Promoting Positive Solutions
Dr. Rhoda Olkin is a Distinguished Professor of Clinical Psychology at the California School of Professional Psychology in San Francisco, as well as the Executive Director of the Institute on Disability and Health Psychology. She is a polio survivor and single mother of two grown children.
Dr. Stephanie T. Machell is a psychologist in independent practice in the Greater Boston area and consultant to the International Rehabilitation Center for Polio, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts. Her father was a polio survivor.
Questions posed to Dr. Olkin and Dr. Machell
by PHI Members in Post-Polio Health ...
Click on the Volume/Number to read the answers.
Question: Sorry NO more Memberships. For years, I have been getting the newsletter and it seems that the same old post-polio stuff keeps coming around. I have been hoping in vain to obtain definitive solutions to either FIX post-polio (I am 80 years old.) or reduce the rate of ongoing loss of muscles. Or, I'd like to learn of new medications and/or mechanical devices which can enhance my muscle capability, e.g., help me get up off the ground when I fall. Can you send me something useful? I will become a Member again.
Question: As a young polio survivor, I think the hardest thing is having a disease/diagnosis that no longer has a current social context. It is like being caught in the cultural time warp. I have a condition that is relatively cured and eradicated from most parts of the world. While other diseases get a lot of media attention and have cultural support, this is not the case with polio. I find it very hard to get support, generate empathy from others and find others who have gone through similar experiences. Have others expressed this? Do you have suggestions for me?
Question: My sister who had polio in 1953 at age 17 was affected from the waist down. She also struggles with bipolar disorder. Last winter she was hospitalized on a behavioral health floor for 44 days. Her crutches were taken away because they were considered weapons. She spent the days in a wheelchair and did not receive any physical therapy. Upon her release, we found she has lost what strength she had and now uses the wheelchair all of the time and is in a nursing facility. It is difficult to convince hospitals to allow the use of the usual assistive devices or equipment, and even more so, when it is a mental health facility. Do you have any advice for the family members who are advocates?
Question: I participate in a Facebook group for polio survivors. I want to contribute honestly, but many times my response isn’t what others “believe.” I have felt bullied a few times in the past, and just backed off. I find that I gain from it, so I don’t want to leave the group. Do you have suggestions as to how to respond in these instances?
Question: I see people on Facebook and other online groups who have a made-up name (Bracing Bill, Polio Paul), who may be pretending to be survivors. And there are groups like “Women in Braces.” Some are way too interested in braces and other hardware, and it’s getting creepy. On Facebook, one person with a pseudonym posts lots of pictures of braces; no one knows if s/he is a polio survivor or not (and could lie if asked). Perhaps people trust that everyone on FB is a good person. Is there anything our group can or should do?
Question: I worked so hard to walk again after acute polio. I have extreme pain in my hip in my weaker leg and since I had a knee replaced, my back pain when standing is also extreme. I use a cane sometimes and I know I should use a scooter or a wheelchair, but I just can’t overcome that horrible feeling of being a failure if I do. Besides that I have gained weight and if I don’t move some, I will gain even more. Help!
Question: Sixty years later I still live daily with anxiety stemming from hospital treatment, not abusive but certainly traumatic for a child. Do you have suggestions on how I can reduce the stress of this anxiety?
Question: I am dating a woman who had polio, but if you didn’t know it, you could not tell it. We are both in our late 20s and I am very interested in her. I have heard about post-polio syndrome and am wondering what I may expect in our future years if I marry her.
Question: Partner abuse has been front and center in the news lately. We asked our two columnists to address the issue for people with disabilities.
Question: It’s easier explaining things to “new” friends as opposed to friends I have had for 30 years. Old friends expect me to be the same as 20 to 30 years ago with the same energy and activity levels I used to have. How can I gracefully handle this?
Question: My husband is a post-polio survivor who will be 75 later this year. He started to experience new weakness at the age of 70. I recognize his weakness, as I am 70 and have degenerative disk problems so weakness is not new to me. I have told him to go to your website and read Post-Polio Health so that I am not always the “bad guy” bringing him information. He needs to see things himself and remain informed. Do you have other ideas as to how to approach the subject with him?
Question: Regarding the Promoting Positive Solutions column in the last issue of Post-Polio Health, Vol. 29, No. 4: I can identify with the person in the question. I also had polio as a teenager, and, like him, I am still on my own with assistance but concerned about what will happen to me if my situation worsens. I don’t think the columnists understand the problem. Loss of independence is a heavier problem than is reflected by their answers; they see this problem only on the surface. It is depressing to think about transitioning from being autonomous to depending on strangers as caregivers who then become dependent on you for their livelihood. If you are a polio survivor – you have the right to be depressed!
Question: At a recent meeting, someone found it fun to mock me as she spoke. My body is quite misshapen and the brace makes me appear to look stiff and odd. She focused on me in a friendly, humorous way as if seeking my approval for doing her performance so well. Earlier, I saw another member go through a similar act mocking a woman who is not disabled, but does have a unique way of speaking. There will be more meetings and I haven’t decided the best way to handle this. How would you suggest I respond?
Question: My brother, now 68, had polio in 1961. It affected his legs, and he has used a wheelchair since then. He lives alone, is very independent and has always been able to find a way to take care of himself. He just told me that he has lost the use of his (already weak) right arm and does not want to go on living. I told him I would take care of him, but he doesn’t want to be a burden. I am devastated – what can I do? Is there any way to help him?
Question: I am 81 and my wife, a polio survivor is 80. We are both in relatively good health, but it is more and more difficult to keep up with our day-to-day activities. I worry about what will happen to my wife when I die, or to me when she dies. The future looks very lonely. Our children (in their 50s) do what they can to help us and we have modified our home to make it more convenient. But, it still is too much. I would like your advice on how to approach this with my son and two daughters and their spouses, all of whom seem to have ideas about what is best for us.
Question: I am a 62-year-old happily married mother of two. I have a history of bulbar polio and have started speech therapy for new swallowing difficulties and problems with vocal endurance. Thus far, I have been able to adjust to every change brought on by post-polio syndrome, but this new change is really hard for me. My speech therapist is instructing me to “conserve my speech.” I am known in my friend and family circle as an outgoing person and a gifted conversationalist. I have been feeling great loss for not being able to be spontaneous verbally. I know the strategies will help in conserving my voice, but I am stuck in grief. Any thoughts?
Question: I am a 79-year-old male who had mild polio. At every annual medical visit, my doctor urges me to manage my stress and feels strongly about meditation. I have tried it and don’t like it. Sitting in a room, closing my eyes focusing on my breathing feels boring, and I don’t get it. I have read many articles pointing to the health benefits of meditating, but I can’t get into it. Is there another approach to stress management that has the same evidence base in terms of effectiveness?
Question: I am a 72-year-old widowed male. I read in the September issue about the reader whose parents didn’t tell her about having polio and only discovering it as an adult. I had a similar experience and have always felt my parents were ashamed of my polio, not just wanting to protect me, and this had a scarring effect on my self-esteem growing up. I have let this issue go, but I cannot forgive them. I feel the “they did the best they could do” explanation I have read in self-help books pushes me to forgive, which does not feel doable for me. I have been able to forget, but not forgive. Is this healthy?
Question: I am a polio survivor, single, and currently work as an elementary school teacher. I have several years until retirement. Whenever I think of the future, I can get easily overwhelmed wondering “How long can I work? Will I have to go on disability? Who is going to take care of me?” My brother urges me to“live in the moment” and not worry myself, but I can’t seem to let it go. Help!
Question: I have been living with PPS for over 4 years now. I use AFO (ankle-foot orthotic) devices and have to be mindful of rest and energy conservation. At family gatherings, my cousin tends to pick places with stairs and restaurants that require extra walking. He knows I have limits, but I feel like a nag to keep reminding him to include my needs in the plans. I am angry that he does not get it. How can I deal with this? I want to look forward to family gatherings, but now I tend to dread them.I
Question: I found out I had polio when I was 55 years old. My mother’s explanation was that “the doctor told me not to tell anyone.” Can you help me understand why this was told to parents?
Question: I am 66 and widowed for
five years. My wife was highly attuned
to my needs with polio. We had a
loving relationship for 25 years. I am
anxious about dating again, specifically
meeting and trusting someone and
also relying on someone again with
my disability. My wife had a heart of
gold and it’s hard to imagine anyone being able to replace her.
Question: I read the article in my local paper by syndicated columnist Dr. Donohue about having had polio. Who would ever be proud that they had polio? I wish it had never been published.
Question: I am not bitter because of my love of life, my family and my God, but it just gets tougher and tougher to survive and tougher on those who help me. I have children who help me and a wife who loves me but hates PPS and what it has done to her husband. How do I deal with a wife/support person who loves me but hates my PPS?
Question: I am a 70-year-old woman who is on Medicare. I have gotten weaker as I age and anticipate that I will need more assistive devices in the future. All of this talk about cutting Medicare has me feeling helpless and worried sick. What should I do?
Question: As a group leader I sometimes feel I come across as too "pushy" when suggesting a polio survivor try out an assistive device. How can I get someone who obviously needs to use a new device to try it without appearing to be too pushy?
Question: I am a caregiver of a polio survivor. At times I feel taken for granted. How can I handle this situation without hurting my partner?
Question: People in my support group are always trying to get me to talk about the past. I was in an iron lung and remember a little, but, frankly, I don’t want to remember it all. I would rather live in the present. Is this OK?
Question: I am worried about my father (and my mother). He is in his 70s, and
for the past few years, we have had trouble getting him out of bed each day. He
doesn’t use any assistive devices, but he has one weaker leg, and he was in an
iron lung when he had polio. His medication for depression is being adjusted, but
he has refused to see a psychologist or psychiatrist. He tells us, “You just don’t
understand how I feel.” Our problem as a family is this: How much should we
“encourage” him to stay active?