops" in the residence as well, so she goes to the hairdresser to get her hair washed for instance.

3. (a) She has swallowing problems. She worked with an orthophonist and she improved, but she still frequently clears her throat and she has to pay attention to what she does when she eats/drinks. She lost weight and she is taking some supplements now. I am monitoring her weight. (b) She feeds herself, the meals are provided by the residence, they're not specifically adapted to her (but there's nothing hard to swallow). (c) She is mobile. She is slow but she has been doing physiotherapy for the past year. If she makes an effort, she can do a lot of movements; but she won't naturally do them other than for a doctor's test for instance. She is not assisted. She uses a heavy-duty walker. (d) She bathes herself when she feels she has enough energy (so, not every day). There are bars to hold on everywhere. (e) She is not incontinent. (She wears a light protection for effort/coughing). (f) She has double vision, prisms, and she still complains her vision is blurred, problems with eye movements (looking up is hard,, especially since she is hunched over by arthrosis), light sensitivity. Her speech is affected along with her swallowing. Her speech is slurred (more or less depending on time of day) and her voice is low. (g) Her thinking is slower but I think that's all. Sometimes she's quite sharp. Sometimes she says the wrong word or name, or I have to repeat things, but not much, so there's no obvious problem to me. She takes her medicine herself (from a pill dispenser).

4. She's alone all the time (at minimum, I do call her several times a day to check on her)... but she is still quite capable, though I would say she is on the verge of requiring assistance for clothing, bathing, and maybe surveillance while eating. Even if I moved her to the medical units of the residence (which I am considering but cannot do without her consent), she would still be alone most of the day.

5. There is no clear cause to the injury (she gradually could not walk anymore and was in a lot of pain, but we cannot pinpoint one event that caused this). It was probably a combination of osteoporosis and repeated falls. Then after re-adaptation and physiotherapy she stopped falling, and now she started again.

I will add that she does not want/like outside help (except from me), and since she has no cognitive problem, I can't go against her will. I do think she could use more help, and it would make her safer, but I have to work to convince her.

To answer Robin's questions:

We live in Canada (in Quebec).

1. We changed doctors when it was really critical, but it's not an easy thing to do. I don't think our current doctors are bad actually, they take their time with us which is a good quality nowadays, but they're not easy to reach outside of our appointments, and I do get the impression they could try a little harder. Or they could explain why they are reluctant to do more. I do know she already takes tons of medicine. I agree that not having a good description of the symptoms doesn't help. I keep asking questions, I printed questionnaires on pain, but it's like no word sounds right to her, and she's loosing interest.

2. I asked several times about pain specialists, but all I was recommended is physiotherapy. I'll try again. Her mother had restless leg syndrome, and I think she has it as well.

3. We have up-coming appointments with her doctors in July, so I certainly want to explain her anxiety to them. She has seen a psychologist in the past, but I don't think it can help her much now (the patient has to want to change). I do make her aware that she is anxious when she is, and she works on calming herself down.

4. I did a search on Rivotril in the forum, and only got a couple of posts, whereas Ativan will bring hundreds, hence my impression that it was not the most common. For the anti-depressant, I read something in the forum about the tricyclic anti-depressant helping with PSP symptoms? but that was an older post. Effexor is not tricylcic.

5. I will discuss meds for sleeping with her doctors. What do you mean by good sleep hygiene? Same as for my kids: no light in the room, regular hours, no excitement before bed time?

6. I do think the exercises were too much, so we slowed down. But I'm afraid if she stops altogether, she's going to loose quickly whatever autonomy she has left. The specialist in movement disorders who made the PSP diagnosis recommended exercise (note: he is not following her, it was a one-time appointment). Also, I have to clarify that by "exercise", I don't necessarily mean much. My mother does not participate in any social activity. She eats most of her meals in her room. I have to insist that she gets out of her room every day. I just want to keep her moving other than going in circles in her room. I wish she could meet people more often. There are plenty of people and activities in her residence. I don't think it's good for her to spend her days thinking how uncomfortable she is.

It's very hard to tell, but I think her mood has a great influence on how she feels, and she seems to me like she is stuck in a vicious circle. By my answers, you can tell she has potential to still do and enjoy some things, but she's not doing anything. I know she does not feel well, I want to be understanding, I cannot imagine how she feels. But I see she could do things, and she doesn't; and in a while she won't have that opportunity anymore, even if she wanted to. If she were happy as she is, I would not try to push in another direction, but she's not.

Marie.
Mim
 
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Re: Questions on PSP symptoms and medication

Postby Robin » Wed Jun 27, 2012 11:48 am

Marie,

One reason "Rivotril" comes up not as much as Ativan is that we don't use this word in the US. (That was why I asked you where you lived as the brand names you used are different. Thanks for providing the generic names.) Clonazepam = Klonopin.

I think you have the good "sleep hygiene" right. You can do a search here on that term with username "robin," and you'll probably find an article or two on this topic.

Robin
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