As I read the posts daily I can identify with each of you. My mother was diagnosed with PSP in December of 2008. She was cared for in assisted living homes until July 01, 2012, when I brought her home to live with my husband and I. She has progressed through the stages and is currently settling into stage four. This leaves her with no ability to communicate, walk, eat independently, etc. I find myself simply trying to stay one step ahead of the symptoms. She has had TIA's, horrific falls, etc. Her current physical symptoms include rigidity on her left side, her left arm completely atrophied to her chest, clasped hands, an indwelling catheter with chronic UTI's, severe headaches, changes in her eyes (the left moreso than the right), either spaghetti legs or rigidity, difficulty sleeping at night... I'm sure the list is similar to many of your lists. I have a woman (who is a saint) come in the evenings to get her ready and into bed and to give me a break.
I am ordering a Rifton Tram lift today to assist in transferring. This task has become so difficult that it is now a safety issue. I am hopeful that it will allow us to get her up and from point A to B with minimal difficulty. Since mom weighs 50 pounds more than both her caregivers it is daunting to manipulate stiff arms, legs, etc. from one point to the other. Although the lift is expensive it is the only way to keep her in my home. My intent is to keep her here until she passes away.
On our last trip to the physician we got a prescription for morphene which has helped with the severe headaches. I was beside myself as I did not have anything to treat the pain. I felt completely inept. She also prescribed Baclofen (a muscle relaxant) which has significantly improved mom's ability to swallow. That was a gift that I was not expecting.
I want to thank each of you for sharing your experiences and ideas. This disease has many facets so trying to treat the symptoms gets more difficult as each week passes. I continue to try to deal with the disease proactively and am so frustrated when I am not able to help her.
Strength to you all!
Kathy
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Sugardart
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From one Kathy to another I just want to send a great big HI and a cyber hug!!!
I'm guessing, from some of the things you say, that you are in the States? Every time I read posts from PSP "family" across the pond it makes me realise just how lucky we are in the UK. We may have to shout and keep asking but we do usually get the help we need. For example, Mum has an electrically operated hoist and bed. She has a special tilt-in-space shower chair/ commode and we are just waiting for delivery of a very expensive tilt-in-space armchair. We haven't had to purchase any of these items - they have all been provided, free of charge, by our local Social Services. I'm sorry you have to buy the essential aids you need
I'm so glad the Baclofen has helped things.
I think you are doing a brilliant job and your Mum must count herself lucky to have such a caring daughter.
Hi Kathy, we are in the UK too but we have been told that any equipment that costs over £1000 we would have to fund it ourselves, can you give me a bit more info on how you managed to get these for your Mum, many thanks xx
We had an excellent OT and community neuro team led by a specialist community matron. The OT had to complete a comprehensive report to make a special case for each “non-standard” piece of equipment we had. However, this was all sometime ago now as Mum passed away 3 years ago. I still can’t believe it’s that long!! I don’t know if things would be different now but I would ask for a Complex Specialist Seating Assessment - I think that’s what it was called! Good luck!
You are an angel to your mum. It is hard work but it will not be forever and you will know, as I did, that you will have done your very best for your mum. Terminal illnesses do not have to be miserable and we all endeaviour to make it the best we can. I wish you well and send hugs to your mum.
Thank you both for your words of encouragement. I am glad that people in the UK are able to get the medical equipment necessary to keep someone with PSP in the home. You are lucky! We'll carry on.
Believe me, we are very well aware of how lucky we are and are extremely grateful for both the National Health Service that means Mum can see the experts she needs to without worrying about insurance or co-pays; and for Social Services who have a duty in law to provide assistance for people in need. As Kathy said, we may sometimes have to shout and jump up and down a bit but the help is usually forthcoming eventually. Having said that the service is not always consistent across the country which is something we need to work. Hopefully the PSP Care Pathway will go some way to resolving that.
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