My husband was diagnosed with PD 4.5 years ago but had symptoms many years before diagnosis. Now, he has PSP and everything is changing. His speech has really gone downhill and he’s starting with swallowing issues.
I’m a retired RN and feeling anxious and overwhelmed. I feel so badly for my hub and only wish I could do more. He has major gait issues, falling etc uses a walker has a tough time recently getting up from a chair etc.
The PSP scares me because of all the choking etc. I just hired an agency to come in 3x weekly to do bathing as I’m feeling like I need to distance myself a bit.
We’ve been married just 4 years and yes I knew he had PD. This whole journey is so depressing and I’m really trying to be as supportive as I can be.
Today the MD suggested I give hospice a casual call so I’m more informed and we can make a “plan”. They all seem to use the word plan but my husband doesn’t talk much, is totally apathetic, etc. He said since there is such a shift in his speech that things could progress rather quickly????
ANY advice would be greatly appreciated!
A million thanks,
Betty
PS this is my first posting
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Bettina545
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Welcome to the site. I feel your MD is giving you good advice. Since you are a RN you've probably been around patients with progressive diseases. If you haven't, now would be a good time to discuss your husband's wishes in regard to medical procedures he'd like or not like.
Dad, Dx CBD, had apathy but he made clear his wishes. If your husband's speech is deteriorated badly try some form of hand gesture for yes and no answers.
It may be time to consider a wheelchair, for safety. Try going to mechanically small food texture, slightly thickened liquids for the swallowing issues.
There is no set timeline for when a symptom will manifest. This makes it hard to say what stage he may be in. As a RN I'd say trust your experience.
Welcome to the site, sorry you have had to join us but you will find masses of helpful advice and support here.
Are you in the USA? We are from all over I am in the UK and also an RN. Your background will be helpful in forward planning - that’s what we do!! Ron gives good advice now is planning time get things in order. Good to hear you have started to get some help in - impossible to do everything yourself.
Has your husband had OT, Physio and SALT assessments - these will be so helpful. My hubby diagnosed 5 years ago with PSP and the therapists have been great at helping with strategies for getting on with life - communicating, moving etc.
If you have specific queries please just ask there is always someone who has had similar experience . You can also use the search option in Right hand upper screen area which will show you old post. Everyone progresses a little differently - my hubby”s Speech has been a challenge for years not always the best indicator of progression.
Look after yourself too - keep up with your friends as much as you can.
Thank you SO much for your sweet note and words of inspiration! Yes, we are in California. I’m a retired RN but feel as though I’m still working! I’ve really let myself go~ I need to exercise lose weight 😩 and somehow Jeep my own life going.
Sorry SALT is Speech and Language therapist- they can assess swallowing and help with communication. As Jeff says you get used to the coughing and choking and learn to recognise what is normal and when to worry. I guess that is the same for all areas of life with PSP new ‘normals develop.
Sending lots of love Tippy
Welcome. The choking is scary at first. For me I now know what is “normal” choking and distress choking. As long as he is able to breath he’s OK.
Get all your legal stuff in order like wills, legal and medical power of attorneys plus advanced directives together.
His heath may be good for a number of years to come. Everyone declines at a different rate.
You will want to get a lift chair to make it easier on you as well as him on getting up. If you have stairs in the house a stair lift is good to have as well.
Is their any support groups in Canada can you list who to contact? Do you know what is worst to expect I would like to be prepared . My oldest daughter not dealing well with this. Avoids dad having him over. Any idea how long they last with this?
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 am sending you our particular experiences on PSP-RS that we hope you can find useful.
Hi Bettina, which part of California are you in ? There is a great support group here in Northern California, but this site is a life saver. As others have said, don’t hesitate to ask anything.
I am in exactly the same boat,this cruel disease traps both sufferer and carer.All the replies are packed with good advice from people who care.If you have family and friends that can help you directly that would be a bonus.I have found that this forum can answer questions that most other sources can't.It's easy to let things get on top of you but if you can deal with things one at a time it might help with the panicking .
Progressing from mild to severe in the short space of a year or two.
The diagnosis is still in its infantile stage, and treatment is primitive, and depends more on the Doctor's gut feeling as no procedure has been found except leaving the patient and carer to their own devices. Anything we do is right.
In India, the doctors haven't had sufficient exposure to be having the expertise in diagnosis and primary treatment of PSP.
In India we do have alternate medical systems like Ayurveda, with its expertise in treating lifestyle diseases. I use Natural health system for my wife. though I am nowhere near a cure, my wife has not had a single episode of pain, fever, coughs or cold etc, or inflammatory issues. Her medication is taken across the blood brain barrier with coconut oil. No need for intrathecal injection.
Physiotherapy with Ayurvedic physiotherapists also helps.
My uncle's nuro changed his diagnosis of him from Parkinson to PSP. I started him on high dosage of Thiamine HCL. My aunt said it is helping him - less falls, stronger over all. He seems to be more stable for now. He has this condition for over 4 yrs.
Good luck and all the best. Remember to take care of yourself too.
Look at the top of the page: You will see a little picture of two overlapping bubbles and the word Chat. Click on that and a private message screen opens up. Click on the blue button that says Compose. A new message screen opens up. Where it says "To" type in my user name raincitygirl then in the space below write a message.
I probably won't be checking messages now until about 5pm Pacific Time, (I'm near Vancouver) but we can connect over the next day or so
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