Hi, my mom (77) has been diagnosed with Parkinsons and several other conditions (Asthma, Arthritis, polymyalgia, Hypertension) several years ago. She also had the issue with walking backwards, has fallen sevearl times and bradykensia (jerky movement when trying to move forward eg into a lift). In the last 12 months, there has been a detioration in her voice, her swallowing, she had a cat scan and was diagnosed with PSP. She is on alot of medication and is unsteady in her feet especially when turning around. Last week she was visiting me (we brought her over from Ireland) and she fell down the steps and cracked a rib. They just gave her painkillers and sent her home. I am trying to find out if there are PSP support groups in Sweden (have emailed a few links but no reply) or what support is available for someone when in another country suffering from PSP? Her health insurance will pay for emergency events but the day to day support I am not sure what to do. She also has these freezing moments and hot sweats and I think she blacks out during these. If I were to move her to Sweden, I have to start rrom the bottom with getting her care and in the system, getting all the multi-disciplinary support as well...(speech, physio and it's in another language) has anyone any advice who did a similar move and what do I need to consider? I currently work full time and there are three small kids in the house too. She has a stick and rollator but doesn't use these all the time. Thanks T
My mom just fell while in Sweden - PSP Association
My mom just fell while in Sweden
HI, devdov. Sorry not to have any advice on the international aspects of your problem. it's tough. All I can suggest is that your mothers condition is not going to remain as it is, and you and she need to prepare for the long term. The falling will get worse. Does she live on her own now? Can she get into an assisted living, or nursing facility in Ireland? In Sweden? I would be concerned about the language issue as likely to add to your mother's communication difficulties and future isolation.
I really feel for you. There are no perfect choices. I wish and your family the best possible. Peace, ec
Thanks she lives on her own so having seen her fall on a daily basis here I really am not comfortable with her living on her own secondly she is still very lucid . I think the only option is her staying her and trying to find Supra in English but will need to register her here and she her up. Would be great if there was a list of international specialists so I could get a second opinion on her condition and what medications they recommend. When we went to the hospital they didn't recognize any of the medications from Ireland. I am going to try the weighted rollator, we have a rollator for her but it's not weighted down at the front. She ha ps these episodes where she freezes and gets cold sweats and her eyes freeze ina stare, she can unresponsive fr a couple of minutes. Is this a symptom and what can you do?
I don't see anxiety when we mention events she gets excited and is happy to be part of the event. Her voice is low though and muscle tone isn't great for swallowing. So need to ensure food is ok for her.
Thanks for the reply.
Treasa
The speech therapist we first saw 5 years ago helped a lot with exercises for swallowing. My guy became more mindful and the choking has been held at bay pretty well. I wish we had begun speech therapy, for speech itself, much earlier. The sessions were wonderful in bringing his abilities back for a time. The lack of communication now is heart-rending. Check out LSVT Loud online. If you can find a therapist who will help you with exercises, I recommend that as an ongoing effort.
The freezing, sweats and staring episodes are not uncommon. My sweetheart has had them. Frightening at first. Tizanadine, a prescription neural relaxant, given at the time helps sometimes.
As far as medications go, everything available now is aimed at symptom management and everyone has a unique disease progression, so these will differ. There is currently nothing you need to worry about getting for her as a treatment for the disease itself. (The recent breakthrough involving trazadone gives hope, though.) Having access to a specialist is reassuring, and one might recommend trying some Parkinson's meds, as a few patients respond well to them, but having a decent GP with awareness of geriatric issues is more important, I think. We liked our neurologist, very much a PSP expert, but wasted a lot of time traveling to see her and experimenting with drugs that did nothing except reassure us that we were trying.
My guy has never used a weighted walker, but went through several varieties. Whatever she has, I think the most important factor is getting your mother to use it before she feels she needs it so that relying on it and managing it handily become habitual.
Best of luck with everything. You have a lot on your plate. Take care of yourself, too.
Peace, ec
Thanks so much very helpful to know these are not uncommon side effects. The strangest thing is that each day is different, at the last two dinner events we had she had a choking episode, she is also falling when turning mostly. I think speech theraphy is vital actually. She has a stick and a rollator but prefers the stick I think, for long distances she brings the rollator. She is on parkinsons meds but her Irish Neurologist took her off Sinimet and now is on Madovar, which she feels has helped her walking (not sure if it is the Madovar or if it is not taking the Sinimet). She never had the shake in her hand but had the bradykinisea (feet get stuck and move up and down without going in any direction), which has more or less disappeared now, its more that her turning is slower.
Hi, devdov. Interesting that the bradykinesia has faded. It was true for my man that symptoms came and went, or sometimes he may have adapted to them, or they may have been overtaken by worse. His ability to describe how he is feeling having been largely lost, I can't say at all about some of them. His vision bothered him greatly, and he was frightened of going blind. He can't focus his eyes reliably now, but seems to accept it. He stands and stares out the window, and the aides and I talk about the weather, the birds at the feeder, the chipmunks and squirrels and flowers, the season's progress, and he seems to share in it, but he rarely indicates that he is observing anything on his own.
Hi devdov ,sorry to about your mother and her problem with psp,my wife has psp.one supplement we are on is organic virgin coconut oil which helps with brain function, as we live in new zealand there in no psp support group. my wife has a walker which she pushes its weighted down with books and her can fall while turning.when she goes down stairs i have to be in front of her.,one other supplement you can try is amitriptyline 10mg which can help,check with doctors first.all the best Peter
Thanks Peter will check with the supplements you suggest. Do you use coconut oil in tea instead of milk or how do you use it, how much do you need a day? Thanks treasa
Hi devdov ,you just have your normal cup of coffee, tea,milo i add 1 teaspoon and stir it ,it can float at the top . you have to use organic virgin coconut oil and i use cooking coconut oil for frying so l get a double benefit
Getting worse?
Speech
Progression ,still no cofirmation
experiences with care homes for residents who have PSP
I think my Mom has PSP
