Robert

[Wrski]

Robert was diagnosed with Parkinson’s in 2018 PSP in 2021 progression was slow at first. Last year Robert was walking with a cane and dragging his feet. In September he began to fall daily sometimes more. He got weaker every day and finally allowed me to call a rescue. What followed was a whirlwind of days in intensive care for potassium depletion. After building it back up he was released to a rehabilitation facility. He had to learn how to stand and transfer and then use a walker. On the last day of rehab he was dropped onto his knees in the shower. Three days home and his knees buckled beneath him and has not walked sense. That was several weeks ago and despite physical therapy and occupational therapy his limbs are wasting away. He has lost 30 lbs. in 8 weeks. His hands are curled in and he suffers with severe cramping of them and his legs. I am told he he’s jumped from “stage 2” up to “stage 4”. He has to be coaxed to eat even a half cup of food. He says the food taste oily and to sweet. His speech is barely understandable and his face emotionless and his eyes are fixed upward. The medical staff is suggesting inpatient physical therapy.

Every day I see less of him physically and emotionally. He has gone from a large muscular man to what can only be described as a big belly with skinny legs and arms. I am by his side all the time and with a hoist I can move him to a lifting chair mostly laid back. My heart is crushed and my arms and back are too. I feel him slipping away but am being badgered by therapists and social workers to get him into rehab. Could they be right?

[Leosta]

Hi Wrski, sorry to hear what you and Robert are going through. The timeline is very similar to my husband's. In May he was still able, with my help, to walk with his walker to the lounge. By July he could hardly stand. Now he is bed-bound. He's been having physio but it does nothing. His leg muscles have wasted away.Personally, I don't believe there is any rehabilitation for a sufferer with PSP. It's a progressive palsy, the clue is in the name. Do the therapists and social workers even understand this disease ? Unfortunately it looks like you're going to have to educate them, as we all have to do it seems.

Sending best wishes and good luck.

[Wrski in reply to Leosta]

Thanks for your response.

[Autumnstone in reply to Leosta]

Hi Leosta, I couldnt agree more with your comments.As you state the clue is in the name of this wretched PSP. I believe Therapists OT even GPs do not really understand this condition

My husband is now bed bound, wasting away to be quite honest. Although he still has a great appetite & has been put on diet supplement drinks to help him put on weight.

His poor right hand is almost clenched now & his left hand looks as if it may ge going the same way. His speech is almost a whisper now too. SLT came with an alphabet board & yes & no cards some weeks back....

Too little too late were my thoughts. We are the ones that know our husbands/wives more than anybody & I think we just have to go with our gut instincts & our own common sense.

My heart is broken to see my husband like this & I send my love & understanding to all you caregivers❤ You are all amazing, stay strong❤❤

[Leosta in reply to Autumnstone]

Thanks Autumnstone. My husband also speaks in incoherent whispers . I talk to him about things but rarely get anything back. He's disappearing before my eyes. Heartbreaking, as you say.Love, strength and immense courage to you. 💚

[Robertdonna in reply to Leosta]

Educate them, so true! I spoke with a case worker about medication and she had him as Parkinson’s patient. I’m so glad Robert can still be amused by this. Thanks for your reply, I wish you pease.

[Bergenser]

I'm sorry to hear of this large change in Robert's condition. It must be physically and emotionally hard to deal with. I know "you should never dismiss offers of help". However you probably understand better than anyone else what is truly helpful for Robert's quality of life and what is not. So trust your instincts in this difficult phase. Sending best wishes and hugs. 🌻🫂

[45purple]

Sorry to hear Robert. I would say go with your gut instinct as to his needs at this stage does he really need rehab as it’s the progression of the illness which as we all know won’t improve. If you can get help at home to help you as well not just Robert. Karol has had aspiration pneumonia 2 in the last 8 weeks the first time he was in nearly 5 weeks as I had what they call carers stress and needed help. I see a big change in a few weeks as well. This illness is so cruel and not enough known about it. Take care 💜💜

[Sun-flowerwearer]

As the other replies have said there comes a time when we say no to some of the referrals that are offered to our loved ones. My husband has progressed to the point he cannot stand or walk without a human to support him. He cannot operate a walker or place his feet on the floor to remain balanced and yet the OT keeps saying … let’s do these exercises so we can get you walking again. I want to say .. well that’s not going to happen as it’s progressive but don’t want to extinguish hope by saying it out loud. I have however cancelled several outpatient appointments for other things I feel have no point as he’s well past certain things helping.

[Autumnstone in reply to Sun-flowerwearer]

Dear Sun-flowerwearerThat's a very good point you make about Therapists saying certain things to our loved ones. Of course you wouldnt say what you think but sometimes I think arent they going through enough??? Its heartbreaking to see how this wretched PSP destroys our lives. Thank God we have some great memories to look back on.

Stay strong & have courage❤❤

[Leosta in reply to Sun-flowerwearer]

I understand perfectly. I've cancelled many outpatients appointments too, including his neurologist who said there's nothing I can do. As you say, what's the point when nothing is going to be achieved. Why put them, and you, through all the upheaval of physically getting to the appointment.It's not giving up, it's just being realistic.

Take care Sun-flowerwearer. 💚

[TBoyles]

Dear Wrski. My husband has PSP, CBD and Lewy Body and has had occupational therapy as well as Physical Therapy for the better part of 18 months. It seemed to be helping at first but every time he was taught a new skill, within 2 weeks times he had forgotten it or could not longer do it. The therapists stopped coming about 2 months ago because now my husband cannot walk without help, cannot carry anything in his hands, cannot dress himself or fix food for himself. He is virtually is only able to lie down or sit and sleep. The progression in this last month has been so rapid that I feel nothing has really helped him in the long run. This disease is going to continue worse with time. I think of how hard the therapists worked to keep him stimulated and active but I don't think it has added a single day to his life as the brain is dying just the same. I am sorry, but I was hopeful at one time.. It is very disheartening to see the progression more rapidly all the time.

[Robertdonna in reply to TBoyles]

We have been dealing with this PSP 4 years now. It did not hit home with me emotionally until this September when he jumped from a “stage 2”. To a “stage 4” in 6 weeks. This is such a humiliating disease. I’m grateful that the mind goes as well. I am hearing words like “ giving up “ and I am hoping there is never a time to “give up”. I cannot imagine doing anything less for Robert.

[TBoyles in reply to Robertdonna]

I understand, but I have given up inside, as my husband cannot see me or feel me now and he knows he hasn't got long. He can say one to two words at a time, enough to let me know that he is aware of everything he is going through. That is what is so distressing to me. I know he understands that he is dying and yet he still worries about me. He is such a good man. He is experiencing some of stage 7 now so he is frightened and sad. This is such a horrible disease. I do have hope that maybe there will be some miracle discovery that can help those in the future.

[Leosta in reply to TBoyles]

God bless you both. I understand how you feel. Take care. 🙏

[Robertdonna in reply to TBoyles]

What is stage 7? I only know of 1-4 and end stage

[BlueSkyler in reply to Robertdonna]

I think the stage 7 is the lewy body dementia. I do read conflicting reports on this.

[Robertdonna in reply to BlueSkyler]

Thanks

[Junky60]

I was told by a social worker after a particularly difficult day dealing with medical staff after my husband was diagnosed with PSP, that medical professionals will always try to fix a patient even when things are unfix able. Your goal will be quality of life so no you and medical staff will not always agree on what steps need to be taken. Only you can decide what is best for your loved one. Is it too stressful for you and them to go to appointments when truthfully things may not improve. We opted not to do Dr appointments for them to say.. yes, you have declined more.. we could figure that out on our own. We just lived our lives as best we could under the circumstances we were given and not add extra stress.

[Robertdonna in reply to Junky60]

Kind words. Thank you.

[horseandwolf]

I past my 1 year diagnosis or PSP a month ago. As soon as my neurologists diagnosed me they had me start physical therapy immediately. I was initially going twice a week for many months but this last summer I dropped down to once a week with instructions to cycle 30 minutes a day. I bought a recumbent stationary machine. I was also told to walk up to 30 minutes a day and was told to do stretches and exercises every day. The physical therapists gave me strengthening and balance exercises. I also was prescribed a special walker to help with balance and gait. I was told not to use a cane or a generic walker. My last evaluation from my doctor was quite positive. I had improved my walking and balance. I still go to physical therapy once a week and do my exercises. I take two different muscle relaxers every day for pain and leg cramps. I have leg cramps and leg pains every night. I sleep 2 hours then I awaken, then get sleepy again and sleep for 2 hours and get awake. This goes on all night long. I am having trouble expressing my thoughts, and my memory is slowing. My physical therapist want me to start memory therapy alter the first of the year. So I think every new patient should start therapy as soon as diagnosed. As far as Robert's condition physical therapy will not be of great help, but he still needs to have therapists to work his legs and keep some sort of movement in his limbs. Movement is essential as much as possible. As for gps not knowing anything about PSP is absolutely true. My local neurologist told me if I have to go to the emergency room or the hospital to have him called right away. Even if you try to explain PSP to them they just give you a stupid look. As far as my physical therapists they educated themselves on PSP after my initial evaluation. They questioned me about my symptoms, had me walk without my walker and then developed a plan for my balance problems and strength. Fortunately they used my case as a learning experience and have really helped me continually monitoring me for any progression. So I have been very fortunate to have doctors and therapists who are supportive and caring. I know like everyone who has this disease that the progression can not be stopped and worry everyday about when my time comes that I am end up like your Robert. Stay strong and know there are people out here who understand what you are going thru. I thank God for my wife.