My name is Rob and I care for my wife Mary who was misdiagnosed with Parkinson's disease in August when she had reasonable mobility and function. Because she was awaiting a MRI and DaT scan she was not able to take the prescribed low dose of Levodopa until mid October by which time her condition had deteriorated to such an extent that little worked properly below the waist and she had to be admitted to hospital. After increasing her medication including an intravenous vitimin "bomb" she has stabilised but very imobile and cannot be left alone. She is incredibly brave and accepting of her condtion but I am angry with the medical experts who seem to group elderly conditions under one banner. It was the Ward Consultant in hospital who identified the real condition and not the neurologist who expected her to wait 6 months for a follow up referel. I am very angry.
Why : My name is Rob and I care for my wife... - PSP Association
Why
Sorry I can't do anything to help you Rob except to say I share your anger, it is totally unacceptable. We too are unimpressed with the non-specialist neurologist who has seen my husband a couple of times. He has a big ego, clearly thinks he knows it all and just as clearly hasn't a clue.
I hope someone with longer experience/more knowledge of psp will be able to provide more constructive advice for you, they are a fantastically supportive group of people. Meanwhile a big hug from me, hang on in there.
I’m sorry your wife has now been diagnosed with PSP. Unfortunately, many professionals are still only vaguely aware of this condition although perhaps we should say fortunately as I would hate as many folk to have to live with PSP as those who live with Parkinson’s at the moment. Some live with the wrong diagnosis for more than two years. I don’t think the fast deterioration of your wife’s condition would have been any less if she had been given Levodopa. When my husband was first diagnosed he was prescribed it and returning to the neurologist 3 months later, the condition having progressed confirmed in his mind that it was PSP not Parkinsons. No other drugs given during his life really helped. Some reduced symptoms but all had side effects so he was mainly drug free for the last 3 years.
Living with PSP is hard for everyone close to it. Many things that happened over the 6 years I nursed my husband made me angry and frustrated. If you are in the UK there is a lot of help out there and many good, kind helpful people, professionals and friends but unfortunately there are also some who you will feel like exterminating, who don’t seem to understand, don’t listen and who have to stick to some idiotic rules written by people who know nothing about PSP. My survival tactics were that if I could do something about the situation I would Chanel my energy; make phone calls, write emails, demand equipment, make sensible suggestions (which were sometimes acted upon) improvise if equipment wasn’t available but I tried not to hold onto anger or worries about things I had no control over. Life was like a roller coaster with dips and troughs and plateau’s in between. Just as I got used to dealing with the situation it would take a dive, improve slightly, become the new norm and then Wham! another dive and another norm to get used to.
Try to save your anger for when you can use it to make a difference but let go if you can’t. Hopefully you still have time to make good memories. It’s hard but possible. My husband knew everything that was going on and understood all I said until the end so I tried to make life as good as it could possibly be for him but it was hard.
I hope and pray that soon there will be a breakthrough in the research that is taking place. My husband’s brain and spinal chord donation will, apparently, be used for many years. I just hope it won’t be needed for long as the scientist work hard to find a reason and a cure.
Sending you and your wife a big hug and hoping you get all the help from friends, family and professionals that you need .
Nanna B
Hi Nanna B. Yours is one of the wisest honest posts I have read on this forum. My husband was diagnosed with CBD but I recognise everything you said. One of the hardest parts for me is, as you said, that the intellect of our loved-ones is unimpaired and I constantly feel the need to assure him that everyone is doing everything they can to care for him. It is difficult as he can no longer communicate. I also assure him that work is going on all over the world looking for a cure. He has also arranged to donate brain tissue.
Thank you for taking the time to post. Take care.
Margaret
Just right, Bev. You are so wise!
I looked up wise as I’ve never felt it but did like one of the several definitions , “ having knowledge in a specified subject”. My specified subject, and that of everyone on this site being PSP, I suppose I could be wise. My wisdom has come from seeing it through from shaky beginnings right through to the inevitable end. It’s sad that so many of us have to gain wisdom in such a devastating subject.
Love and best wishes to all the wise ones, those growing and those just starting on the journey.
XxxX
You are right Bev, this is one class that I would rather have skipped. Hopefully, by passing on this very hard learnt knowledge, might just lessen the pain that learning about PSP, caused!
Enjoy Australia and Thailand, want to hear all about it, on your return.
Lots of love
Anne
Thanks Anne. I’ve started packing......my swimming costume is in my case 😀. XxxX
Have a lovely time Bev xxxx Yvonne xxx
Thanks Yvonne XxxX
Bev, many people have experiences without learning anything. Your wisdom comes from learning and sharing.
Spread your wings and fly !!!
Tell us all about it afterwards.
lots of love and a big hug from Jean xx
Invaluable advice NannaB - thank you.
Sorry to welcome you to this site. It is a tough diagnosis to accept.
Sadly there doesn't seem to be anything to help with PSP, it is just easing the symptoms and managing the situation. I agree with nanaB that there is a surplus of anger but it is wasted. Use your energy in dealing with things as they are.
We were lucky to see a neurologist who was familiar with PSP. Although that meant that we had to face the reality immediately ! Most on this site had a struggle for a diagnosis.
I can only advise that you focus on making the best of now and making precious memories.
love from Jean x
Dear Rob, I can't improve on NannaB's reply, but I would like to underline her assurance that the time between the diagnoses is very unlikely to have made a difference. Because there are some treatment options for Parkinson's but really none of certain benefit for PSP, it is perhaps better to go with Parkinson's at first. Aside from the benefit of knowing we were getting the best attention available and the comfort of a kindly charade of hopeful action, the wonderful neurologist we saw every three months for a while could give us very little.
Of course you will feel anger and fear. Be also as grateful as you can that your wife is with you now to hold and love. Wishing you courage and peace, ec
Hi Rob
There's nothing realy that I can add to the wise posts above.
Just to say welcome.
...and wishing you and Mary the best of it.
We found there were many good times to have and to share, and we still do, desoite the horrible illness.
Warmly
Kevin
Thank you to all who replied, it is nice to know we are not alone. Warm regards, Rob
I don’t blame you for being angry. I wish you luck and love.. Love,!Mary B.
Hello, Rob. I understand your pain. I recently lost my dad in a rapid 3 year decline, from healthy and vigorous to vegetated to gone. I am in US. He was misdiagnosed with Parkinson’s by 6 separate neurologists. None did Dat Scan. He did not have tremors, etc. He had a gait. They based everything solely on a gait, refused to consider he was on a fifth prosthetic hip that had checked positive for infection at the ortho. Needless to say, doctors would not listen to me as I told them about the overnight onset of symptoms that changed my dad and led us in for inquiry. Nothing made sense to diagnose as Parkinson’s. They forced my dad to take all the levadopas, etc., even though we reported that the meds made him much worse and extremely coma like accompanied by seizure-like reactions. My dad died UNDIAGNOSED, but in the last MD appt, the Movement Doctor admitted it was not Parkinson’s. By then, it was too late, impossible to travel him 1000 miles to doctors for rare neurological conditions.
A few things we implemented ourselves showed positive outcomes, but could not undo or counteract the poisons of the Parkinson’s meds. I highly recommend “The Brain Maker” book by Dr. David Perlmutter. Follow his protocol. Also, if Mary has to use a PEG tube, do not use those nasty Abbott foods. Get organic whole food, Liquid Hope. We ultimately converted our family room into a critical care room with hospital bed, supplies, equipment, oxygen, etc. We nurses him around the clock with tube feedings every two hours. We had to do so because the professionals were doing EVERYTHING wrong and expediting Dad to his grave. Please follow your own judgment. Get that book, watch YouTubes, research, coconut oil and MCTs are very important. Integrative medicine is the answer and is what aids our bodies in healing, not egotistical, undertrained doctors that pump sick people with arsenic. I am not anti-medicine, but good heavens, use it correctly if you must use it. I hope this helps. I will sincerely pray for you and Mary.
LC
Dear LC, thank you for your sympathy and advice.
Dear WR we were fortunate that the neurologist spotted that Ben probably has PSP because of his lack of eye movement which he had from early stages. He was a year into symptoms but the GP was sending him to ear nose and throats clinics and scans to look for tumours. Parkinson's nor PSP were ever mentioned. It was a dear friend who said I ought to ask for Ben to see a Neurologist and he spotted it on the first visit. The Parkinson's drugs never helped Ben at all although I think they can have short term benefit. I fully understand that you feel angry and frustrated as you watch her decline and there is nothing you can do. I feel resigned to the fact I can't help to heal his condition and all I can do is care for him the best I can. I sometimes feel sadder than sad, lonely and frustrated that I can't understand what he is trying to say to me, what on earth is he feeling!
Sending love and support
Kate xxx
Hi Willow_rob,
In short these are my experiences on PSP disease expecting they could be useful :
If physicians agree that there is suspicion of a Parkinson like neurological disease (PSP, CBD, etc.), then I suggest to start an intensive and systematic - gymnastic program as well as walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction.
Bearing in mind that a Parkinsonian patient become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.
2017-12-15
So far PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone it is possible achieve a reasonable quality of life, even interesting.
My wife suffers from PSP. The first specific symptoms show up in March 2012 :difficulty speaking as if she had a stone in her mouth and a slight tremor in the ring finger. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that added to the difficulty in speech and walking instability confirmed the PSP diagnosis). Dat scan between 2012 and 2015 did not confirm the suspicions about Parkinson's, PSP, CBE, etc.
In my opinion, as far as it is possible, the best place for a PSP patients is their own home. This entails the need for other assistants to help the main caregiver and the capacity to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all tasks that it carries out with it produces a remarkable fatigue physical and psychic.
In principle, the limits I have set to send the patient to a nursing home are: dementia, very aggressive behaviour, the need to apply specialized medical care or if the patient´s needs became more complex and persistent tan it could hold up at home.
The non-strictly medical parameters that the main caregiver must manage:
1) Falls (From 2008 to 2016 my wife has fallen 11 times some of them serious. From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP. A fall with serious consequences is usually accompanied by an enhancement of the symptoms and some decrease on the quality of life.
Avoid falls: Learn transfer techniques, apply seat belt, use wheelchairs with anti-bedsores cushion (our anti-bedsores cushion came from: JAY - Sunrise Medical Ltd brand.), make suitable the bathroom, set up handrails on each side of the bed, make use of an articulated bed, also use a plastic wheelchair (type ETAC) special for hygiene and shower, etc.
My wife has regularly used a wheelchair since June 2016 (Four years after the onset of the first symptom). The wheelchair is made in aluminum and is foldable, easily transportable in the car trunk (aluminum wheelchair is: Ergo Lite 2 from KARMA brand).
2) Prevent cold and flu to avoid eventual common pneumonia (pneumococcal). Vaccination for flu and pneumonia could be advisable).
3)Phlegm and choking. It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid it is important to drink fluids.
In case of choking raise both arms at shoulder height, breathe only through the nose intensely, retain air a couple of seconds and then force the cough.
The physiotherapists have exercises to improve the cough response to choking.
4) Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia” (with falls this is another very important risk). Add thickeners to drinks (water, Aquarius orange or lemon, etc.); to drink it is advisable a plastic straw with the chin as near as possible to the chest. The food must be moderately doughy and in small pieces if solid. Mediterranean diet emphasizing on fruits (peeled fruit avoiding the presence of seeds) and vegetables. Fruit compotes in small pieces or better crushed using a hand blender. Ice cream are well tolerated.
5) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (odd days), walk 200-300 meters (even days), speech therapy exercises and exercises ocular muscles. Then she/he needs to rest at least 30 '.
We have seen that laughter and good hydration (moisturizers for skin and liquids by mouth) help to mantain in good shape the face muscles.
Without any scientific basis, only observation of few nearby neurological patient cases, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.
6) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, meeting with grandchildren, snack with friends, parties, etc. After these events she needs to rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize.
The travels by car must be adapted to transport the patient and the wheelchair. High seats similar to Citroen Picasso are advisable.
The difficulty to follow the cadence of a normal conversation, being treated as a child or being the object of a special attention for his/her illness and not for the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because although usually resisting to get out of the routine at the end the person with PSP have normally very good times.
In the event of troubles to handle the food (spaghetti, salad, etc.) or in a restaurant with companion who are NOT relatives (for instance: former university colleagues, etc.) and due to the velocity in serving meals, it is very likely that a person with PSP needs help to avoid a severe delay and therefore an unconfortable situation. This can create feelings of humiliation. The next times we must try to select the type of food and attend meals in which the rhythm of the meals could be very flexible.
7) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.
Recently she pay close attention to a light after dinner to a light TV show. Surprisingly this activity has significantly improved her relaxation and rest at night.
She have had some episodes of constipation that have been corrected by applying an intensive mediterranean diet based in fruits and vegetables and helped by the drug "Duphalac" (an oral osmotic laxative).
Drops of artificial tears to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.
8) Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one from the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she indicated. Up to present time it is the best system we could find.
To say yes or not she uses now the fist and the thumb finger.
We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us. Those two persons help me a lot regularly and the children help whenever they can. Also we have some collaboration from the close friends.
All PSP patients seem to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.
Various medications have been tried for pain episodes (falls). There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil (magnesic metamizol) in capsules and if the pain is acute Nolotil in glass ampoules orally. All these treatments under medical supervision.
Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the few occasional doubts or small emergencies we are guided by physicians who are a relative or close friends of us.
We found great help information in the comments of the members of this great association -HealthUnlocked-. Also the web "CurePSP": psp.org/ is a big help.
Releasing the caregiver and allowing him/her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a PSP patient is progressively taking additional tasks. To the personal previous work (when the disease had not been shown), must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance of people who share the help team. A special and continous attention must be directed to the main caregiver and his/her medical history.
The bottom paragraph isto remember that the main caregiver jobs and occupations grow at the same time as age..... without an important help is very difficult to carry out all these activities without suffer a severe wear down.
From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least, a week of holidays each six month is advisable.
I hope and I wish these notes are useful.
Thank you for your comprehensive notes some of which I am already actioning.
Wow, VERY VERY helpful. Thank you for the time it took to cohesively write it out.
Luis, I think that because you live in Spain (A Spanish speaking country with the cultural support) that has contributed to your wife's stability. What do you think?
Hi enjoysalud!
As you know in Mediterranean countries, the family has an important cultural and sentimental position. The Christian tradition also influences.
Generally, unless the necessary medical care reaches very specialized levels or the situation is impossible to maintain, it is normal to keep this type of neurological patients at home and have a primary caregiver who manages the situation with the help of other contracted caregivers as well as of family and friends. This is what I see around me.
The writing you refer to has been modified to the extent that our own experience or that of other members of the chat has been advising me. I send you the latest version by private mail.
Thanking for your message and hoping that our experiences and solutions will be useful, I send you a solidary hug.
Luis
I agree, that home care is better than facility care....ESPECIALLY IN A SPANISH SPEAKING COUNTRY. What caught my eye was was #6 evening city walks. I remember my trips to Spain and Mexico...everyone being out for an evening walk.
My dentist's aunt's husband had PSP, and his wife moved them to Mexico. That was impossible for my son as the first three years we thought he had Parkinson's and had a good 20 years ahead. Three years later it was re-dx as PSP and impossible to consider a move. The affection from the caretakers would have been wonderful, not to mention the low costs of medications and care-taking. All that being aside, I am glad for the things I did, and the things I didn't do. One time I totally lost my patience (my son was ambulatory and the bad stuff had not set in). We were doing exercises together with a ball and I got upset with my son. He got up from his chair and ran into his bedroom. I felt AWFUL. I went in there and asked for his forgiveness, which he gave me. Now looking back, realizing he had PSP, I am doubly sorry. I do miss him.
I will read my private mail that you have sent me. Thank you for your response and the time it took.
Margarita
I’ve had my own history of medical horror stories. When Larry started to have problems he went through a year and a half of tests before I took all the results and went elsewhere to get a correct diagnosis. I’ve learned doctors are only human and prone to error. Not that they would admit it. Medicine is a crap shoot at best.
So Hospice begins
How Long Did Diagnosis Take?
A Frustrated Carer!
