I need advice

[adrianna60]

How can I help my 60 yr. old beloved sister cope with PSP? She desperately wants me to tell her that she can get better with diet, herbal medicines, etc. She was diagnosed in the Spring of 2017. I've read all about Elizabeth Kubler-Ross and a lot on grief; but I cannot tell her she looks better, when she is struggling so much more than in the Spring with new challenges. I have said I pray for wellness and a cure for her, love her very much, and see that some days she has very good days. I am so heartbroken for her as I see this disease progress. Thank you for any and all advice.

[enjoysalud]

I am so sorry. I lost my 55 year old son to PSP on May 4, 2017.

In a conversation with his neurologist, his neurologist told him that "will-power would not help" or "willing it so" would not help, BUT exercise might.

It's difficult......HOPE is important, and maybe with time she will realize.

[adrianna60 in reply to enjoysalud]

Thank you so much, enjoysalud. I am so very sorry for the loss of your son. It's such a devastating disease, when one hears words like your son heard from a professional; I hear "hope" be damned, 😞; It's a cruel enough position to be placed in. Hope and love I think are so very important. Sis does exercise, but she has definitely declined in mobility significantly in the past six months. Would she be worse without the stretches, etc; who can say? She's still at the why me stage, etc.

[Kevin_1]

Hi Adriana

Some folk do not want to know if they have a terminal illness. Standard clinical practice in the UK is not to force that knowledge onto people. Some folk will embrace it when they are ready.

However people do need to get their affairs in order, but she has plenty of time so that's not urgent.

I don't know the situation you are both in in any detail so I can only say some broad things.

You might let her try different diets or supplements neither with a lot of encouragement or negativity. Remember when she is ready you do not want to be faced with, "But you encouraged me." e.g. You encouraged me in a lie. You might need to avoid saying, "Oh, you look better today."or "You are improving." or, "You are worse." Let her make the call on those things and merely smile and give her a hug.

Let her know where she can get information on the illness or print some out and leave it around. She will read it when she is ready. (PSP Association have some great information papers.)

I do hope this helps a little.

It must be very difficult for you.

Warmly

Kevin

[adrianna60 in reply to Kevin_1]

Thank you so much Kevin_1. I am not in the same locale as she--I talk to her a few times a week as we are hundreds of miles from each other. At times, I have trouble understanding Sis; which was not the case a few months ago when I last her. I think you have given me very good advice.

[Heady]

There are lots of different opinions out there. Coconut oil, turmeric, different types of food supplements. We did try the coconut oil, but I think the quantities you have to have, made it a no no for Steve. I would suggest that you give your sister the option, at least she will feel as if she is trying to do something. Which will help her feel better, if nothing else. Exercise is the only thing that does help. It won't cure PSP or even keep it under control, but it does help keep those muscles working, which has to be beneficial. I had Steve a personal trainer, twice a week. Even in his last week, she got him up walking around. He never lost the ability to weight bear and I could still transfer him with the help of a stand aid.

I think one of the most important things is, concentrate on what your sister can do, not what she can't. Get her out into the world, as much as is possible. Let her live what life she has left. Her mind is and will be in perfect working order, make her use that!

Sending big hug and much love

Lots of love

Anne

[adrianna60 in reply to Heady]

Hi Anne, we live hundreds of miles apart from each other. Thank you for your advice. I "hear" the progression of the disease in her voice, which in the past few months has become very monotone, slow and slurred. So much has changed so fast. I do encourage her to get out and live "life" every day. ❤️

[Hidden]

Larry was diagnosed with PSP in May of 2015 after exhibiting symptoms for a number of years. We were told he had a 7 to 10 year life expectancy. In August of 2016 he looked at me one morning and said, “l’m not going to get better am I.” (I was surprised at his question. He did medical disability for Social Security as a career. He knew what he had been told by the neurologist but chose not to know.) I looked him in the eye and said, “No.” It’s hard to find out you had an untreatable degenerative disease. I make a point of being honest with him as painful as it can be. The only real treatment with any benefit is exercise. As one gets older it doesn’t get any easier to do.

[adrianna60 in reply to Hidden]

Jeff166, I am so sorry. Her diagnose is less than a year and seems to be progressing so quickly. It's hard enough for me to wrap my head around; I don't know if she will ever be able to handle the reality of this awful disease. Choosing not to know seems to be one of her few comforts--I will support her as much as I can by distance because we are hundreds of miles apart. When she makes comments like "I will be better in the new year", it's devastating. I want to give hope and yet, I feel torn. She too was given so much information by her neurologist.

[Hidden in reply to adrianna60]

There are also different types of PSP. I received this information from another person on this site. Some are more aggressive than others. Larry’s seems to have a slower moving version.

The new criteria recognize the various phenotypes of PSP. They are PSP-Richardson syndrome (about 55% of all PSP), PSP-parkinsonism (30%), PSP-frontal dementia (5%), PSP-ocular motor (1%), PSP- pure akinesia with gait freezing (1%), PSP-corticobasal syndrome (1%), PSP-progressive non-fluent aphasia (1%), and PSP-cerebellar (<1%). The remaining few percent are combinations of these or still-unrecognized forms.

[adrianna60 in reply to Hidden]

Jeff, the best information I am receiving is from the folks on this site and Cure PSP. There seems to be very little knowledge and resources for PSP in Canada. She has seen one neurologist; and seems very happy with this physician. I believe she is seeing him again in January for a six month follow up. She does not have a formal exercise/physio plan in place; which so many folks on here feel is very beneficial for continued movement. I am going to mention that to her husband as she does not want to read about PSP at all, at present. I did not know that the new criteria recognizes the various phenotypes of PSP. Thank you for sharing that with me. I am most appreciative.

Adrianna

[senoritaparks1 in reply to Hidden]

Hi. My hubby steve has this rotten disease... he is already vry rigid....but get up with help and walk....slowly. his arms a d hands are very bad. Cant use hands period. What kind if exercise and how long and often? Please ler me know....Gid bless. Kelly

[Hidden in reply to senoritaparks1]

If you are in an area that has a physical therapist that would be the best way to go. They could figure out what your husband can do. Show him how to work around where he has problems.

[adrianna60 in reply to Hidden]

Jeff, I have suggested this to my sister as being a really good thing to look into....I hope she follows through. Thank you so much for your excellent advice.

[Marie_14]

Jeff we all block things out. Thank you for telling us what happened with Larry. I had totally forgotten my husband said the same thing to me. I just blanked it out along with a lot of other things.

It is heartbreaking all of this? My husband had already been told there was no cure for his Leukaemia. He had a very rare one which took two months to diagnose. He was given some chemo tablets only after he asked for them! 12 months later he was still alive and I asked for a second opinion. We got that and different tablets which worked wonders.

When he ended up in hospital before his death he was in remission from Leukaemia. However he had got PSP and signs of MSA in the meantime. It upsets me to think if the way he was treated by the Haematologist in our local hospital because we went for a second opinion. He was actually told him he should be dead! Not in a "you are doing really well way" it was pure nastiness. My husband didn't want to know his prognosis. I will never forget it. Then to be diagnosed with the other two conditions felt so cruel. It still does.

Take care of yourself and thank you for jogging my memory. I think like so many things I blanked it out.

I hope you are coping?

Marie x

[Hidden in reply to Marie_14]

I ditched Larry’s first neurologist after a year and a half of tests. The second opinion was Parkinsonism refined to PSP within 6 months.

I learned the hard way to follow your gut. I got a tetanus shot in 2000. Three months later I had a blind pimple at the shot location. Showed it to my dermatologist who blew it off. Six months later on a follow skin check the one pimple turned into three in a row. Even I knew something was wrong. The dermatologist asked me in annoyed manner if I wanted it biopsied. Yes, my answer. Was told it was benign. Had moved and changed dermatologists. The area start to bubble out with scar tissue. Pointed it out to the new dermatologist. Was told I was keloiding. Said I didn’t keliod. Was told I could start. When it got very painful I insisted it be removerd. Was told it would only grow back. New biopsy showed it was a rare cancer. Only treatment is cutting it out. I had walked around with it for a year and a half. Dumped that dematologist. Starts with a new one who told me it had almost made it to the bone.

I know doctors are only human and prone to error. Wish they would admit it occasionally. My favorite ones do.

[adrianna60 in reply to Hidden]

You're right the good ones are smart enough to know when they're wrong and we all learn from it. Unfortunately, they seem to be in the minority, rather than the majority. I had an experience similar to your own, and I have no hesitation in "ditching" a physician; although that has really only happened once. Usually, it's a question of agreeing to disagree, but in the end; we all need to advocate for ourselves and those we love. It does make a world of difference.

I recently discovered there is a brain center at a major university hospital about two hours away from my sister. Her neurologist didn't mention it to her, and today she told me that she feels like giving up because she knows she is much worse. I think this is a direct result of not receiving any professional assistance since her diagnose six months ago. She did see a physio after she was diagnosed, but has been cut back to once a month now. I thought she was seeing her neurologist in January, but it is not until April now. How often does Larry see his neurologist? Do you call him as new symptoms arise? What kind of suggestions does he offer in way of secondary supports? I am just feeling that she is not getting the support she needs. I can see why she feels the way she does; but I know that self-advocacy is very hard for some people. I so wish I was closer to her...

Thanks so much and Seasons Greetings to you and Larry,

Adrianna

[Hidden in reply to adrianna60]

Larry was seeing the neurologist every 6 months. There is nothing they can do. We live in a house with ten steps to the street walk. This makes it very hard to get him out of here. We use Penn Medicne for his neurologist. They offer remote visits via computer. I am waiting on them to let me know when this will happen. Since they can do nothing when it happens means little.

Exercise is the only thing of value for this disease. It only slows it down. He has sheets from his physical therapist to use. I have a stationary bike in the dinning room for him to use. Plus I did a video of him in a Parkinson’s exercise class he can watch and follow along. I put it on YouTube to stream through the tv in the living room for him to use there. It’s all on him to do it. He’s not inclined to do so.

m.youtube.com/watch?v=R0iqI...(Not working as expected?)

Larry seems fairly stable and has been for a number of years. The decline is subtle. I can see it.

One thing I’ve learned from this site is things can decline very quickly.

Both you and your sister are only getting use to the whole idea of this disease. We’ve had a few years to do so. Doesn’t make it any easier just not so overwhelming as the time goes by.

[adrianna60 in reply to Hidden]

Thank you very much for your response and posting this video, Jeff. I really appreciate it--you're so right; it is very new to us; and I shall have to just follow the ebb and tide of this disease and be as supportive as I can be. I truly see the importance of an exercise/gymnastics program.

It is so new to us, and for sis, getting used to be unable to control the uncontrollable is so very difficult. I will support her as much as can from where I am; I think that is all I can do. It's easier for me to be pragmatic and honest, than to fill her with false hope; as tough as that is...

Kindest regards,

Adrianna

[adrianna60]

Marie, I am so sorry you and your husband had to go through this. No one needs to hear that type of nastiness. It's downright cruel and inhumane on top of everything else.

Hugs, Adrianna.

[Ettavb]

The denial has been a prominent part of my distrustful mother’s journey with CBD. Only a few things to share from my experience because others have already stated excellent points. My mother would fire any doctor or stop talking to anyone (including me for nearly a year) that told her she had this condition. This caused secondary problems for sure (like not having any one doctor who will order any equipment or tests because they don’t know her “case”, and like numerous catostrophic falls including one down a full flight of stairs and one outside at night in the winter in which she was alone for nearly an hour (she had been told - because of the condition- not to walk without someone around)), but she never owned that aspect of her denial. Even now with her being in ICU this past week she wants me to research the cutting edge treatments for this even though she is near end of life - she is fighting every inch of the way.

I’ve finally accepted this is how it’s going to go for her — and me. I’ve often thought of all the times we’ve missed to just enjoy one another’s company in the limited amount of time we have as opposed to fighting through every step of her condition. If I didn’t have a wonderful husband to talk through this, I would seek counseling because the emotions are very complex.

It’s hard for me to be certain (because my mother has always been distrustful of Western medicine to the point of spending thousands of dollars on any whiff of an alternative treatment that may come along - including 10k for hyperbaric treatment) but I think the actual condition she indeed has may be exacerbating this personality trait. She has several prominent new personality traits since her dx of CBD including extreme manipulation and lying. All these aspects often present me with huge knots to untangle to try and figure out what really is going on.

I think I understand - in the simplest terms - this belief in alternative medicine/a cure to be her attempts to have some semblance of control for an uncontrollable situation. I’ve often thought a better version of me... would give her that.

[adrianna60]

Thank you so much for your words of wisdom Ettavb. There is so many similarities in our present situation. The last paragraph of what you have written is spot on---trying to desperately control an uncontrollable situation.

I too was cut off for a time because she didn't like my response to a question she had posed to me. One wants to give hope and love; yet be realistic, but I am constantly on tenterhooks. I don't want to be engaged in half truths or chasing mystical cures for her.

I do understand somewhat; because the loss of a child taught me that life is fraught with hopes and dreams dashed....I searched years for an acceptable "why me" and "how could I have prevented this" strategy before acknowledging that bad things happen to good people all of the time. That is where I finally found my own peace and acceptance.

[Ettavb in reply to adrianna60]

I’m the pragmatic one in the family - and though I’ve often felt terrible for being the voice of reason - I’ve decided not to change who I am now; if anything I’m the constant in her world - she can depend on me to not sugar coat things. But... that really only ultimately adds to my heartache.

As an aside - mom has lost two children; one at the age of six and another just 10 months ago (my sister was her care taker when mom wasn’t speaking to me - she was 49). I think mom never benefited from good counseling on how to resolve the loss of her first born at such a tender young age — and I do think that has some bearing on how she is dealing with things currently. My heart (and admiration in resolution) goes out to you for the loss of your child.

[adrianna60 in reply to Ettavb]

Thank you so much Ettavb. Like you, I am the pragmatic one. It is very hard to help being so far away from my sister. Sometimes it is very difficult being the voice of reason, when the there are no answers only "this is the best we can possibly do", and having to be satisfied with that response. The loss of our child was difficult (it led me down a terrible road to addiction (from which I have been in recovery for 30 years). During that time I have learned patience, love, compassion and so many different things, including self love. I learned to advocate for myself, my father and many other people. I didn't always make friends, and sometimes I lost them. One of life's truest lessons is surely to be true to ones self, and do the best one can do. I truly do feel blessed.

Wishing you and yours a joyous holiday season and a move towards a cure in 2018.

Love, Adrianna

[Birdman34265]

Hi Adrianna,my wife is 3years into the psp journey,she is on10mg amitriptyline twice in the evening it seems to help with coordination with her feet as she draggs her left foot,we have tried lysene and amino acid supplement i think it has helped her as these are brain food,i am sorry to say there is no cure as brain nerves lost will not recover ,keep positive and lots or love will help her ,all our love Peter and Kathy

[adrianna60 in reply to Birdman34265]

Once this disease is diagnosed, there is always the "when did this all start" moments of looking back and reflection (as though that will make any difference in the long run, sadly enough). I started being concerned about my sister more than three years. Her various symptoms were put down to menopause, depression, and all sorts of other ailments. It was a fight to see a neurologist. By the time she saw a neurologist, she was shuffling and it was obvious to me that her eye movement were "strange". She'd had a number of backward falls as well, and emotional responses to things which we know are now tied to PSP. I cannot say to her that "there is no cure" because she is nowhere near acceptance and may never get there. I went in that direction once, and she didn't talk to me for a few months and cancelled a trip I made to see her...it's just really tremendously sad for her Peter.

Like so many others, I am praying for a cure. in the meantime, there is life and that is what is worth remembering; we all need to live as much as we can for the present, as difficult as that can be at times. Life is so, so very precious

With love to you and Kathy, and best wishes for the Holiday Season..

Love, Adrianna

[LuisRodicioRodicio]

Hi Adranna 60!

Enclose is my experience, I hope it can inspire some positive actions to other caregivers. In short these are my experiences on PSP disease expecting they could be useful :

First:

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 Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.

2017-12-17

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, use wheelchairs with seat belt and 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). Weight supported: 70 kilogram.

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. Also helps steam boiling water with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub with a towel covering head and bowl. (Olbas oil in U.K.)

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 mouth and ocular muscles. Then she 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.

In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by his own means, do it, even if it takes more time. With some help if necessary.

Without any scientific basis, only observation of few nearby neurological diseases PSP like, 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 afternoon, 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 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 physician. 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 PSP 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 paragraphs are to 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.

A big hug.

Luis

[adrianna60]

Thank you so much for your response, Luis. What an extensive and wonderful plan you have in place for your wife and family. We seem to be so far behind the eight ball in Canada, and of course we have a population which is not that large. She received a definitive diagnose of PSP in the fall of 2017, as her neurologist could see the "Hummingbird" pattern in the mid brain area. She does approximately one hour per day of walking, stretches and other activities. She is eating an organic diet, and taking vitamin supplements. There does not seem to be a great deal of coordination between physical therapists, her neurologist or physician. I have suggested that she consider independently set up a program which will work for her rather than work through her health authority. Canada has "universal healthcare" but really that is more a play on words than anything these days. Each province is given funding by the federal government, which it then hands out to provincial/regional health authorities. So for example, in the province in which I reside my physical therapy may be deemed to be once per week for one hour depending on what I am deemed to "need" (she has been cut to once per month, which I think is ridiculous. Home care assistance is dealt with exactly the same way.

It can be extremely difficult for a primary caregiver to access assistance at home, without extensive and extreme advocacy on behalf of their loved ones. What is true for one province, may not be true for the next; and each regional authority within the province can use the funding differently. The only thing one can do is to vigorously advocate for more covered services which is what I did for our Dad, and believe me it was exhausting. Simple things become bureaucratic nightmares. It's simpler if one has the resources to rely on one's self for physical therapies, nutritional advice, etc.

Wishing you and yours the best of the holiday season, Luis; and praying for a cure everyday...

Kindest Regards,

Adrianna

[LuisRodicioRodicio in reply to adrianna60]

Physicians and physiotherapists established the fundamentals of treatment and gymnastic exercises.

From there we have made a particular protocol of gymnastic exercises that have the approval of doctors and physiotherapists.

In these moments we are insisting on exercises to avoid choking and improve the natural techniques of expulsion of phlegm.

At the end of January 2008 I hope to have the definitive protocols to renew the current protocol.

The idea is simple:

PSP affects ALL muscles. It is about having a protocol of gymnastics that moves most of the muscles with special attention in those of walking, balance, speech, swallowing and defensive cough.

Perform the gymnastics protocol 6 days a week.

Hugs.

Luis

[adrianna60 in reply to LuisRodicioRodicio]

Yes, I understand completely the importance of a very good program. She is doing about 45 minutes a day of various exercises such as walking, and stretching exercises. I don't know how much speech therapy she is doing; I am going to find out.

Thank you so much for your very detailed and informative response, Luis.

Best wishes,

Adrianna

[JA10]

Hi, lots of good advice here from others, the one thing that I picked up on that I have experienced was you saying your sister sounds slurred when speaking. This is a PSP issue, however my mum was sounding worse if she had not recently drunk something. I mentioned this at the dentists when I took her for her appointment and he said it is something that happens sometimes and gave her the name of a spray to get from the doctors. This helps lubricate the mouth helping to keep the speech clearer, it stopped the slurring.

I hope you are able to help your sister, I look after my mum who lives 10 minutes away so it is easy to be there. I am thankful that my husband and I moved back to near them some years ago from having lived 6 hours away, it must be so difficult to be a distant carer.

Best wishes.

[adrianna60 in reply to JA10]

Thank you so much for your response JA10. I will see about the lubricating drops. She says that she is also drooling some too, which is really upsetting her--I have found that some her patterns of speech have really no rhythm to them. Some days she is easier to understand than other days, and of course her voice has changed. This has all just happened in the past few months. It also depends who the listener is, right? My daugher-in-law thought she sounded much worse Christmas Day than I did, but this all a matter of perception, I think. It's hard to get used to the idea that there is no cure, and no getting better (barring a miracle of course); and they do happen. Living in the present is very much of the essence.

Kindest Regards,

Adrianna