My journey through PSP

Hi guys,

In 2006 I began to feel very, very tired. I went to see a number of doctors to find out why I was feeling this way. Beginning in 2007 I was diagnosed as having Atypical Parkinsonism. At that time I fell backwards a few times. Then I was diagnosed in 2008 as having Progressive Supranuclear Palsy (PSP). I continued to fall backwards and realized I would have to protect my head and other parts of my body. I bought a skateboard helmet, back protector, elbow protectors and underwear protection for my tailbone and hips. At this stage I also put railings in various sites in my home, realizing that this disease would not go away. At this stage my doctor recommended that for my self-protection I should use a wheelchair, so I bought an electric wheelchair. Surprisingly I accepted all that bad news gracefully and without resentment. I attributed that attitude to my military service experience for 12 years in the Israeli army.

But next I had to deal with all the other symptoms of PSP that popped up, such as speech impairment, very shallow breathing, etc. I also had sleep apnea before the PSP and used a Bipap machine for sleeping and snoring at night. This machine prevented me from having difficulty breathing during the night. Every time I am going to rest during the day I put it on.

All this time I was running my diamond business, Diamonds of Palo Alto. But finally I realized I couldn't manage it anymore. I couldn't focus my eyes to look at the diamonds anymore. I closed my business I saw an occupational therapist who said that I should give up driving. After a little while I bought a used van that was wheelchair accessible. I hired a caregiver at the time. I stopped driving to take me whevever I needed to go. My first caregiver was was very strong but I discovered very fast that he was not suitable for what I needed. I next hired a lady that was recommended to us who was just perfect for me, and is still with me today.

Since May of 2010 when I stopped working I went on SSDI. I am very fortunate in having a wonderful, supportive wife. From the beginning until today she is beside me. I also have a very helpful brother-in-law and friends who are standing by me during all this time. My wife deserves a medal for the way she is coping with my situation.

My schedule since I have been on Social Security is the following.

At 7:30 in the morning from Monday to Wednesday and Friday my caregiver comes and helps me to get up, shower and have brekfast, dress me, and usually we go to the gym. We run some errands and go to the library, at the library i pick just books on cassette because i cannot focus my eyes to read a book. After the library, i go to the post office and then home. After lunch, i usually go back to bed and stay in bed until dinner time and then go back to bed. I spend so much time in my bed because i feel the most safe there. On february of 2011 I became a part of the experimental drug, DAVUNATIDE. After 4 months i started to walk with a walker and i got my normal voice back. I am not sure how much help I am getting from doing the daily exercises to help me to walk. In January of 2010 my wife and I decided to celebrate my 60th birthday in a big way, even a friend from ISRAEL came to celebrate with me. I invited all of our friends from all over the United States to a fancy restaurant. In AUGUST of 2010 my wife and I went for a vacation in SEASCAPE Ca. In March of 2011 we went to Maui for a week. Since the beginning of the journey, I never was depressed or upset for a second about my situation. I accepted what I had.

That is the story of my journey with PSP.

Israel

6 Replies

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  • Wow, you have done so well, I know how important it is to have support and love from the family, as we do with my husband, i do wish it possible for my husband to try the DAVUNATIDE, i think we came a little too late to the PSP to know anything about it. Well done for the progress you have made, and may it continue.

  • What an amazing story! Well done to you for your positive attitude.

    I cared for my father at my family home, we kept him as busy as we could, took him on holiday and kept up with family get togethers. I have to say the inspiration was from my husband and I , I think dad would just have sat in his chair. I hope others with PSP or those that care for loved ones take inspiration from your story and may your progress and positive attitude continue.

  • Thank you Isreal, for the story of your Journey. It does bring some hope to all of us. My husband has been in the study for 13 weeks, not seeing any improvement. Was your study a double blind study, or you knew that you had the drug? We could have a placebo. Thanks for sending hope.

    Betty

  • hi betty/

    yes ,my study is a double blind study. what is the condition of your husband? I am in the UCSF study. Which one are you in?

    Don't lose hope.

    Regards,

    Israel

  • dorothy-thompson

    Hi Israel, more power to your elbow as we say here! Well done for your positive attitude towards life in general and PSP in particular.

    My husband is a lot like you, his routine is very similar, he was diagnosed with PSP last year and he started on the Davunatide trials yesterday at Haywards Heath Hospital, Sussex, all drug trials are double blind so we shall see what happens. Gotta keep the faith and believe and just hope for the best. But unfortunately the trials are now closed, we have been told that they have got their full complement of participants.

    And finally, we're scheduled to visit our son in New Zealand for christmas!

    regards

    dorothy-thompson

  • Hi Israel....you sound as though you are "enjoying" your life...your trips out & your holidays. You are a remarkable man as I'm sure your wife will agree.

    May I ask why the male carer was not suitable as we are waiting for a carer & Frank has said he would prefer a male. I'm thinking yes because hopefully he will be more able to lift Frank if necessary. We're only having an hour in the morning to get him up, shaved, showered & dressed so outings are up to me. Unfortunately weather here dictates this & English weather is atrocious so outings are not too often.

    I know what you mean about feeling safest in bed...Frank has said that on numerous occasions.

    He is being re-assessed next week for the Davunetide trial so fingers crossed!!!!

    Long may you continue with your positive attitude. Take care & keep smiling. Love Hazel B xx

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