Symptoms masked

[Caz49]

October, 2015 my husband, TJ fell off our front veranda dislocating & fracturing C6/C7.

Was active plumber, civil engineer, blacksmith. 14 weeks in local hospital -underwent 2 operations, bone graft, screws, rods and cage- diagnosed with R frontal lobe traumatic brain injury. Transferred to rehab hospital in Sydney (2.5 hrs) away for 4 months - SPC inserted. Transf to local private hospital. Physio had him walking short distance on a walker. Home after 10 months in hospitals. As mobility decreased had day program 2 x week on and off.

After respite of 2 weeks all mobility gone. Catheter bag not changed in 2 weeks leaving him with bad UTI. Admitted to private hospital for rehab & discharged after 7 weeks .Attended day programme & spinal cord injury physio.

3 weeks later diagnosed with PSP - late stage - by neurologist after 6 month wait. Emotions - shock, grief, sadness, bewilderment just a few.

Spinal cord injury masked early symptoms. Glad we didn't know earlier. Had hope early but now take one day at a time.

4 days later admitted to hospital with aspiration pneumonia. Asked if we wanted to rescusitate. Answer NO. Not prolonging the inevitable and pain.

PEG inserted as had panic attacks eating & drinking due to coughing & choking.

Now at a private hospital awaiting equipment for coming home. Do I rent or do I buy?

Cannot swallow, speech all but gone, sleeping more than awake.

Still don't know what to expect, length of time left etc. I lay awake trying to come to some perspective resulting in more sleepless nights.

Just writing has helped a little.

Thank you all for your patience in reading this quite long post.

Caz49

[doglington]

Oh, what a dreadful time you have had. I'm so sorry. And to end with the diagnosis PSP . Its a nightmare..

I wish I could say things will get better but I can't.

Others who have had a PEG will advise you. My husband declined one and he died. It depends on the quality of life he can have, I think.

Please keep in touch. We can't change anything but there is lots of experience in coping here - and lots of emotional support.

Its an awful place but you will survive.

A big hug from Jean xx [ in UK]

[aliciamq]

Wow, Caz ~ My heart aches for you 😕 Wishing a moment of peace here and there😐My husband is a Plumber USA - Thankfully,he can still tell our sons what to do ~

[Nanny857]

You and your husband have been through a nightmare and then to receive PSP diagnosis, my heart goes out to you. As Jean says, keep in touch, there are a lot of experienced carers here. Best wishes Nanny857 x.

[Marie_14]

Caz how awful for you both. My husband had a rare Leukaemia, and when I asked why he was walking so strangely I was told what did I expect as he had Leukaemia! I just knew there was something else wrong although I had never heard of PSP then.

You asked if you should buy or rent equipment? Based on how you have described your husband now I would rent. Unless of course you can get equipment from the OT without having to pay for it? The contrary argument is that people with PEGS do seem to last longer. Not always true of course but they normally do. My husband didn't want one. If your husband is not taking food now even with a PEG then it doesn't look very good to me.

I am honestly amazed at what your husband has gone through. Leaving him to get a UTI because of such poor care has to be the last straw. I hope you have kept notes of all this as these so called hospitals should be sued! Most are private too? A lesson there for all in the UK. Your post is one of the worst I have read, although we had another a few days ago of a poor man suffering from so many broken bones because of falls.

Take good care of yourself. We are here for you and your husband Caz.

Anything else you need to know please ask.

Marie x

[cameoboy11]

So sorry to hear of all your problems. Whether to buy or rent ? Depends on costs involved. You do well! Jo x

[Katiebow]

Oh my goodness what an absolute trauma for you both and for it to end with diagnosis of PSP is almost unbelievable but unfortunately PSP is a law unto itself. Some of the care he received is disgraceful and I would think you will be glad to be able to ensure he gets the best care possible after such a traumatic few months. With regards to buy or rent I think I would be inclined to rent, It would appear that your husbands condition is fairly advanced and buying all of that equipment will be costly.

Keep on this site for advice and support, worth its weight in gold.

Love Kate xx

[Beads0122]

Welcome to this forum. As you said, there is something comforting about just writing about the struggle. In addition, you have found others that truly understand what you are going through and provide a depth of wisdom having been faced with similar situations. Although family and friends are supportive, they really dont understand like the people here. Thoughts and prayers with you,

Bobby

[Tippyleaf]

What a rollercoaster of a year you have had. Welcome to this forum you will find lots of support and brilliant ideas oh and people who actually understand the challenges of PSP

Take care of yourself as you embark on this PSP journey.

Love Tippy

[Caz49]

Thank you to all for your replies. It helps knowing someone understands and cares.

TJ is still in hospital and his overall condition has improved a little. The PEG has made a big difference to him. No more choking and coughing causing panic attacks. He is now able to stand with the help of an "Arjo", which the doctors explained was because he had had so much physiotherapy up until he went to hospital. They are hoping that he will be home as soon as equipment is available. I know it is going to be a full time job, but I'm looking forward to getting him home.

Thanks once again.

Caz49

[Allan924]

Hey Caz

I have just read your recent experience. Can you tell me your suburb?

Your hubby is obviously a pretty tough cookie with all that he (and yourself) has been through

PSP is a rotten disease but I just try to keep Baz smiling and take him places while we are still able..best wishes to you