My wife is still in the first stage of the disease but there are things going on which I'm not sure about.She has lost all pride in her appearance and despite having 3 wardrobes of clothes,she will always wear the same old clothes.I have to nag her to wash and shower which she will only do if we go out to keep an appointment.She relies on her hairdresser to wash and style her hair which can get quite expensive when it is every week.She has always felt the cold but nowadays it has become extreme.No matter what the weather is she is wrapped up in several layers plus her dressing gown.I am expecting to use double the amount of heating oil than previous years and the price of oil is always going up.
Can anyone else relate to this behaviour? Acorneater.
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acorneater
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Hiya. I cannot comment on how a lady feels with PSP but I am sure that you will get responses but she could be very depressed which would account for the lack of interest in self care/appearance. Maybe you should seek advice form your GP? My husband has CBD and he was always the hot one of us two but he too now gets cold. I know that he is not active now but it does seem that his heating mechanism has gone up the creek and his hands are always cold. Maybe you could ask a lady friend or female relative to go through your wife's wardrobe with her to find the warmer clothes and take the others out as I know that Nigel cannot deal with 'choice' now. All the best. Good luck. AliBee xxx
Hi acorneater, Totally agree with Alibee's comment! Depression was my first thought too.
Equally, your wife will probably not be able to make easy decisions about what to wear, so, yes, find one of her good friends to sort out warmer clothing and perhaps give you a list.
Or remember the outfits your wife loved to wear! Get a few tips on hairdressing, makeup and accessories, and help her - if she will let you! Give her some compliments! That may also help her to feel better.
I remember my husband being my saviour when I was going through a very low period. He took me away for the weekend ( kicking and crying though I was!) and spoiled me. I came home in a better mood and then went to see my doctor.
You don't have to have PSP to feel like she seems to be feeling! Deep down, no doubt she hates what is happening to her, and probably needs reassurance from you of your love - and a bit of help from her specialist. Just check there are no side effects from what she is given!
Thanks Jen,she takes antidepressants but to be honest I don't know what medication is working and what's not.She has a medication review coming up ,fingers crossed.Acorneater.
Sounds like depression which is understandable. A mood elevator might help. Hard to say. Talk to your primary care giver.
Larry was always cold. Now he is colder. The heat is set at 68F for the winter. He’s still wearing a fleece top and has a fleece throw over him until it is hot.
Your post takes me back a little. The year before his PSP diagnosis my husband lost all pride in his appearance. He stopped showering and shaving and wore same clothes for days. This was a total contrast to previously- he had always been a smart dresser. After diagnosis and 2 different antidepressants this improved a little and he took more of an interest in his appearance. Difficult to know if it is the PSP or associated depression.
Encouragement and compliments helped with my husband. I like the idea other suggested of getting a female friend involved.
PSP changed our lives totally. Not only on the plans for our future, thinking we were going to start enjoying Davi´s retirement (he was 63 onset date and I was 50) but also I have a disable person now. I feel like having a new born now who depends on me 100% but instead of seeing a progress a see a daily decline. It has been 5 years now in doctors appointments, tests, emergency room, falls, chocking, constipation, judgment, apathy and so many changes that I understand now he is a different person now. I wish things were different but "it is what it is" and I have to accept this new person in my life. I can not go back to look for the one I married one day because he is gone. It is not easy but if there is a female friend or relative who can help her changing clothes and bathing it helps. I push David every day to take his shower early in the morning and get dress, shave and I always tell him how handsome he looks. He smiles. PATIENT and LOVE and take one day at a time... My love to you and to the PSP family, Patty
Agree very much with the other comments, it sounds like depression, which if she is on anti depressants the dose or the type might need to change.
The comment about choice rings very true to me, Mum can be having a fairly normal conversation but give her a choice & she's floored, whether it's what to wear, do or eat. I put an outfit together every day and leave out for the carers in the morning. I show it to Mum saying I think she looks nice in this, would she like to wear it and she always say yes. So perhaps that friend could co-ordinate some looks for you, you could take photos, so you have a reference for the future. And offer one selection a day with a little positive, suits you, brings out the colour of your eyes, etc etc.
As to the hairdresser it was always a family joke that Thursday mornings were sacrosanct as Mum went to the hairdressers every week, as far back as I can remember. Now the hairdresser comes to see Mum every Friday. If the cost is a problem, is there a cheaper hairdresser she could go to? I get very cheap haircuts by going to the local college, it does take a long time and you get a different person each time, but maybe there are apprentices at your wife's hairdresser who would be cheaper.
The best thing I found for cold hands has been a muff, also good for keeping a supply of tissues at hand! How about some thermals for a light weight warm layer, there are some pretty styles available nowadays.
I understand exactly how she feels. I was diagnosed nearly two years ago (cbd) and until I started Sertraline about four months ago I was pretty suicidal. It has helped me at least make sure I wash and dress each day-it would be so easy to just stay in bed. As for clothes I take the view why wear good stuff if just sitting around at home all day. So long as she looks nice when out what does it matter?
Best for her to be comfortable than worrying, especially if she has ‘accidents ‘ now and then. Does she take any meds? I have Madopar which helps a bit with moving but there’s nothing to stop this internal shaking and like others have said limbs can get very cold. I too wear a fleece mostly and dressing gown at night though it’s not so bad since the better weather has arrived. My gp referred me for an exercise class which although hard( for me) gets me out meeting others. Would something like this help? Taking herself out of herself may help. I also go to a day centre at our local hospice once a week, could she do this? Again a referral would be needed. Is she able to use a rollator, as this again would get her out.
Remember both your lives have now completely changed and neither of you have asked for it! Hope you can get some positives from this! Hugs Jayne xx
Hi jayne..my mums speech is almost gone with CBD..diagnosed 18 months ago and since xmas gone downhill big time..her walk is now a shuffle...any recommendations..shes a veey glamourous 73 year old..
Has she seen a speech therapist? Mine give me lots of tips and there is an App called ‘ verbally ‘ which I use on my IPad when necessary. My speech has got stronger with exercises as it was very soft and at times almost nonexistent.
As for the shuffle,my physio gave me exercises to help as my left leg and foot were ‘alien’. From a sitting position, stand up,get your balance,then slowly turn and walk right heel toe,left heel toe. I can now walk relatively smooothly,but as with everything it takes a lot of hard effort and determination. I am not ready to give up at 61!! Also the Madopar helps! Jayne
Speech therapist has stopped seeing her she said theres nothing more she can do for her...her speech is slurred and forgets words...your so positive..keep it up ♥️
Seems all the professionals can only give a certain amount of their time which is understandable. Once my physio had seen me for about 8 times she left me to my own devices. Perhaps I’m not as far down the line as your mum.it affects everybody differently. I’m on various research projects under Professor Rowe at Cambridge. Anything to help so that future patients might benefit is a plus. I’m doomed so just have to take it day by day and hope they can learn from me!lol. Keep your pecker up and remember to take care of yourself if you are looking after her.😄
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I´ll send you our particular experiences on PSP-RS that we hope you can find useful.
I am not a phisicyan. My studies have a relationship with Physics, Chemistry and the Environment.
The information I´m sending you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have exception made of PSP associations chats and support to face this unknown disease.
My mum was xdiagnosed with CBD 18 months ago..she suffers awfully with the cold...we bought an electric blanket and a low cost electric fire too...evn on the sunnieat of days shes cold..i have to shower her and wash her hair and put on makeup and dress her as she cant use her hands because of the tremors...mum is on lexepro now because of her depression and lack of i terest..maybe this would help?
Hubby with CBD was always a sharp dresser too. What I noticed is that he can no longer snap or button, tie, or work a zipper. He also has a touch of OCD and he’ll spend hours trying to put a belt through all of the loops. I have since purchased pants and shorts that only have elastic waistbands. This type of clothing is more comfortable for him to wear as well. I wonder if your wife prefers softer fabrics now, or maybe she’s having trouble working the fasteners, etc.?
Hubby was having trouble using a razor with a double/triple edged blade. Something he has always been able to do on his own. Trips to the barbershop became so expensive! The barber offered suggestions of what type of electric razor I could purchase and he was also nice enough to demonstrate how I can operate the electric shaver for him. He even explained how to take one apart and clean it. I will admit that at first I found this really depressing because I realized that another one of hubby’s skills went out the window. This is a moment to cherish now though because who knows how long I’ll be able to hold his face in my hands? Sigh...
There are some Dry Shampoos on the market that you might be able to use in between visits to the beauty shop? Perhaps you could ask her hairdresser if she has any other recommendations?
A schedule might help your wife to shower? Don’t give her the option of showering. Set up a time task table and instead of “nagging her to shower” tell her “it’s time for a shower”. After the shower, next on the list of things to do, might say “ice cream”. Keep the schedule interesting and fun. I know, it isn’t easy but it might be worth a try?
As for warmth, you might look into getting a Magic Weighted Blanket. Here’s the website that describes how they work.
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